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MS & Things People Should NOT Say

MS & Things People Should NOT Say

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I think we have all dealt with people making comments, or just doing something that is bothersome to us, when discussing our MS… or if it gets brought up at random… I’ve had some people tell me that I talk about my MS too much. Well, this was when I was first diagnosed and I was going through a LOT of changes, how could I NOT talk about MS a lot? But as time went on, and when I was having discussions with family, friends and sometimes-just acquaintances, there were things said or done that really bothered me and I had to bite my tongue and just nod and let it roll off my shoulder. So, just to vent, and hopefully provide something useful for others to consider when speaking to someone with MS, I’ve made a list of things that should NOT be said to someone with multiple sclerosis.

  • You don’t look sick
  • You shouldn’t drink diet coke
  • OMG this diet cures MS
  • OMG this vitamin will leave you symptom free
  • Aren’t you gluten free? … You should be
  • Aren’t you too healthy looking to have MS
  • Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS
  • Well aren’t you taking your meds?? (Yes….) Then why is your MS bothering you still?
  • Are you contagious?
  • You shouldn’t eat meat…
  • What did you do to get MS?
  • How DID you get that? You must’ve had mono
  • If the heat bothers you, don’t be in it… or move…
  • I heard a vaccine caused it
  • Can’t you just walk slower?
  • Why are you dragging one of your feet?
  • Why are you always so tired? It can’t be that bad…
  • Well if you’re in remission, why are you on meds?
  • If pregnancy makes it better, why don’t you just keep having more kids!
  • That celebrity with MS seems just fine, why aren’t you?
  • Do you take enough vitamins?
  • Are you sure it’s MS…? How can doctors be so sure?
  • Stop using MS as an excuse… you can’t feel that way ALL the time.
  • Maybe you just need to try a little harder.
  • Why don’t you try a different medication, that doesn’t cause so many side effects?
  • You seemed fine the other day…
  • You slept ALL night, how can you be so tired?
  • (This is for the younger MS’ers) WOW… you take more medicine than my grandma…
  • MS… isn’t that the muscle illness? (No. That’s MD = Muscular Dystrophy)
  • You daydream a lot in the middle of a conversation, that’s rude! (No… it’s cognitive issues)
  • Why do you keep forgetting things?
  • Oh TRUST me… I know exactly how you feel!
  • Oh, you should just exercise more…
  • It really can’t be that bad…

Oh… and when they compare how they feel or have felt in the past, with your symptoms… like it’s the EXACT same feeling…

Or when they just give you that “look”… you know the “real housewives” kind of look… nose in the air, scrunched up… Yeah that one…

I’ve come to learn that when some people (not all) ask how I’m doing… they are just doing it out of politeness… they don’t actually want to know how I’m felling, so I simply respond w/ the phrase we are ALL too familiar with… “I’m fine”

I could probably add to this list daily but I didn’t want to make the longest blog post in history! So while those of you are reading this that have MS are nodding your heads while you were reading, because you’ve been told the same thing before, I hope those that have a family member, friend or just an acquaintance with someone diagnosed with multiple sclerosis, take “the list” in to consideration. It’s not that we don’t enjoy people wanting to help out with their suggestions… sometimes it’s just nice to have support from individuals, and not their suggestions.

And I’ll just add this in there, this post is not meant to offend anyone or say that diet and exercise is something we don’t want to hear about… and that’s great if you’re on a specific diet that helps manage your MS… but I’ve heard too many times to count, “This certain diet will CURE your MS…” Well, the reason I disagree with that, is because I have a certain definition of the word “cure” when it comes to MS…

Cure for MS: Something that not only stops progression from happening in the future, but also reverses the damage that has already been done to my Central Nervous System. Even though stopping future progression is something we all strive for, we still have to live everyday with the symptoms that were caused by previous attacks.

xoxo

Ashley Ringstaff

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Comments

  • Lucylucylucy
    12 months ago

    “Opinions based upon theory, superstition, and ignorance are not very precious.”-Mark Twain
    I think of this every time I have ever hear a misinformed comment.Aside from everyday things that people will comment on,I’ve been dealing with opinions on health since being diagnosed as a type 1 diabetes diagnosis 9 years ago.
    Whatever their agenda is,it doesn’t matter.It is a waste of time for me to be offended (whether they mean to offend or not) as I have about as much understanding of their daily struggles as they do of mine.

  • Lucylucylucy
    12 months ago

    Whoops,edit: type 1 diabetes diagnosis 29 years ago.

  • JurdMcBurd
    1 year ago

    I have actually had some discussions recently related to this.

    Loss of independence is VERY important to avoid.
    I was forced into independence many times throughout my life, and fell into the mindset of taking care of myself.

    Once I needed help, I realized the hardest part was asking my wife, who I could realistically state saved my life, to stop trying to help in some situations.

    But a lot of it comes from reasonable logic.

    One day, I was very worn out, and worked from home to avoid some of the fatigue involved in driving to work.
    A few people at the house saw me getting dizzy and nearly falling over because of unstable temperatures in the house.
    The next day, I repaired the shower door in our bathroom, unclogged the drain in the laundry room, and then was carrying a basket of laundry – which prompted someone to offer to carry it.

    Now, I don’t mind at first, but I said, “Nah, I’m fine, I’ve been feeling a lot better today,” and they started to reach for it, thinking I was just being modest.

    I was a bit “cog-fog” – as you phrased it in another of your articles – and I sounded kind of vindictive when I said, “I really want to be able to handle things myself, I’ve got it.”

    They took that as arrogance, and it took a while to convince them it was desperation – desperation to feel more in control of my own life.

    This whole thing has been horrifying, but the most horrifying thing was literally being unable to type, at this desk, in this chair, with this keyboard, because my fingers were going numb.

    I don’t know how to cope with being unable to carry a laundry basket.

    That’s hard to explain to someone who is able-bodied.

    It’s not that I think you’re being mean or controlling, it’s that I’m absolutely horrified, and I don’t know how to express that quickly without sounding vindictive.

  • Ashley Ringstaff moderator author
    12 months ago

    I completely understand where you’re coming from… it’s like we WANT to do things, even the most minuscule task, just cause we CAN at that time.
    We never know when we won’t be able to do this small easy tasks, there is no ‘for sure outlook’ on what our lives will look like in the immediate and/or distant future.

    xoxo
    Ashley

  • Usermane
    2 years ago

    I’ve heard them all. I’ve also heard from an aunt as I was limping and walking out of balance during a raging MS stroke at the beginning of my illness : “But what are you going to do ??”, well first I won’t spend energy trying to explain how the disease works to you whereas this is the internet age. It’s really beyond some people’s understanding that one can be in an awfull condition one day and fine a few days, weeks or hours later, and vice versa.

    And my boyfriend, who is otherwise really supportive, tends to forget my fatigue isn’t a lack a will power. For instance :
    – “Well you can go buy it, the supermarket is only five minutes away.”
    (Me, laying miserabily on the bed) – “No not today, I’m exhausted…)
    – “You’re so lazy !”
    – “@#&”% !”
    – “I can’t tell you anything.”
    – “This is my entire life and energy that is being suked out of me, I won’t let anyone lecture me on something they don’t even begin to understand”

    And I have to remind him way too often. My parents also tend to forget, no matter how many times I explain and describe fatigue to them. I think we are doomed to everlasting misunderstanding of what our condition truly implies. To me it’s like a record on a loop.

    I find comparing it to a permanent jet lag or the flu tends to work, but some people always think you’re exaggerating. It doen’t matter that they now how you’ve already lost some of your senses, mobility or whatever, they just don’t get fatigue.

  • Ashley Ringstaff moderator author
    1 year ago

    Hey. The is very true… no matter how supportive our loves ones are, they will never fully understand what we go through with out symptoms. I think it’s also easier for them to make suggestions or ask if we can do something when we’re having a really bad fatigue day, because they truly DO NOT GET IT.

