You Can’t Compare…

You Can’t Compare…

Okay – I’ve had this on my mind for a while… but it’s really started to bother me more and more lately. What am I referring to? What I’m talking about is when healthy individuals try to compare what I go through with my MS with something they have dealt with in the past.

Let me just get one thing straight about this… Notice how I said that people try and compare what we go through every day with something that they have dealt with in the past. That plays a big factor, when you’re trying to compare two completely different situations.

So, here are some things that I have had people try and compare ‘symptoms’ with me in the past:

Fatigue – So for those of you who have MS, you know that MS fatigue is something on a whole different level to, “I’m tired”. Because if someone is tired, exhausted, sleepy, etc. They take a nap or get a good night’s sleep, and they are back to normal the next day, more than likely. Now I don’t know how to get it through to people that my fatigue from MS, can’t be fixed like that. I can get a full nights rest and even have a nap during the day, and still suffer from MS fatigue. So there is no comparison to that, no matter how hard the person tries to prove otherwise.

Weakness – Now, the weakness I suffer from, is due to damage done by MS. I also have weakness/heavy limbs when I’ve done too much, or for instance, if I walked or did a lot a certain day, my leg will feel heavy and tired and achy. I’ve had some people try and compare this to when they workout and are experiencing weakness after their workout. I’ve experienced both, and they aren’t the same thing AT ALL. I haven’t dealt with or come in to contact with others, who work out or run a lot, then have their foot literally dragging because your body just can’t compute to pick up that leg.

Insomnia – “Well, if you suffer from MS fatigue, how can you suffer from insomnia?” That’s a VERY good question I wish I had an answer to. But basically, I’ve been productive throughout the day, as best as I can be, and at night my body is exhausted and I’m still fatigued, but I just can’t sleep. Sometimes there is no reason for me to not be able to sleep, but other times, it’s because I’m in pain from carrying out my daily activities.

Pain – Now this is a tricky one. Everyone has experienced pain in his or her life… but to what extent? Personally, my most common form of ‘pain’ is neuropathy aka ‘nerve pain’. This isn’t something that is easily explained to the general public either. For most, if they’re in pain… they take a pain reliever… but with neuropathy, pain relievers don’t help relieve it. I am on medication to help manage my neuropathy, but it wears off as the day goes on. So when it’s later in the evening, my nerve pain is rearing it’s ugly head, and there isn’t a whole lot I can do for that.

Numbness/Tingling – So this can kind of be classified in the neuropathy/pain category, but what I wanted to point out differently is that, when we have a numb/tingling limb or something like that, others try and say they have experienced that as well, like having a foot “fall asleep” or something like that. The difference, they get the feeling back in a short period of time. People with MS… it’s not that easy.

Those are just a few of the symptoms that I have had healthy people try and compare with me. Now, I’m not talking about the people who are actually compassionate on what we’re going through on a day-to-day basis, but just those “know it all” kind of people, who have to bring the focus back to them.

My mom had surgery again on her shoulder at the end of last year, from a torn shoulder. She is of course, still in a lot of pain from it… and she said to me the other day, “I don’t know how you deal with the pain that you do every single day… I’ve been dealing with this one issue and it’s driving me insane.” So, yeah… not much I can do about it, but it all around just blows.

One thing that REALLY bothers me… is when someone finds out I have MS and they say, “Well at least it’s not worse. At least you don’t have Cancer or something.” Yeah, it could be worse, I completely understand that. But that doesn’t mean that what I go through everyday isn’t hard. You can’t compare MS to other diseases/illnesses. Especially something like cancer.

What’s the point of this whole rant? Anyone who has been diagnosed by any kind of illness has their own unique struggle each and ever day. Heck, even all of us who have MS, we all don’t suffer the SAME exact thing everyday. But if you’re a healthy individual who doesn’t have to deal with what we do on a daily basis, please keep your thoughts to yourself, mainly when it comes to the things I wrote above, or on my article “MS & Things People Should NOT say”.

I know we all learned this growing up and I think a lot of people now a days need to keep it in mind… “If you can’t say something nice, don’t say anything at all.”

xoxo

Ashley Ringstaff | Follow me on Facebook |Follow me on Twitter

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (35)
  • Catgirl66
    4 years ago

    You are SOOOOO right! People just don’t get it! For example, I have a bunch of patients who REALLY like their pain pills, so they ask for them a lot, saying they have “neuropathic” pain. And I’m like, “Really? Because I have neuropathy from MS and narcotics actually make me hurt WORSE!” Okay, so I guess I’m doing the same thing I complain of, but it gets old in a hurry having people try to compare their symptoms that will go away with time & treatment to something that I’m stuck with FOREVER! end of rant:0

  • Ashley Ringstaff moderator author
    4 years ago

    Feel free to rant away with me 🙂

    I know what you mean by all of this – I just think to myself sometimes, “Really????”
    Like I want to know what goes on through these peoples heads – and what there thought process is.

