You don

You don’t get it… till you GET IT.

You know how frustrating it is, when someone comes to you that does not have Multiple Sclerosis, or any other chronic illness, but tries to compare what he or she is going through to what we are going through. It’s annoying, at least for me. I know that I’ve touched base on this a few times in the past with, “You Can’t Compare”. However, I feel this is something that I need to touch base on again.

I’ve heard it all before

I wanted to write this article in more of a ‘scenario’ way, sort of like what someone says to you, and what I’m thinking in my head but try not to say out loud so that I’m not being ‘rude’.

  • “Oh! I get muscle cramps all the time too! They are such a pain.”
    • No, muscle cramps and dealing with spasticity caused by MS is NOT the same thing. There is no comparison. I wish it were just a muscle cramp that I had to deal with.
  • “I can’t sleep either, it’s so annoying. I am running off of so much coffee right now!”
    • Yes, not being able to sleep is very annoying. But the cause for the lack of sleep is most likely very different. I can’t go to sleep because of the pain that I’m in. And there is no way that coffee is going to help me the next day.
  • “Oh girl! I don’t know where my head is at half the time either! I can’t remember a darn thing!”
    • Yes, forgetting things is very annoying. But having to deal with cog-fog aka cognitive impairment is something completely different. This doesn’t just affect our memory, but many other things in our daily lives as well.
  • “Girl! I hate bras too! They are the most annoying things ever!”
    • True statement, they are pretty annoying. But when you wear one, it’s just that… it’s annoying. When I wear once it can bring on the MS Hug along with spasticity, where it feels like my insides are squeezing me in a bear hug.
  • “I don’t have any energy to do anything today either! I just want to be lazy!”
    • Having no energy for just one day out of so many, is not that bad in the grand scheme of things. But everyday having to deal with this chronic fatigue that is trying to keep you down when you don’t want to be ‘lazy’, you want to get out and do things. There is no comparison between being ‘tired’ and having ‘chronic fatigue’.
  • “My legs fall asleep all the time and it’s soo annoying to try and walk after that because your leg feels heavy.”
    • Yes, it is a horrible feeling for your legs to ‘fall asleep’, the numbness & tingling. But for those who do not suffer from a chronic illness like MS, the feeling comes back for most. I haven’t been able to feel the bottom of my feet and tops of my toes for I don’t remember how long. Also, that heavy feeling of the foot, it’s a constant for a lot of people with mobility issues due to MS. Not to mention the random spouts of numbing/tingling that comes on with no warning.
  • “Oh man, I hate it when my vision changes too!”
    • Yes, it is a common thing to happen to many people that are ‘healthy’, however, we usually experience drastic visual changes that can cause double vision, blind spots, dizziness & vertigo. I would love to only deal with ‘normal visual changes’.

Bottom line

These are just some of the recent things that have been said to me, when someone is trying to ‘relate’ to my MS symptoms. But the bottom line is, you don’t get it, till you get it. Meaning, you will not understand exactly what I’m going through unless you, yourself, getting diagnosed with MS as well. Which I’m hoping does not happen to the person making these comments either.

Some people just want to try to relate to us, and I can understand that, thank you. But there are others, those people that try and ‘one-up’ everyone else, that always have to have been there done that as well.

No one wants to deal with these symptoms, but we also don’t want what we’re going through to be categorized as something many others deal with on a daily basis that are ‘healthy’. Because there is no comparison… by making the comments like the ones above, you are making it out to seem like we are overreacting to our illness, when that is not the case. Most of us usually try and ‘hide’ what were going through from others, and just respond with “I’m fine”, when asked how we are doing.

xoxo

Ashley Ringstaff

(click on my name above for ways to reach me, etc.)

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 (32)
  • okachobi
    1 month ago

    Great post. I cannot relate to what it means to have MS, because after an initial MRI showing a lesion followed by others that didn’t, there was no definitive diagnosis. As far as I know, I don’t have it. But I can relate to people being dismissive of my symptoms. I don’t talk about them any more. They haven’t gone away, but I’ve been shamed by people close to me into keeping it to myself. Apparently if I were tougher I wouldn’t feel the burning in my shin or have my leg and hands go numb. If I were tougher I wouldn’t have double vision or have my hearing drop out on one side. If it weren’t for anxiety, I’d be able to walk much further without pain or stand for 10 minutes without my legs going numb. I wouldn’t have episodes of needle pains or weakness in my arm or leg. So I keep my mouth shut now. I’ve been told by those close to me that I wasted too much money on tests that were inconclusive because I’m “mentally ill”. All of this for wanting to know why I had these periodic attacks. I can’t imagine how people treat you if you have to deal with it all the time.

  • Ashley Ringstaff moderator author
    1 month ago

    I’m so sorry to hear about everything you’re dealing with and that no one around you wants to listen to your worries and take them seriously….
    Technically, it was all in my head when I went through what you are going through… like literally. I have lesions in my brain, so there is that aspect.

    Don’t let people’s negative commentary towards your real experiences keep you from seeking the answers you need.

    I didn’t push for answers initially… but I kept wondering what was wrong and thinking the worst until I finally got answers over a year later. There are people out there that it takes FOREVER for them to be diagnosed, because this disease isn’t a ‘one test check’ kind of thing that will give you a firm yes or no.