    They don’t get that we feel like our limbs are 100’s of pounds, and that it feels like our body will give up if we attempt to do anything.

    Not only that, but if we were able to get up and actually go to the store, as you mentioned, we would probably mess up what we were supposed to get in the first place, or not get it at all.

    UGHHH

    Yes, I feel your pain.

    xoxo
    Ashley Ringstaff
    MultipleSclerosis.net Team Member/Moderator

  • kkcurtis
    3 years ago

    The comment that bugs me the most is you don’t look sick or you are looking better. More than likely if you see us out and about we are having an okay day. You don’t see us at our worst because on those days we usually aren’t out. For the person whe didn’t get the point of the article, I agree that dialogue is important for people to understand this disease and we should be open to comments/suggestions. The problem is that the majority of people sharing their opinion on my health is that they don’t want to have a conversation. They don’t want to actually hear that we tried that, did this, feel like this, etc. If they would like us to be open to their input, extend the same courtesy to us.

  • auspotts
    3 years ago

    ” it’s not that hot” …drives me crazy!!!

  • DavidA
    3 years ago

    My brother in law said “Multiple Sclerosis is just a man made term created by the medical community in order to make money off you. It’s not real. You choose to have MS. When you wake up tomorrow….choose not to have MS!”

    He asked, “If I were to get rear-ended by a drunk driver and was left disabled, did I choose for that to happen to me?” I said no and he said WRONG! We choose everything that happens to us and I choose to have MS.

    I wish I were kidding but he said all this and more. I showed him all my MRI’s and lesions, diagnostic reports from Nuerologists, videos, testimonials, etc. Any advise on how to respond to him or explain MS to him?

  • nurse3882
    4 years ago

    You seem to be doing well.I would never know you had a problem as I am using the wall to keep me upright.

  • margie
    4 years ago

    Hi its my first time here my brother has been living with MS for about 15 years now..he does not take any medication does not see a he does absolutely nothing for his MS he only smokes weed and drink rum everyday he does not eat very much at all.now that I live with him…I try taking care of him which is so hard his not a clean person never takes showers never change his cloth ..his a dirty person …is this all part of the MS

  • Lisa Emrich moderator
    4 years ago

    Hi Margie,
    It’s hard to know for sure whether this behavior is related to MS. MS can cause personality changes as well as effect a variety of emotions. If you are able to get your brother to talk to you about what might be going on, then perhaps you can go from there. Although you may want to help him, he may need to help himself.
    Best of luck,
    Lisa

  • 10gm5qj
    4 years ago

    When I first found out I had MS I told my brother who confused it with scoliosis (seriously?) so he started telling me this is what happens when I don’t sit up straight and I hunch over all the time. I explained to him that’s not what it is, but I guess he thinks it’s funny to tell me to “stop slouching” every time he sees me now then says my slouching and not getting exercise probably really did cause it anyway. It’s so frustrating! he never listens long enough for me to tell him what’s really going on and obviously doesn’t take it seriously at all. Anytime the topic comes up with family and he’s there he turns it into a discussion about how much exercise I get. My mom has even started telling me I should sit up straight more. I don’t even really slouch!!! I just want to tell them to shut up and read something about it for once. Just like I would do if they got a scary diagnosis.

  • Artjj44
    4 years ago

    Good choice of comments Ashley.
    My Fiance and I have been together 8 years. She was diagnosed with Fibromyalgia a month after my MS diagnosis (2010). We have a 6 year old son and we’re discussing the payment for his insurance. I was making a point on how the billing cycle changed and math is not her strong asset. She actually said to me” I need you to turn off the MS thing for a minute and listen to me”. Oh dopey me. Forgot my MS stop watch. I can’t believe she said that. Many of the symptoms of Fibromyalgia are close to MS, SO I’m very patient. Did I listen to her point? No. Just kept thinking about what she said.
    Point: Don’t ignore the “Dead End” sign. The brick wall.you hit may leave something totalled!

  • Stephanie Dodds
    4 years ago

    The one comment which bothers me most comes from my mother-in-law. I truly love her to death, and she is the world’s most generous, loving, caring mother-in-law. She just doesn’t seem to understand MS *at all*. I am very weak on my right side, and I often lose the ability to walk around safely, and comfortably even with my walker. Since I am overweight, she says often that if I were to “exercise more, my legs wouldn’t be so weak, and I would be able to walk around much easier, and I probably wouldn’t stumble and fall nearly as much.” It is only at those times I wish she could live ONE DAY of my life. Perhaps after living with my pain, my unsteadiness, and my fatigue, she would stop recommending I exercise more and realize how difficult it is for me to even stand up for 5 minutes.

    I recently went to a physical therapy appointment, and ended up hurting my back more than helping. Her comment when I called her and explained she wouldn’t have to drive me to PT because I was hurting from the last appointment was “Well, you aren’t used to exercise. That is going to happen when you first start going to therapy and doing the exercises.” I just agreed, thanked her, hung up, and took a nap! =) It is so frustrating when someone who really cares about you makes comments which make you feel like they don’t care at all.

    That’s the thing, though. I know, without a doubt, my mother-in-law loves and cares about me a tremendous amount. I wonder if maybe I am misunderstanding the intention behind the comments or something because I know she wouldn’t intentionally hurt me. She is a sweet southern lady who would never hurt anyone, including an enemy. She would just “bless their hearts”! =)

    To Mighty Strong: I believe the purpose of this post listing the things people should NOT say is mostly so we, those who have MS, and get the comments, can have a place to vent and share the insensitive comments we get. It is also a good resource for anyone interested in not offending a person who has MS on the things not to say. They might not know that saying “You don’t look very sick.” can be found offensive. We realize we don’t look sick, for the most part. My husband likes to respond to that comment when we park in handicapped parking by saying “That’s weird, because you don’t look ignorant. There is a cure for you, though.” I really love my husband. =)

    If you don’t get it, I’m sorry, but I really think those of us who get the ugly comments like having a community of MS patients who understand with whom to share our feelings. =) If you haven’t ever gotten an ugly or insensitive comment I am truly happy for you. =) I hope it remains that way. Keep up the accepting attitude, and perhaps the world will always view you with such acceptance. =) I wish you lots of luck!

  • Mighty Strong
    5 years ago

    I’m thinking -so I have MS but I really don’t get this article. People say what they say. There are no should or shouldn’ts – if there are so many rules how are people to know what to or not to say? REALLY. We’re doing the best we can. If someone says something that pushes a trigger, is that their fault? How are they to know? Or is the trigger that’s pushed a signal that I need to do some work on an issue to build my own confidence; to accept who I am with MS; I’m sorry I just don’t get this article. I am curious who decided these are the things people should NOT say. Seems this is encouraging division rather than unity. I just perceive a us against them when I’d rather focus on more conversation, less judgement, less finger pointing, more acceptance.

  • MsUnderstood
    5 years ago

    1. You look good!
    2. You don’t Look Sick.
    3. It can’t be THAT bad.
    4. If you’re on MS meds,why are you still feeling “that way”.
    5. The EYE Roll
    6. (The gossip of using MS as an excuse)

    As I’m trying various ways to take control of this disease, it’s not about How MANY and How Fast I can get “things” done, it’s all about form, form, form. Being a competitive athlete all my life, it’s only in my nature to successfully execute tasks one task at a time, complete ONE, then on to the next, at an Effective pace, take breaks/rest, if/when needed, and please step aside so I may continue to create, explore, connect, educate, learn, implement, test, fail, try again (from a couple to countless) till the task gets done right – It’s All About Form!
    Thank you.

  • smalltowngirlbigtimelife
    5 years ago

    “Are you better yet? Or isn’t she better now?”