    Anyways! Be well – Glad you enjoyed the article! I’m always here if you need me! xoxo

  • Lowdramamama
    5 years ago

    Thank you Ashley once again – for putting “out there” your MS comments! I was dx’d w/MS 1985, age 25- & IMMEDIATELY put those two letters in my DENIAL-DO NOT HAVE IT-NEVER WILL MENTION IT FILE! And until 2010 – never had seen a 2nd neurologist or followed up on my MS. AND IN 2010- actually went to an MS specialist & was dx’d w/SPMS.
    I EXPERIENCE EVERY SINGLE SYMPTOM YOU DESCRIBED — and what you wrote made me feel SO relieved!
    I too HATE IT – when my 80 y.o. Mom-in-Law, or my 77 y.o. Mother – actually say things like “Well the heat really bothers me too”, or “I trip ALL the time” — well I am 53!!!
    I am sick & tired of feeling GUILTY and I feel that every function I don’t attend due to some random MS THING…people hear as just another excuse from me…because I am so “unreliable”! And when I hear, “Well you graced us with your presence today!” I just cruise past that remark.
    And I am not shy about telling someone I’ve just met (like my seat mate on a flight today) – who asked me what I did for a living… I kind of sat there – and then I said, “Well – I would say “Domestic Engineer” but I’m no longer super domestic & certainly no engineer! I have MS and it’s definitely taken working options off the table.”
    And in that situation – I felt like it was great timing to say that – because MS is SO misunderstood. If he’d asked I would have simply told him that my body was attacking the myelin in my brain which is what covers the nerves in the brain…and then it interrupts the signals the brain sends to the body – and whatever nerve is affected – WILL manifest itself in some way in the body. Kind of like having a short in your OS. And then if he were to have asked any more… My reply would have been GOOGLE IT!
    Thank you again Ashley & to all the other contributors. You guys make me feel a little less loco! 🙂

  • Ashley Ringstaff moderator author
    5 years ago

    Lol a little less loco… love that.

    I know what you mean w/ the ‘comparison’ comments from loved ones. They really just don’t get it.

    Most of the comments I just ignore or laugh off but it used to really bother me. And depending on my ‘mood swings’ now-a-days… it may still bother me.

    But I’ve learned it takes less of my ‘limited energy’ to blow it off than react to it. Even if I really just want to go on a rant! lol

  • Jess
    5 years ago

    I’ve had several people say “well it could be worse, you don’t have a more serious condition like cancer!” Is this supposed to make you feel better? I just agree and say “Yeah, it could be worse” . This makes me feel bad about JUST having MS. I don’t even complain anymore, unless I’m talking to others with MS who understand.

  • Ashley Ringstaff moderator author
    5 years ago

    I’ve gotten the cancer comment plenty of times before… but what people don’t realize is that there is more knowledge about cancer in the public eye, more understanding… and the doctors can tell them what to ‘expect’, etc.

    Do we have ANY of that w/ MS? No… Our neuros can’t give us an insight on what the future holds… they can guess, we all can guess, but there is no correct prediction.

  • Mgroz
    5 years ago

    I don’t give my diagnosis unless I have to. Family knows but as I would like them to be the soft spot where I can land without trying to compare themselves to me, I try not to respond to questions or statements that will frustrate or stress me. Close friends are also the same way for me and luckily my close ones understand that my issues I deal with are something they will never understand or “know how you feel” unless they get the MS diagnosis. I also tend to not say “I have MS” to just anyone because I walk with a cane and a brace for drop foot and they realize I have “something” but don’t ask what. For the persistent ones, I say I have a chronic debilitating nerve disorder which usually gets no reply. And if I say MS does that make it any clearer what that is about or just having heard of MS? That last reply may sound a bit stand offish but that is rather my point.