    One of the aspects I find most frustrating about MS is the fact that you are never better. You are never done with MS. Many of my family members have this idea that MS is something you eventually get over, and it is impossible to explain to them that there is no end. I remember being in the hospital at one point and wishing to myself that I had cancer instead. I thought that at least if I had cancer there would be an endpoint. Either I would go into remission and eventually become declared cancer free or I would die. Either way, there would be an end. I know this may sound ridiculous and perhaps even selfish, but it was how I felt at the time.

  • JLo
    5 years ago

    My cousin did my yardwork saying “I was just trying to help”. I told him that I am able to do it and enjoy it, so its not necessary to help. One month later he did it again. Arg! Now I’m angry and he has caused emotional damage. Please dont help unless I ask. My MS nurse says I should explain this to all of my friends & family.

  • Ashley Ringstaff moderator author
    5 years ago

    YES! I mean I know that they think they are doing it for our own good, or to help us out. But if it’s something we can do, or the ONLY thing we can do and enjoy, don’t rob us of that… we’ve already been robbed of enough things cause of MS.

  • Bob
    5 years ago

    What’s it like? That has a lot of open thoughts to that question. How do I answer? Well, I say ‘when you wake up put a 5 pound spat on each ankle and every hour and another 5 pound spat. By the end of the day you should have 85 pounds on each leg. If you excurses add 10 pounds until your done. It feels a little like that.

  • Ashley Ringstaff moderator author
    5 years ago

    Oh – that’s a nice explanation… But I still feel like people would think it’s an “over exaggeration” … UGH

    So frustrating… and I try and laugh a lot of things off, or ignore people.. but sometimes it’s just too hard, or i’m having a ‘temper day’ as I like to call them. Where my tolerance of stupid comments is very low and I just say what I want to – without filtering.

  • trish444
    5 years ago

    my aunt said did you get that from your father’s side, quick reply no they are into heart attacks like us, just thought i would try something different

  • Ashley Ringstaff moderator author
    5 years ago

    Love the sarcasm – even though it’s not a laughing matter… some people just need to have their mouths duct taped…

  • Jenny
    5 years ago

    I remember when I was first diagnosed and struggling to wrap my head around my diagnosis, a friend came up to me and said, “My uncle had MS…he died.” Great. Just great. Fortunately I have been much better educated since then!

  • Ashley Ringstaff moderator author
    5 years ago

    OH! I had someone kinda tell me something like that… but more on along the lines of, “My aunt has it… and she is helpless and home bound…”

    It’s like… HELLO! I’m already freaking out here, don’t make it worse!

  • Jennnya31
    5 years ago

    This post just hit spot for me personally! I have given up on trying to explain to people how I feel and that I didn’t do anything wrong to get this disease and I’m living with it so they should to. I have realized who my real friends are (including family) and I guess I don’t have many. I can’t be around the negativity it’s not good for the health of a person who has MS to be judged and have to constantly explain themselves. I’m happy with my life and my family my boyfriend and I have made and that’s good enough for me. I loved the list of things not to say its perfect. I hear you need to exercise, you need to eat better, your lazy, well you look ok, you have this because….its hurtful but I try to be positive I figure it taught me how strong I am and who my real friends are!
    one love

  • Ashley Ringstaff moderator author
    5 years ago

    So true!
    I might not have A LOT of friends, but the ones that I have are the ones that matter the most.

    It’s quality, not quantity when it comes to those you have close to you.

    It’s really hard to remain positive all the time, I can’t say that I’m ALWAYS positive, but I’m not as ‘negative’ as I used to be…

    xoxo

  • Stacy
    5 years ago

    When I was 1st diagnosed with MS in 1985 (after the birth of my 2nd son) I told my gyn/OB about the MRI’s confirmation. Her comment was, “Everyone is probably walking around with a brain lesion or two”. WOW.

  • MS Not4ME
    5 years ago

    Well all I can say is what a bitch!

  • Ashley Ringstaff moderator author
    5 years ago

    oh wow… that’s insane! Hope you are doing well!

  • ThisBSMS
    5 years ago

    I told my friend how hard it was for me & that I’m having a difficult time & need some comforting & encouragement, support, etc. She said that MS is a lesson for me! And everything happens for a reason. And I haven’t learned my lesson yet.

    A lesson? Are you serious? I’ve been learning for over 8 years now. Ha! I take care of myself & it takes a lot of effort. She basically offered no emotional support & actually things I deserve this lesson, apparently. Some nerve!

  • Ashley Ringstaff moderator author
    5 years ago

    UGH!
    Really… I can’t believe some people… I mean really!!!
    I’m sorry you had to deal with that kind of attitude…

    I really wonder what happened to peoples manners sometimes….

  • Bobo
    5 years ago

    So many comments, as all of us have experienced the off-putting comments from professionals, family, and supposed friends.

    Best one I had was from a PCP I’ll never see again: “You’re not in a wheelchair yet!”

    That was supposed to cheer me up?

  • Ashley Ringstaff moderator author
    5 years ago

    Uhh wow… seriously?
    I think i’m speechless on that one.

  • RSDguy
    5 years ago

    All this sounds horrifically close to RSD(my affliction). The pain, the looks, the stupid comments(especially from the people that are the closest) & no sign of a cure. Best wishes & good luck to ALL.

  • wingnut
    6 years ago

    Im almost 55. I like how my BFF reminds me that I’m not 20 anymore and she also experiences memory lapses. Then a few minrhs later when i share with her that im having bladder issues she proceeds to tell me that she also has bladder issues and it’s just our age. It seems that she has experienced every symptom I have..i want to ask her if she also wears a diaper or maybe she should get checked for MS. But i just can’t be that rude.

  • Marina Pekic
    6 years ago

    My story I was diagnosed on my birthday 2009 went to see ssi doc shortly after that. He had an empty file folder in front of him and a piece of paper with my license on it. After his exam of me he asked who told you that you have ms my 2 neurologists was my reply,he then proceeds to say well they lied just lose some weight and you will be fine.

  • aheroswife
    6 years ago

    I took my husband to the VA hospital in Tampa for a neurology appt to get him started on a DMD. He was 27 at the time and up to that point wasn’t ready to start any treatment, so this appointment was very hard for him. After the neurologist did the usual exam, testing reflexes, watching him walk etc, the neuro looked at him and said “You look fine to me, what’s the problem?” I was so enraged and angry. I asked him if he knew anything about MS and he said no he did not know that much about it. I looked him dead in the eye and said “Then find someone who does” He returned with another neurologist, whom after the exam, said to the other doctor “This young man isn’t “fine” in fact he’s pretty advanced for his age. This goes to show even some doctors can make ignorant comments. All he saw was a young guy and assumed because of his age he couldn’t really be that bad.

  • Lisa22
    6 years ago

    My favourite comment was from my older sister who I hadn’t seen in 2 years and I had been diagnosed with MS during that time period.

    She said…”If I don’t see it(MS) I don’t believe it”.

  • 22much
    6 years ago

    So from the person with fibro again, after reading your comments I can only say that so many of them resonate with my experience – the guilty feeling that it would almost be easier to have cancer because there’s a definite path with a resolution of some sort (it may come back of course), but living with the day in and day out symptoms, with no end in sight, is very challenging – especially during a bad flare. I also have interstitial cystitis and chronic pelvic pain. The loss of who I was before this all started overnight, and the process I’ve gone through to get closer to a place where I can accept and try for symptom management rather than fantasize about a cure, has been a bumpy one. I’ve said and done things my former self would never fathom – so to those who think people in support groups are in pity–party mode, I’d just say that they’re probably in shock and still in a certain phase of the grieving process. If they’re stuck, and you’re in a great place, how about turning some of that extra energy toward compassion for where they’re at. It’s almost like seeing that brings out a form of self-loathing in yourself and reminds you that you could very easily find yourself in that place. You really become that person this whole post is about, belittling us because we’re making our disease worse by not following your path. One of the things I found as fast as diet is concerned, is that even though I’d like to make some dietary changes, I’ve struggled with the mental organization necessary to get menus my family will like in place, get the shopping done, much less cooking. My husband and I just take one step at a time and try to do better as we learn more and I understand my ups and downs a little better – so there’s that though – with all these people suggesting different diets, they don’t understand I lack the energy to cook them, and my husband is just as overwhelmed by the changes this has wrought on our life – he does most of the house and child care now.

    On the comment front, the one I loved the best was from my PT who does my pelvic pain treatment. Over the years I’ll have to cancel a series of appts either from an IC flare or fibro when I feel dangerous driving because I’m dizzy or spacey, or just in too much pain to get there – she said, “none of my other patients with fibro have the same problems you do” as a reaction it my having canceled. When I first was diagnosed, I got to a point where I didn’t believe I even had it because it was so mild and intermittent. Then one winter over Thanksgiving it got bad, and just never got back to that lower level I’d had. I take a neurotransmitter that’s gotten me out of bed and a little more active, just not where I’d like to be. The point being, there are different levels of fibro too, and a whole field of symptoms you may or may not get. My best friend has a slow-progressing form of MS and runs circles around me. I think people on the outside just don’t realize that. I also thought, during the 2012 elections with all the talk about Ann Romney – great – this is just going to do wonders for people who don’t understand the nature of these problems. People probably didn’t take into account either the level of personal care and support she was probably able to get due to her position and their income – someone to help raise the kids, cook healthy meals, drive her to appointments or maybe even come to her home. And perhaps even access to cutting edge therapies. It doesn’t take away from what she accomplished, but still, I wish she’d have come clean about the level of support she had, explained the varying nature of the disease when she came out, and just was more real about the things we all talk about which she surely experienced too. She could have done a world of good with her visibility.

    Anyway, I just wanted to let you know that others with invisible illnesses share your difficult journey and face the same process. Get the same well-intentioned (sometimes) maddening advice, have friends who assume that just because we say we’re feeling a little better, it must all be done and we can go out dancing. God help us make that the truth some day!!

  • 22much
    6 years ago

    So don’t be offended, please, because I’m coming from the same experience of the lack of empathy and unsolicited advice. I don’t know how people with MS feel or know about those of us dealing with fibro – we suffer much of the same pain, fatigue, fog, clumsiness, and most of all, misunderstanding – we are fortunate not to have a progressive debilitation, but our conditions still worsen and are usually ever-present. We don’t feel a lot of legitimacy, as there aren’t as yet any specific tests beyond blood mRkers and MRI results shown in tests. Anyway, I wanted to post to point out the irony that today I was asking my husband whether I should experiment with telling people I actually have MS, the fibro was wrong (sorry, really don’t mean disrespect) to see if all these people chasing me to take me to this naturopath or get me on that gluten-free diet, etc… Would people actually back off if they thought I had something legitimate, and believe that’s being taken care of by my physicians? Would they have a better sense of what to expect – that I’ll be tired, might cancel, might not seem present during conversation…if I just said I had MS, because it’s a more widely-known, accepted diagnosis? I know the difference in my understanding when someone I knew told me they had fibro vs my best friend getting MS. I knew what MS was and thought it was serious – I’d do anything to help and accept anything she needed to do to take care of herself. I hope I’d have had the same understanding with my fibro friend, but back then I thought it just involved sore muscles. Now I know it can actually evolve into the 9th gate to hell. I keep wondering whether the two are related somehow, or whether Fibro will soon gain the understanding and mainstream understanding that MS has, in coming years as the tests conducted in trials become available and affordable at the rheumatologist’s. I know 40 years ago or maybe less, no one believed in MS. It’s unfortunate for all of us that it’s really impossible for anyone, even those closest to us to understand what being in our bodies is like. Just try to keep a straight face, reign in the throttle-impulse with the less-shaky hand, and say, “hmm… Maybe I’ll look into that, thanks!” While it’s infinitely annoying to us, I think it really gives people a little bounce to their step to think they’ve helped us though. I just think it’s really ironic that the day I’m so at my wit’s end I’m about to lie about my diagnosis, that something somehow comes onto my screen showing y’all are in the same boat as far as the misunderstanding and lack of boundaries people feel they can impose on us. Take care all – and please don’t flame me for wanting to use MS for a day! I just thought there’d be more universal understanding. I’m sorry there isn’t.
    Blessings and 72 degree days forever…..

  • Sadie
    6 years ago

    You sound like a delightful person 22much! I’ve been thinking about the Fibro connection too, for a long time now. Now please understand that this is just my own extremely humble opinion but I don’t believe that Fibromyalgia is a condition ‘in and of itself’. I believe it is a symptom of any one or all autoimmune diseases. It’s just mind boggling and baffling that we all share such similar symptoms and they all sound so much like Fibromyalgia! I’m so discouraged by those constant words “there’s no definitive test”. We all hear that. I BELIEVE you and your symptoms. I truly believe that one day we will all find out that we all have Fibromyalgia along with our respective primary diagnoses. Gads I hope I don’t get a lot of hateful flack for saying all this but I’ve been wanting to say it for a long time. Please just know that if your diagnosis is Fibromyalgia…I BELIEVE YOU are in unspeakable pain. Bless you! (I have Primary Progressive MS)

  • Theater Geek
    6 years ago

    We were up in Michigan, where my husband is from, last month and his brother and father both told him that I only get hit by the flu like symptom side effects of Rebif because I sit around to much and don’t exercise or move enough. I honestly, even though it’s not like me at all, could have punched his brother in the nose! Especially since it was when I wasn’t in the room when they said it. Most people I know understand enough. The only other person I know personally that doesn’t get it is an aunt of mine. She asked me what type of MS I had because she has a friend that has it that can still work but I seem to have more problems. I explained to her that it’s different in each person…one can’t be compared to another it’s no cookie cutter.

  • wingnut
    6 years ago

    I too had the every other day flu from Rebif. My Dr took me off it and put me on copaxone. I’m not saying copaxone is right for you..but if you continue to have the flu symptoms you might want to try something else. If for nothing else the quality of life. There’s nothing worse than having your meds contribute to making you feel even more crappy than you already do.

  • Livingston
    6 years ago

    My favorites: Oh, I get tired too you know.
    Yeah, I know, we’re all getting older and forgetting things.
    I think it’s your imagination…..I haven’t noticed__________. I don’t think you have that problem!

  • MS Not4ME
    5 years ago

    The I know the feeling bit,herd that too many times to count.And when I was first dx I used to shoot trap a shotgun sport and I said to my father Dad I’m haveing trouble swinging the gun, and he said oh it cant be that bad, well at that time my symtoms cane and went you lnow rrms.Thank God he has pased and can,t see me like this b/c if he did he would be there for me always as so my dear mother may they rest in peace rest in peace.:(

  • TerrieK
    6 years ago

    I often think about the cancer commemts. My husband is a Stage 4 cancer survivor and is actually considered cured now! Thank God! He had Hodkins Lymphoma and after two years of being clear, the chances of returning are the same as if he never had it, thereby, the status of CURED. And thankfully he had it prior to my diagnosis or any symptoms had developed.

    I, as I’m sure many of us MSers feel, especially in the midst of major pain episodes, wish we would die. But the fact of it is, most of us won’t die of MS. Instead we live our lives on the roller coaster of the MonSter, knowing these things, it degenerative, we won’t get better, and no one can provide a road map. Months, weeks, days and even hours are different.

    Personally, I’d rather have cancer. At least then, I’d go through treatmemt, it would either work or not. Simple as that.

    My diagnosing neuro also told me at the hospital, “Good news is, you don’t have a brain tumor. You have MS”.

  • Daniel
    5 years ago

    In my almost 16 years living with this illness, I have had the same thoughts about having cancer rather than MS. When I started novantrone for MS, a chemo agent, I looked around the infusion room patient and wondered how many would trade places with me. My brother, who was with me at the appointment, said “not many”. I would have traded places instantly.