  • Ashley Ringstaff moderator author
    5 years ago

    It’s really hard to say let people know you have MS, when out in public. I’ve done that before, and they are like… “Oh, isn’t that the disease that affects your muscles?” referring to MG (Myasthenia gravis)…

    I feel like sometimes I need a sign to hold up… w/ a hand, that reads, “don’t ask” lol

  • Chrisite
    5 years ago

    Let’s get one thing straight here. These people are in no way showing “compassion.” They do not intend to do so. They care nothing for us except to show us that we are “weak” or “faking it” or it’s “not that bad” AND that they themselves have it much worse and we are only making their lives even harder with our tiresome illness, and that they are strong and could handle it much better than us. Well, I have one fervent wish for each and every one of these miscreants, and it helps me cope whenever someone makes one of these cruel, deliberate, nasty, selfish, stupid, rude, ignorant comments. I look at them and hope they get pancreatic cancer and die a horrible death. Pancreatic cancer is a very rapidly progressing form of cancer, but probably the most horrible one of all in terms of suffering before one passes on. That is why I’m specific in my wish for these selfish nasty jerks. I do not feel one scintilla of guilt over this, nor am I afraid of “karma” – after all, everybody is going to die; I’m going to die, you’re going to die, they’re going to die. Why not now, and why not horribly? Big deal. They richly deserve it. And if karma does come for me, well, bring it on. Karma can’t do one more thing to me worse than I’m already suffering, and if I die, hey, so much the better. I will finally be free of this disgusting undeserved disease that has totally destroyed my life. So take that, you attention w^@%&s who can’t even acknowledge someone’s pain and misfortune. You think you know what my suffering is? You think yours is worse? Fine. I will leave you my MS as your inheritance. I hope you enjoy it to the very fullest.

  • Ashley Ringstaff moderator author
    5 years ago

    “You think you know what my suffering is? You think yours is worse? Fine. I will leave you my MS as your inheritance. I hope you enjoy it to the very fullest.”

    That really got to me. I feel the exact way you do at times. Thought I don’t wish ill-will on to people, I do wish at times that I can slap someone, blame it on spasticity, and not get in trouble for it….

  • Danielle Stone
    5 years ago

    I love your blogs Ashley. Well I like all the blogs but this is such a good one. It’s very easy to be sucked in to healthy people trying to convince me that my suffering is the same as anyone’s. As we all know, it isn’t. But I have found myself thinking wow, everyone suffers the same way we do? Oh NOOOO they do not. I’ve had both my parents tell me they have the same word fishing problems and cognitive stuff happen to them, they are in their 60’s though. I am 42.

    I recently had my hair stylist tell me she has the same pain but hers is worse in her hip. She said hers goes away when she sits down so she doesn’t have it looked at. Anything I said she tried to “one up” me as if its the same as hers or anyone else. WE know it isn’t.

    On the other hand I have a very understanding supervisor and co-worker. In fact I had to call in sick today since I had a new symptom with my left arm occur yesterday, the weakness and pain I have in my whole right side showed up in my left arm yesterday. I slept until 3pm today. Still have the weakness but I feel rested. My supervisor even told me not to worry about missing more days off than I have available since we have disability I can file through work.

    Thanks for this blog! Danielle

  • Ashley Ringstaff moderator author
    5 years ago

    I’m glad that your co-workers have such a great understanding and don’t make it difficult for you when you need time to deal with stupid MS stuff.

    I’m glad you enjoy my blogs 🙂

    I think all those people who like to ‘one-up’ should all hang out together and try and one-up each other rather than those who actually suffer from something that you can’t compare to, even if you tried your hardest.

  • CatMom
    5 years ago

    Yep, you hit the nail on the head!

    One thing you missed. Many times I can’t find the correct word when I’m in the middle of a sentence. Yes, I realize this happens to a lot of people as they get older. But I can’t find alternative words, either.

    I wish people would quit telling me, “See, it happens to me, too.”

  • Ashley Ringstaff moderator author
    5 years ago

    Ah… I wrote a blog on that a while back… called cog-fog… https://multiplesclerosis.net/living-with-ms/cog-fog/

  • ThisBSMS
    5 years ago

    Yes, people don’t get it. To ‘get it’ you have to get it. 🙂 When people complain about being tired, I think they are just completely unaware of what the true meaning of being tired is. Before MS I had no idea that there are different levels of ‘tired’. I now get ‘regular’ tired (which is a good tired, like pre-MS tired) and MS tired (a scale from low MS tired to unbearable MS tired. When healthy people complain about how hard it is to go to work or not get much sleep because of their young children, etc. they have no idea how bad it can really get in terms of ‘tired’. I hear it and I laugh at it inside. Not to say being a working mother is easy, but if you have days and weeks where your biggest accomplishment is to take a shower that knocks you out for a couple of days because you got so tired from it, or how getting enough sleep is out of some fantasy world, I don’t want to hear about being tired if you don’t have MS!

  • Ashley Ringstaff moderator author
    5 years ago

    Completely agree.
    Being Tired… and MS Fatigue… they don’t have the same definition.