  • Ashley Ringstaff moderator author
    6 years ago

    I totally understand… I mean yeah… It could “always be worse”… but the way I see it… and this might come off the wrong way – which is NOT my intention… but with those who have cancer… they aren’t usually thinking what it’s going to be like to deal with it the rest of their life because it usually doesn’t end well with those who have certain cancers. I hate that anyone suffers at all – but in a way – I think their lucky because they won’t be suffering FOREVER with it… Does that make since?
    Like with MS – it’s not “known” to shorten our lives… and their is no cure… so as people with MS – we have to think about further in the future than cancer patients.

    and in NO way am I trying to say one or the other is less serious or less painful – it’s just how I view it in a way.

  • Chrisite
    6 years ago

    Funny you should say that because that’s how my neurologist who diagnosed me told me I have MS. The first words out of his mouth when he entered the exam room that day were, and I quote, “Well, at least you don’t have cancer.” Even now, thinking of it leaves me speechless.

  • MS Not4ME
    5 years ago

    Yea the at least Word!

  • Chrisite
    6 years ago

    I’ve also heard additional comments from people closest to me, some of which are even more cruel and hurtful. These include, but are not limited to, the following: You deserved to get MS because you’ve been so mean to your spouse all these years. (My mother.) When is your Grandma going to stop faking MS? (My daughter in law to my 2 elementary school aged grandsons, who shared this with me tearfully while I was driving them to school. They were 9 and 10 years old at the time.) You’re always using your MS as an excuse for why you don’t do what you say you’ll do. (My former housekeeper turned “friend.”) I’m not interested in learning or hearing anything about your MS. And I am not going to do anything to help you.(My husband of 40 years. We are now separated, pending divorce. Prior to the filing, he cut off my health insurance coverage and removed me as his beneficiary on life insurance. He also retired and went on Social Security, leaving him with an income low enough to avoid an order of spousal support in any amount.) Silence. No response to voicemail or email messages. (My even longer-time former “best” friend of 20 years, who had previously “warned” me that she was getting tired of my not “making the first move” to call, get together, etc. though I’d told her I was frequently too tired to even do that. The final cutoff happened right after I’d called her to tell her how I’d been horribly mauled by a neighbor’s off leash dog and was in the hospital for an infection they couldn’t get rid of. After twice weekly physical therapy which is still ongoing, I still haven’t regained the use of one hand. I did leave voicemails 5 times in the ensuing 6 weeks, none of which have been answered, and sent several invitations to dinner and lunch, all to no avail. By now I’m pretty sure she’s carrying out her threat.) You probably don’t really have MS. You can read right on the Internet that the Aspartane in all that diet soda you drink mimics ALL the EXACT SAME symptoms as MS. Just stop drinking diet soda and you’ll be fine. (A person who came to my door wanting to come in and share her religion with me when I came to the door in my robe at 1:00 in the afternoon and declined to let her come in and “chat.”)

  • Livingston
    6 years ago

    OMG, you poor thing!!! What a series of things to happen.
    Shame on your daughter in law. I feel sorry for her kids and your son! Wow. What ignorance and lack of empathy. I do believe in karma. Have to. When you go to court for your divorce, hopefully the judge will see thru your husband’s ploy. As for the neighbor’s dog: I love dogs. LOVE THEM. However, the neighbor needs to be held accountable for the dog’s actions. i.e. LAW SUIT. That could help w/ your husband’s lack of financial support.
    I hope and pray things turn around for you – and you find more supportive, friendly people in your life!!

  • Ashley Ringstaff moderator author
    6 years ago

    Okay – I have no words for everything you just shared. I’m SOOO sorry you have been death the hand you have – especially for the way those around you have treated you! The only thing that I can say to those who treat us badly… is Karma will get them sooner or later!

    Stay strong (I know it seems impossible at times) but you have everyone else that lives with MS as well, to support you or just be there for you, when needed. If you ever wanna just chat or anything w/ others – you should try msworld.org – that’s where I went after I was diagnosed and am glad that I did. It’s nice to make friendships with others who “get it”.

    xoxo

  • Chrisite
    6 years ago

    Hit submit before I finished. The religious lady had been peering in to my apartment over my shoulder and seen the piled up diet Coke cans on my coffee table that I’d been too tired to get up and throw away.

  • Shana
    6 years ago

    You don’t have M.S. You just like to make excuses so you don’t have to do things.

    The worst was the M.S. nurse practioner saying “just because you have pain all the time doesn’t mean it’s from M.S. Everyone likes to blame M.S. for everything”.

    REALLY? I won’t be seeing her again. I did tell my neurologist about what she said and how she acted towards me. He said some people like her and some don’t. I like him a lot. He said he’d make sure I always see him and never see her again.

  • Ashley Ringstaff moderator author
    6 years ago

    Oh wow! I mean, I get where that remark was coming from… because I’ve learned that not everything is due to MS… but there are ways to go about saying that to someone… Glad you are only seeing your neuro from now on!

  • tesoroms
    6 years ago

    Yes, I have heard all of these comments in one form or another. They are frustrating and demoralizing.

    I became so depressed over the limitations that were imposed on my life as a result of my latest MS attack that I tried to find someone to talk to that would understand and would take me seriously. I didn’t know anyone else that had MS. Groups were not my thing or so I thought. I had been so used to the being stoic and proud that I didn’t want to disclose face to face that I needed to talk about my challenges and feelings.

    I finally gave in to online where people with MS share their experiences, vent, feel sorry for themselves and reach out for validation that they are not alone. We forget that there is more than just the physical part of MS that challenges us. Depression, lack of self worth, confusion about our identity, loss of pride, loss of identity, financial problems, relationship problems etc etc. Those intangible challenges and struggles that can’t be cured through medicine are the most difficult part of living with MS. Forums like this one has been a great way to validate what I am going through because there are so many people who are experiencing the same things that I am going through. It is one of the strategies that I am using to lift me out of my deep depression.

    Thanks to those who are vulnerable and honest enough to share their feelings and experiences through their posts. Reading your posts and sharing mine is a big part of my MS NON drug therapy.

  • Ashley Ringstaff moderator author
    6 years ago

    I couldn’t agree with you more! Blogging is my way of “venting” in a way… I found out (the hard way) not to hold everything in.

    I also didn’t feel comfortable enough to attend local MS meetings – so I too found support online at MSWorld. Now there are so many wonderful resources out there, including this site right here, that I am beyond grateful for!

  • Deb
    6 years ago

    Two more that have got to me.
    You must not be taking your meds right my friend isn’t as bad and I have an Aunt who claims she has MS but doesn’t she just uses it as an excuse because Drs can’t prove she doesn’t it is easy to make up. Oh and one more I have recently started using a hover round chair to get around and been told how nice it must be ta have a chair to get around….

  • obiwan
    6 years ago

    OMG.From the story: ” … they don’t actually want to know how I’m felling ”

    Good to know that I am not the only one who has trouble with certain words (like “feeling”).

    Keep up the good work.

    I used a Crayola computer keyboard which has jumbo and colorful keys. Broke it during moving recently. Have to use a standard keyboard for now until I can get to Fry’s.

    The keys are so small!

  • lalyhe
    6 years ago

    I was just diagnosed with MS in January of this year (2013), at the age of 43 and feel like things have been going downhill ever since. I think the things that get me the most are when people feel the need to tell me stories (or send me articles) about other people living with MS and how “they don’t let it stop them at all”. Since diagnosed, I have had to learn that I do have certain limitations in the things I do. I do push myself in certain instances, like walking thru the grocery store – and it does take me a little longer when I’m done to recover and gain strength back in my left side. I’m very happy to hear the stories about how “so and so” is doing so well with MS, they are not me! People really need to understand that MS is a disease that affects every person diagnosed with it in a different way. Thanks for listening!

  • Ashley Ringstaff moderator author
    6 years ago

    Oh I completely understand where you are coming from. I think a big part of why I started blogging in the first place – was because I couldn’t relate that much with things I had seen published. And there are some things out there that are just too… “scripted” for my liking. That’s one thing I enjoy about my writing is that it’s right from me – no filter… everything “real”… ya know?

    xoxo

  • elke mayer
    6 years ago

    I was diagnosed July 2012. I follow a whole food diet ( gluten free, dairy free) exercise 5-6 days a week, practice yoga and meditation. I always listen to my body if it needs extra sleep or relaxation. I do not have children so it is much easier for me to give myself extra time whenever I need it. Although, I do have a “fur” person. =) Animals are a wonderful addition to our souls. I take copaxone once a day injection as I started that in July of 2012. I live in the Northeast, so we get a heavy amount of winter months. I take extra Vit. D : 10,000 IU’s a day if need be and keep my Vit. D levels around 100-150. I also take B12 shots once a week. Along with a vitamin regime. I am a strong believer in the power of the mind and healthy living. I understand MS is can peak it’s nasty head whenever it feels, but with that said, I get up everyday and am thankful for each day I am healthy. We can only do the BEST we can as MS is a bio individual disease and it affects each and every one of us differently. Just keep smiling and continue to do the BEST you can…. Live in the moment and cherish all that is around you.

  • Ali
    6 years ago

    Great article. Once a 5’9″ fashion queen, I decided to switch to sensible shoes to keep my legs from tiring and to prevent tripping. I’d like to add… “You’re wearing those shoes??! They don’t look good with that outfit” to the list.

    Here’s another – “Why don’t you just get a flu shot??” from the people who don’t understand that our immune systems are weaker (I’m on Gilenya). And yes, I can catch your children’s colds, so it is a big deal to teach them to cover their mouths when coughing or sneezing, especially in public.

    Just proves we need more MS education, especially in the workplace.

  • Chrisite
    6 years ago

    I’m on Gilenya too. I’ve told my son and daughter in law many times how my immune system is compromised and asked them to let me know if one of them is ill before I come over (I drive their kids to and from school because I live 4 blocks away). Not only do they not do so, and I got the flu so bad the last time that I nearly died, but this fall she got the kids their flu shots and didn’t tell me that the one boy got the LIVE vaccine (the nasal one) the morning before I picked him up at school a couple hours later. He told me about it as soon as he got in the car and promptly began sneezing without covering his mouth and nose. Just wow.

  • Cheryle
    6 years ago

    Reading this article and folks that have posted, it sounds like everyone here has MS? LOL J/K

    Which reminds me of what I was going to post…
    I hate when someone says “I have a relative, friend etc who has MS” upon finding I out I have MS.

    No one can ever ever ever know what it feels like to have MS unless they have MS.

  • Ashley Ringstaff moderator author
    6 years ago

    “You don’t get it… till you GET it.” lol I think Montel Williams said that – I’m not positive… but I love the quote!

  • Sassy
    6 years ago

    Good evening! I was diagnosed March 16, 2004. Everyone that I have ever talk to always knows their date that they got diagnosed. Well, my birthday is March 26th. We normally don’t get together for birthdays but I insisted my 2 sisters and my brother come over for cake. I then told them about my diagnosis. My one sister then states and I quote “oh you just need brain surgery and you will be fine. So and so back home had brain surgery for her MS and she is fine now.” I explain that there is NO surgery for MS and if so and so had brain surgery it wasn’t for MS! That has been 9 years ago and I’m still trying to educate my family and I think it’s getting to the point they rather stay away. But that’s for another comment. Have a great day!

  • Ashley Ringstaff moderator author
    6 years ago

    I’m sorry you have to deal w/ that kind of attitude, especially from a family member. I think some of those close to us, just don’t want to really BELIEVE we have MS… Kind of like if you don’t believe it, it’s not true…?

  • oldtimer3
    6 years ago

    Haven’t seen no mention of Montel Williams and his smoking weed cure all. We use to get that when we still had some good weather friends. Speaking of family staying away, her Mom lives 5 minutes away and comes by once a month sometimes…

  • jfalasco
    6 years ago

    I am only 6 months into this diagnosis and there are only a handful of people who know I have MS. The three oddest things I have heard thus far are…

    1. “You know you’re not going to get better, right?”…this was in response to my efforts to maintain a positive mentality in the MS insanity.
    2. “You won’t die from MS, you’ll probably end up with cancer”…this was supposed to encourage me. My aunt died from MS complications in 2001.
    3. “It’s a good thing you lost that weight (75 lbs), it will help your husband deal with you when you’re in a wheel chair”…had to laugh at this one.

    All true points, albeit, a little rough on the delivery. Some days, you just have to laugh (smirking also helps).

  • Ashley Ringstaff moderator author
    6 years ago

    Or you could just keep duct tape handy for those who should NOT open their mouths in the first place??? lol

  • Elizabeth
    6 years ago

    I always hear, “But you don’t look sick. How long have you had MS? But you aren’t in a wheelchair.” Seriously?! Sometimes I wish I had a t-shirt that says, “Yes, I have MS” and on the back have a list of my symptoms. When people tell me about their pain I tell them it’s a different type of pain. It doesn’t bother me that much but it can get annoying.

  • Ashley Ringstaff moderator author
    6 years ago

    Yeah, I can feel you there.
    Just because it doesn’t “look” like I’m “sick” doesn’t mean anything.

    For one, I’m stubborn and I don’t like to show a weakness, for two… not all pain is visible. And how can someone SEE if you are fatigued… or SEE your cognitive issues…

    SO FRUSTRATING!

  • FriendhasMS
    6 years ago

    My dear friend has MS so I want to respond to this posting from an outsiders view, so to speak. Sometimes when your friend or family member or co-worker, etc., are diagnosed with something that is potentially serious, it can be a fearful thing for those who care about them. That fear often translates into sometimes really stupid seemingly insensitive questions. It’s not always from a uncaring heart–it’s sometimes from someone who so desperately wants you to be OK, or well. They minimize what you say just to cope with it. That’s not true in all cases, I know, but it’s something to keep in mind. It might not hurt to ask that person how they feel about your diagnosis. Start that conversation.

  • Ashley Ringstaff moderator author
    6 years ago

    That’s a good thing to think about … and I can say that when people who are close to me that are showing their true concerns for me, I’m not aggravated by them.

    It’s the people who I would classify as “acquaintances” that can’t keep their comments to themselves, and those are the people that usually seem to be repeat offenders in making rude comments.

  • Elizabeth
    6 years ago

    I don’t really think about it from that view point. Thanks for your comment!

  • Kim
    6 years ago

    I was diagnosed with MS years before I had children. My decision to have my sons was not taken lightly, and included speaking to several doctors. I have NEVER regretted my decision, but was amazed by the number of people that questioned my decision. And that was just the ones that voiced that to my face…imagine how many questioned my decision behind my back!

  • Tim
    6 years ago

    You forgot: “I have a neighbor with MS. She runs three miles a day and golfs twice a week.”

  • Chel Rae
    6 years ago

    Ahh, if I had a nickel.
    My favorite was when people tried to talk to me about Ann Romney. I’m like, a.) f- Ann Romney, and b.) how dare you make ANY comparison between her and I. She can afford the best healthcare money can buy and can hire people to take care of every aspect of her daily life. Being rich with MS is an entirely different experience and one which is quite frankly, insulting to compare to that of the everyday individual.
    As far as the diet/herb/medication thing goes, it only really gets to me when it’s the holier-than-thou vegan hippies with no health issues, who think that everyone’s problems can be solved with their (often abysmally unresearched) idea of what is healthy. I’ve had people like this literally tell me I’d end up disabled if I kept eating meat, or ask why I worry about health insurance when all I need is a vegan diet and a good yoga regimen.
    For the record, a good yoga regimen is great- as is a diet free of crappy, processed foods. I practice both. But that’s not going to cure me, nor will it make my future any less uncertain, and anyone who says otherwise is selling snake oil.