    I wish I could just be ‘tired’ more often, rather than having this stupid MS fatigue. If I have to take medicine every morning to function and not sleep all day… that’s not ‘normal’ tiredness… lol

  • dwg
    5 years ago

    Your right, people don’t get it. I try to hide my symptoms the best I can but, when your unable to carry a conversation or walk because of pain or numbness or unable to lift your arms, it’s impossible. When asked what’s wrong I say “I just have some discomfort.” I’ve distanced myself too, pushed my wife of 20 years away because of my pride, didn’t want her to deal with my discomfort, now we’re divorced. I’ve never made a comment on this site before but, your post is my frustration too so, I don’t complain to those who don’t know. Thank you for your post. Best wishes

  • Ashley Ringstaff moderator author
    5 years ago

    I’m sorry to hear about your divorce.
    I can relate to you on the ‘pushing away’ thing.
    When I was diagnosed, I was 22… my husband 24, and I tried to push him away, not so much out of pride or anger, but because I didn’t want him to have live with MS too. I’m glad he is stubborn and stuck around though.

    Some people (friends, spouses, family) really don’t have the strength to ‘live’ with MS… It’s not like they are going through what we do, but it still affects them in some form.

    Keep your head up & keep fighting. Know that you ARE NOT alone in how you feel…

    xoxo

  • Lowdramamama
    5 years ago

    DWG – thanks so much for addressing the “pride” issue. Because I never want to seem pitiful, or illicit sympathy – I have ended up not following up on friendships because of my pitiful PRIDE. I have missed NUMEROUS family events & functions due to the “P” issue… I keep thinking, “When will I ever get over MYSELF?”
    I grew up in a family where you NEVER mentioned money OR illness. So I have this “mantra” engraved in my brain (and maybe even on my “innumerable” lesions!) that has only succeeded in keeping me from living life!
    And I thank God (literally) for the husband He gave me… who puts up with me despite myself! His favorite saying to me is “IT IS WHAT IT IS”.
    Thank you again for your post. What you wrote resonates with SO MANY! 🙂

  • 5 years ago

    couldn’t have said this better myself. i often think that, were someone to ask, and REALLY want to know, how i’m feeling, my first stumbling block is that i don’t think i could explain. spasticity feels sorta like..trying to walk in ski boots. but not really. and i hear friends come out of their hot yoga class whining about how hard it was. i’d just about kill to be able to take a yoga class. you don’t miss your water ’til your well runs dry.

  • Ashley Ringstaff moderator author
    5 years ago

    “you don’t miss your water ’til your well runs dry.”

    OMG! I love that saying… I’ve never heard it before, or if I have, I forgot…

    trying to walk in ski-boots is a good example… or flippers… I saw this video on YouTube from one of the National MS Societies Chapters… They had a “Try on MS” thing at the local mall… http://youtu.be/9vIBFDpj4wk

  • Jake
    5 years ago

    Excellent article! I thought perhaps I am the person going through this issue. Whenever I bring up a symptom that I’m going through to one of my relatives, it never fails that she has been “through the same thing” – i.e. my MS issues are suffered by everybody so don’t think you’re special. 🙁

  • Ashley Ringstaff moderator author
    5 years ago

    If only it was that simple… where our symptoms WERE relatable… maybe we wouldn’t have such a hard time EXPLAINING them out, or why we are the way we are… UGH

  • oSandi
    5 years ago

    I don’t usually disclose much to others because I know they cannot fully understand, but I find I am distancing myself from people because of it. People would probably classify me as ‘stand off-ish’ and I am good with that. Another good post Ashley – thank you.

  • Ashley Ringstaff moderator author
    5 years ago

    Thanks – I’m glad you enjoyed it.

    I’m a very outgoing person, if you couldn’t tell from my articles…
    But I used to be A LOT more outgoing pre-diagnosis.

    Now I’m a homebody… but I have my MS friends to help me not feel ‘isolated’ with my MS. My ‘old friends’ that I don’t really talk to anymore, don’t even phase me… and it doesn’t hurt to think about the loss of friendship, because i’ve made better ones. I can honestly tell you that I have made lifelong friendships from people I met at msworld.org, where I volunteer.

    xoxo

  • north-star
    5 years ago

    I remember my sister telling me what she (married, pre-child) would do to cope with my headstrong three year old. I finally snapped, said she had no idea what my particular brand of motherhood was like and to back off. Her kids were easy when she “joined the club” a few years later so I’ve never had “closure”, dang it, except my former three year old is an awesome, amazing adult (so there!)

    I don’t think you can know a 24/7/365-to-infinity-and-beyond experience if you aren’t there like we are. Not that it doesn’t irritate me when people try. i only once got in a fierce little discussion when a man, who was prepping to run a marathon, disagreed with my casual comment that I felt like I was running a marathon most of the time. “It’s nothing like training,” he said, expounding on the pain, the burn, the desperation. His contradiction in a smug tone made me turn on him, telling him I used to be a runner and I sure as hell knew what I was talking about. He disagreed again(!) and I gave up. Some people.

    My current dilemma is (it happens a couple of times a week) is when a good samaritan pulls a door toward them while I’m pushing it open. There I am, hanging on desperately, trying not to fall. Do I say thanks?

  • Ashley Ringstaff moderator author
    5 years ago

    UGH! I have NOTHING against people who enjoy physical exercise or running marathons… I was a HUGE athlete all throughout high school… (basketball, track (long-distance), softball, shot-put) I know ALL about training hard… but it is NOTHING compared to getting out of bed every morning being a ‘difficult task’. Or cleaning my house… or going to the grocery store.

    You can’t compare what it’s like mentally or physically…. the ‘nerve’ of some people… (pun intended)

    About your dilemma… that’s happened to me. They thought I was drunk… at 8am. I just looked down and said, “Stupid floor, stop doing that.” lol

  • Terri Lira
    5 years ago

    Also I have had cancer, I had breast cancer with a bi-lateral (double) mastectomy and had to deal with that alone too, also have diabetes..I just don’t get people. No matter how much you say they just don’t understand.

  • Ashley Ringstaff moderator author
    5 years ago

    Oh I know…
    One of my husband’s friends brought his wife to a softball tournament a year or two ago… when it was oh, 115 degrees outside.

    They had a pool at the park where the tournament was held, so I of course took advantage of that.

    She then started doing those over-exaggerated faces like she was in pain… She said she has spinal stenosis & has an intrathecal baclofen pump (ITB)…

    I said oh yeah, I know the pain of that… and she goes, NO YOU REALLY DON’T.

    Well, with a little smirk I said, well yeah I kinda do… considering I have spinal stenosis, degenerative disc disease, arthritis, sciatica and multiple sclerosis. I can ‘feel’ your pain. TRUST ME…

    She didn’t have much to say after that.

  • Terri Lira
    5 years ago

    Hi, I have the very same symptoms,and you are right. My husband, family does not understand. My husband thinks I am lazy, because I make myself get up and go and do for him no matter how I feel , when I hurt or I am tired I am being lazy. We have been married for 14 yrs I have had MS for 13. He has yet to go to the doctor with me or read anything about it..idk

  • Ashley Ringstaff moderator author
    5 years ago

    Ugh – I’m sorry girl. No offense to the men out there who read this, but I think what you just described is a ‘man thing’.

    My husband is highly educated in MS, and attends appointments with me, when he can, as well as attends conferences with me on MS and does recording, for the conference coverage we have at MSWorld.org, where I volunteer. (http://conferencecenter.msworld.org)

    Yet he is still huMAN, and says dumb things where I just want to pull his hair out…. just sayin’

  • Aubri328
    5 years ago

    So true, so true! During my MRI results “wait” I hoped for cancer. That at least has a cure rate, and can be removed. Not to mention people “get” cancer. People have that life and death towards cancer. You say you have MS and all the sudden you turn into someone that is “needy” whatever! The only thing I need is for people to get educated. Continued success to you!

  • Ashley Ringstaff moderator author
    5 years ago

    Dolores –
    I can totally understand where you’re coming from. I feel the exact same way… towards the people who are actually compassionate about it.

    This article was more for the people who do it to be rude, ignorant, etc. All things far away from compassion and understanding.

    Keep fighting! Love your positive attitude!

  • Ashley Ringstaff moderator author
    5 years ago

    Aubri – I feel like education is the KEY to help stop SOME of this ignorance we deal with.

    When I got MRI, I thought it would come back as a tumor, pinched nerve, something… not MS.. I had no idea what it was actually.

    Everyone wakes up everyday, not knowing what the future holds. People with MS are the same, just with an added uncertainty that can be described or given a comparison.

  • Dolores Ladonna Jempson
    5 years ago

    Progression. too have MS. Just diagnosed last year in June. I too have most of the symptoms referred to. But I do not feel angry at people who attempt to relate with my condition. It’s human nature to show compassion. When a person doesn’t know exactly how someone’s pain feels all they have is the ability to share what they go through. MS is not life threatening but it is life changing. I am very thankful I do not have cancer. I have a disease which allows me to receive my medication for free. Medication which slows the Progression. Research which has already resulted in my injections going from daily to 3 times per week. So I am very thankful for not having cancer. Anyone reading this blog without MS, thanks for trying to relate to our pain. It shows you care.

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