  • Chrisite
    6 years ago

    RIGHT ON!!! On everything you said.

  • Marilou Hatler
    6 years ago

    One I hear from my family is, you were fine before you started taking all those meds. Just quit taking them and see how you are then.

  • Kspringer79
    6 years ago

    omg. I hear that one from my mother ALL.THE.TIME.

  • Marilou Hatler
    6 years ago

    Two comments that really get under my skin are “you sleep too much.” and “You need to get more exercise.” For some reason these comments just about make me cry.

  • Candice
    6 years ago

    I’m 100% in agreement with April and Bettie (below). I also have taken the diet approach to managing the MS and I know these things: I’m down from a size 3xxx to a size 16. I’ve started walking and dancing again, at least 1 hour every day. (Biking will come later, April!) When I was diagnosed in 1994, my aunt said, “I know a lady at church who has MS and she’s doing just fine.” Nineteen years later, that “just fine” lady is in a nursing home, almost completely paralyzed and extremely angry. With my plan, I’ve succeeded in getting my A1C down to a 5.2 (below normal) and look forward to actually resolving my steroid-induced diabetes. Also, my bladder had been almost destroyed by the MS, but through sheer strength of will, determination and lots of prayers, I was able to lose the SP catheter after ten years of having it. Also I ditched the wheelchair after 8 years, and only use it when I go on long shopping or sightseeing trips.

  • Joann
    6 years ago

    I hear from a close friend w/ MS that she get’s that comment all the time.
    Oh you look so good.
    Have you lost weight? You look great.

    I don’t have MS but she does & that really bother’s her. I say nothing & let her tell me how upsetting the comment is.
    Thing is I just sit & listen to her & don’t say a thing unless it’s warranted.
    I always say if I hear someone say it, “walk in her shoes for one minuet & tell me how you feel.
    I would not say this in front of her. I would comment later when she is not around. I can’t understand everything because I am not going through it but I could be there for her. Simple yet very helpful.

  • Finerdreams
    6 years ago

    I always hear, “But, you look so great, it’s hard to believe that you are ill”.

  • scott
    6 years ago

    The first reply insult I got from an eye doctor.. He said u cant have MS, youre Black… Black people dont get MS.. IM in Georgia where ignorance is very fruitful… The second insult I got was Wheres your wheel chair. U had it the last time I saw u .. a yr ago… Same dumb person again Wheres your rolling chair? and smiling at the same time. so I avoid this ignorant person and her whole family when ever im out…of the house….Other ignorant family members. aww u just putting on to get a disability check.. wheres your chair? while laffing….

  • Ashley Ringstaff moderator author
    6 years ago

    I don’t know how you handle that. Some people are so close minded, it’s ridiculous. At least you know who is more educated between you and those people… and it obviously isn’t them!

  • wooberry
    6 years ago

    my biggest problem is when people say well i know other people who have ms and they dont act like that

  • Annlnt
    6 years ago

    My mother in law said that to me. She has a niece with. MS, and she is “just fine” with her MS. Really?? I think her niece just tells her she is just fine, so she doesn’t annoy her. People are so insensitive. MS has made me to be more understanding of others with disabilities.

  • Maribeth
    6 years ago

    I think I checked every box except one. Right now I am dealing with horrible fatigue and pelvic pain. I have people say to me I know what you mean by being tired because they are. I say to them, in a nice way, really, you sleep most of your weekend away too?! Then they tell me I must not be doing something right. I just let it go. Also, I have noticed with pain that because I have a high tolerance for pain and don’t like to show when I am in pain that my doctor doesn’t believe me when I tell him how horrible it is. Very frustrating.
    I have gotten better at either educating people or just letting it go. The doctor I am still working on. I am my own worse enemy though because I have gotten good at hiding how I am feeling so when I do have a bad period as I am right now then people try to understand but don’t get why I am not over the M.S. flare up/change. To me it has become a learning process not only for myself but for people around me.

  • Ashley Ringstaff moderator author
    6 years ago

    I can totally feel you on the “high pain tolerance” thing. I’ve been a ‘walking accident’ all my life, so my pain tolerance is higher than most, so when people rate their pain from a 1-10 at a 10, mine would probably be a 5 or 6…

    I also tend to keep how I’m feeling inside, I don’t like to “voice” how I’m feeling to anyone, because I don’t want anyone to pity me. So, that’s when I started writing… and it turned in to blogging. I still keep my personal journal though, that way I can vent, but I’m not letting others know what’s going on.

    I don’t keep it from my neuro though – because he has been so much help when it comes to me feeling better and getting away from all the pain.

  • LAC1120
    6 years ago

    How about “You look O.K. so you must not have it that bad”
    That, to me was classic!!!

  • Wendy
    6 years ago

    Before my first exacerbation, I had little knowledge of MS- the Disease, so I try to remember that most people don’t know much about it. I try to do a little educating when someone makes a comment like those mentioned. Heck, even I don’t fully understand the disease and everyone with it is different! One thing that’s hard for others to understand is that even if they find a vaccine that will prevent the disease, those who already have residual damage still have to live with it. I think most people are well-meaning, they’re just uninformed. Frustrating, though?? A resounding Yes!!

  • Ashley Ringstaff moderator author
    6 years ago

    Oh I totally agree, but the thing is… I don’t feel that someone should make those comments, if they don’t understand what MS is, and what it does to someone, etc.

    I try and educate as much as I can as well, but it’s for one, hard to explain to some people at times, and for another… I think some people just like to give their 2 cents on anything and everything…

    🙂

  • Margaret
    6 years ago

    Ashley, I was nodding vigorously with each statement you made, One you touched on, but the survey didn’t include is “well, (someone else) has MS and she can still (whatever).” I heard it a lot when in 2012, during the Presidential election. “Mrs. Romney has MS, and she is still riding her horse every day.”

    Good for her, but WE AREN’T ALL THE SAME!

  • Ashley Ringstaff moderator author
    6 years ago

    Oh I know!
    I mean, I think it’s great for those who are very active and can live their lives with out any (or many) reservations to their activities.
    There is nothing wrong with that… but I don’t like it being rubbed in my face that “so and so” can do this, and I can’t… UGH!

    I mean, okay… a stranger, they probably can’t tell “something” is going on w/ me on first glance… but that doesn’t mean that I’m not in pain, or they just not be paying close enough attention… ya know?

  • cathy
    6 years ago

    i was diagnosed about 8 years ago after years of balance issues ,dizziness and fatigue
    after being diagnosed my mother in law had the gall to say to me – it is no big deal – i was floored – as she has seen the meds i must take , the problems i have had to endure – she seems to have changed her tune somewhat – but always brings up a friend of a friend who seems ok – well good for her – maybe i have a different degree of MS and she has a lesser degree of MS – there are 4 stages – as we all know – i personally know 3 people in 2 different stages – some numb from the waist down and have to live in wheelchairs and then some can walk with assistance – we are all different – walk a mile in my shoes and we will talk – my own sister belittles me – but my other sister in the medical profession – she knows the score and helps me at any turn answering my questions and helping me out – it is a day to day battle we all must fight in our own way

  • Suzzie
    6 years ago

    I can relate to you on this topic. my neighbor has a friend who’s friend has MS going on TEN years now and she takes no meds and shows no sing of being sick. I hear it every time we talk or I have family that tell me all the time that they have it..lol you never had any test’s done I say and I get well no but I know I have it along with my brother’s. get’s old hearing it. I am the only one on record with MS in the family.

  • jacqui hirsch
    6 years ago

    I think your mother-in-law is in denial

  • Ashley Ringstaff moderator author
    6 years ago

    See I think that people don’t understand that we are all suffering in different ways, because of where we have attacks at in our Central Nervous System…

    I wish more people could revert back to that famous saying… “If you can’t say something nice… DON’T say anything at all!”

    I think if some people just experienced a couple of our symptoms (not all), but just a couple, they would have a reality check.

    I said, not all, because obviously it’s a lot to get used to, and I don’t think a lot of people could handle what we handle.

    I’ve heard that MS patients are one of the most educated patients out there! And I love hearing that… especially from physicians!

  • jacqui hirsch
    6 years ago

    I choose to refer to myself as “someone who happens to have MS” rather than “MS PATIENT”!

  • Jess
    6 years ago

    I could check off half that list! People are always saying if I just exercised more or had been exercising all along that my walking would be so much better today or that they knew someone with MS who was in a wheelchair but now walks five miles a day. This just makes me feel worse that I’m not doing enough! Someone once told me that it’s because I drink coffee that my walking would be better.

  • HilSny
    6 years ago

    Yeah, I feel ya! I worked in the fitness industry for over 10 years, and was very fit and athletic in school prior to being diagnosed with MS. My life has made a 180! Sure, I still “look” as fit as I always was. But, WOW, my body feels like I’m 80 years old! People just cannot grasp this, not even my immediate family. I think they are catching on a little more now, since it’s been nearly 10 years living with MS! But that whole “But you look so good” thing had made my life very difficult. I want to be happy that I look good, but sometimes I wish how I felt would show in how I look so that people would be more considerate of me and not judge me incorrectly. 🙁

  • Ashley Ringstaff moderator author
    6 years ago

    I have heard that plenty of times… the thing is, we’re all different with our MS, hints by previous post about being “unique” with MS…

    I love the quote “You just don’t get it, until you get IT…” Even with all of us having MS, we get one another, but we aren’t the exact same.

  • TraeLynn
    6 years ago

    The most frustrating thing for me is ‘The Look’; the look of pity. My symptoms are “discreet”, so it’s always a surprise when someone learns that I have MS. I don’t want to be treated differently, like I’m fragile or contaigeous. Don’t feel sorry for me; my life is filled with many blessings that MS can’t take away from me. MS doesn’t have me, I have MS.

  • Delinda
    6 years ago

    Oh yes! The head tilt… “How are you feeling.”they ask. “fine,” I respond. Then the head tilt and they say, “No, really. How are you?” I wonder what they would say if I responded, “Really, considering I have a chronic debilitating illness that will only get worse and put me in a wheelchair but most likely won’t kill me but I might prefer it would’ I’m doing just fine.” But instead we all just say, Thanks for asking but I’m fine.” because that is so much simpler.

  • Gale L
    6 years ago

    What a maddening list that is! Each one of those comments / suggestions / cures / whatevers must come up continually during the day, only changing who repeats them and who has to listen to them. Again and again and again and… @.@ Yes, we start to look extraordinarily silly, what with rolling our eyes at one then another then another after that.

    I think that the two things keeping me sane is living in a place with a horrendously hideous language that I do not much understand, so I don’t have to go out in public with most of those twats who would feel as though they know better about my health than doctors do.

  • April
    6 years ago

    I have MS and the only times I have been frustrated by someone’s remarks is when they push the medical field mainstream treatments on me- I will have to say those who suggest no gluten, no sugar, no meat are your friends! I believe I am conquering MS through diet! We are trusting medicine that doesn’t really even help over countless testimonies where natural alternative methods do help. I was so so grateful when someone suggested I kick the medicine and take control of my health a different way. The best advice is to not accept your disease. I went to a MS support meeting once to suggest and share how I have chosen to live and they were not interested- they just wanted to sit around and feel sorry for themselves and talk about how miserable their lives were. Not interested. I went home and drank my hemp seed avocado shake and went on a 10 mile bike ride with my kids. Before I learned about diet I was unable to walk up my stairs I was so weak. So, no more feeling sorry for ourselves- stop taking the medicines that big pharmaceutical companies are paying our doctors to endorse and live life differently. I can’t even begin to explain the difference I feel now.

  • Rightie
    6 years ago

    “” “He often chose falsely in his desire to find real trust and compassion in men, only to return with a heavy heart to his faithful dog again. He was absolutely alone, with no single friend of his own kind to comfort him…” “”-Nietzsche

    I can understand not feeling sorry for yourself but compassion is one of the greatest gifts we have. Saying people who are awkwardly searching for understanding in meetings with strangers are just interested in pity parties saddens me. For some they just have no one else who understands, compassion is the basis of morality. In most cases these are newly diagnosed individuals who are seeking guidance, sometimes that turns into desperation as they grieve for themselves with no outlet. Moral behavior consists of an intuitive recognition that we are all manifestations of the will to live. Being confident is being assure of yourself and being prideful is feeling that you’re above other people.

    Pride: The inordinate love of self — a super-confidence and high esteem in your own abilities also known as vanity. Pride fools you into thinking that you’re the source of your own greatness. Pride makes people believe that they are better than everyone else.

    Loving yourself is NOT wrong. In fact, it’s healthy and necessary, but when the self-perception no longer conforms to reality, and you begin to think that you’re more important than you actually are because after you believe that you’re more important than you actually are, you compensate for it when others don’t agree with your judgment. You rationalize your behavior and make excuses, because no one understands you like you do. In your mind, you’re underestimated by the world.

    “””I went to a MS support meeting once to suggest and share how I have chosen to live and they were not interested- they just wanted to sit around and feel sorry for themselves and talk about how miserable their lives were.””” -You. (Basically, you went to talk about yourself but they wanted support at a support group. How dare they!)

    In speaking of self-pity as a bad trait of character, one must not give the impression that there is anything wrong with pity itself. Pity is a great virtue, but it is that virtue by which one has compassion on the sorrows and sufferings of others. Rightly acquired and cultivated, the virtue of pity leads to the works of mercy, such as feeding the hungry, clothing the naked, giving homes to orphans, and supporting those in need etc. The comments in this article resemble those support meetings. I see no one wanting attention just understanding and compassion.

    Also let me say this is no attack. I admire your strength to take control of your own destiny. Instead of pride maybe humility is best.

  • cathy
    6 years ago

    oh i hate when they suggest a pill or shove some article in my face – look i work closely with my doctors and we are doing what is working for now – as long as the meds keep some things at bay – i will deal with the side effects and such – it is a day to day battle we all must fight

  • Bettie
    6 years ago

    I totally agree. I cannot allow myself to be with any pitty-pots. I just keep trucking and use the diet. I must admit I do cheat at times. I really am use to eating fresh fruits and veggies. when I go out many people say have some of this and that but I now just say I am Vegan so they do not impose their wishes on me and no explaination is needed. I gave up all meds and love to Garden, wald my little dog. I have had MS over 35 years and refuse to go into a wheelchair so far it has worked for me. The diet is a killer at times but it works for me and pushing through to excersise is work again I agree do not give up and do not be with stressful peopsons. They are another part of my diet that I have given up. Good luch to you a sI am with you 100%… Bettie still trucking and 72

  • Bettie
    6 years ago

    Sorry about my terrible spelling…

  • Wobbilygirl
    6 years ago

    I think the most frustrating thing is explaining my medication choices. It is difficult for people to understand that our daily shot or pill does not “cure” us. Doesn’t Insulin make diabetics feel better?…”What about high blood pressure meds…those work great for me, my pressure is almost normal now..why doesn’t your shot make you feel better?”

    I have found it easier to just keep my choices to myself..whether I choose to be on my meds at a certain point of my life…or to stop taking them for a while…just because I can’t take the side effects for one more day. I don’t mean to sound rude but after years of treatments, symptoms, pain and side effects..at the end of the day, the only one who has to be at peace with my choices…is me.

  • mattysheets
    2 years ago

    Yes to all of this, and what about the “oh wow you lost weight” or “oh wow you gained weight”? People are so insensitive, but I know for a fact I will never be insensitive to another human- no matter WHAT they are going through, and no matter WHAT they look like.

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