    Anyways, wishing you all the best.

    xoxo
    Ashley

  • Nicole.B
    6 months ago

    I completely understand. I’m so tired trying to explain that MS symptoms are different. I’ve just gotten to the point that I just stop talking. There’s no one that I can talk to that understands, so I find that I’m isolating myself.

  • Ashley Ringstaff moderator author
    6 months ago

    I’m sorry to hear that you have had to deal with this. Please don’t feel like you need to isolate yourself. I did this way back, and it won’t good.

    You have an entire online community who ‘get it’ on this site! So please don’t hesitate to reach out.

    Best,
    Ashley Ringstaff

  • 7 months ago

    What can I say? I’m glad I found this place! I relate to everything I read, and I thought I was alone,I thought it was all in my head. Thanks for sharing. MS is not easy, sometimes I feel like nobody understands, that’s why I keep it simple, every time I have a flare up. Sometimes I even say I’m doing better, when is not true at all to avoid all types of conversations. Sucks!

  • Ashley Ringstaff moderator author
    6 months ago

    I’m really glad you found us too! It’s always nice to hear that just writing out what I’m feeling has helped others.

    Best,
    Ashley Ringstaff

  • Jacksonlowerkeys
    10 months ago

    Friends often respond as if they understand when they will never understand unless they have walked in our shoes. Frankly, I think it is their way of ATTEMPTING to empathize with you. Accept they can never understand. Get over it. It would be scary if they could.

    Within our disease someone will describe a pain symptom I’ve never experienced. My response is active listening and acknowledgement, knowing I don’t have know that particular feeling.

    Best to you. That’s the best I can do.

  • Ashley Ringstaff moderator author
    10 months ago

    Jacksonlowerkeys,
    I totally understand that aspect of the situation, and see your POV. I was speaking in regards to the people that actively try to compare… and tell me they KNOW how it feels.
    Just gets on my nerves at times, depending on the person.

    Thanks!

  • katrina
    11 months ago

    its always nice to read comments and other points of view. I did learn something from someone else’s post. I used to get upset at this too. The comments like oh did you hurt your knee too. (I get alot of spasticity in the morning) I used to say no, its neurological and end it there. But the more noticable it became I just started telling people i have MS. I work in a hospital and people still can’t understand how I walk very differently from one time of day to another and sometimes think I’m getting better. i give them a simple explaination about MS and how my walking will get better and then worse again, because i know they just don’t get it and hopefully seeing me and letting myself be open to them educates them more. This will not work for every person and after a certain point I will avoid engaging these individuals about Ms talk, but if those that are open to learning more do, then I have done some good for our community.
    I grew up with a father who has MS. i knew alot about MS, but was elevated to another level when I got MS. So, I have been on both sides of MS. I know why my family acts a certain way because i was them and I then knew exactly how my Dad felt when we did certain things. It was very enlightening.
    When dealing with others complaining about fatigue, for example, I don’t try to compare myself or rarely. They could never understand, but I have to respect their feelings as well if I want them to respect mine. It also makes me feel a little more normal sometimes to let others complain about being tired. I will mention being exhausted at times but i don’t want people to avoid me because they feel bad complaining to me.

    One thing i learned from my non-social father is to look people in the eye and say hello to them first when in public and talk to them like nothing is wrong. People don’t want to be rude and stare or try to look at you without you seeing them but they do. Its so simple and surprisingly seems to put others at ease which in turn puts me more at ease. Then they are looking at me and not my legs.

  • Ashley Ringstaff moderator author
    11 months ago

    Thank you for you perspective! It’s for sure a different way to think about things. I tend to write articles on things when it’s very recent when dealing with the certain issue, or i’ve upset about something and need to get it off my chest.

    I do try to see the bigger picture once i’ve calmed down, but I haven’t heard it from someone it your specific situation before either. So thank you for sharing.

    xoxo
    Ashley Ringstaff

  • Laurie
    1 year ago

    I have had a number of people tell me the same kinds of things. It’s very frustrating, and it makes me feel dismissed, much the same way doctors dismissed my symptoms in the early days of my disease by saying I was stressed or I needed a psychiatrist because “MS doesn’t act like that.”
    Thank you for writing this article!

  • Ashley Ringstaff moderator author
    11 months ago

    Laurie,

    Glad you enjoyed. I’m sorry that you have to deal with it as well. It’s nice to know that we aren’t alone in our emotions.

    xoxo
    Ashley Ringstaff

  • allinjay
    1 year ago

    I’ve had RRMS for over 35 yrs and converted to SPMS over 6 yrs ago. I’ve been confined to my bedroom for almost 3 yrs now. I’m a 70 yr old male. I gotta respectively disagree with this message. I SO MISS all those questions by “well meaning” people. Me thinks you may disagree also when YOU are confined to your bedrooms. I was a very social individual and ALSO tried, at every opportunity, to befriend someone who was disabled. I did this BEFORE I had MS. My love and compassion for mankind has allowed me to accept my own condition and to understand somewhat why others ask these questions. Please try to chill and “enjoy” all these questions WHILE YOU STILL CAN.
    NAMASTE

  • katrina
    11 months ago

    namaste

  • Ashley Ringstaff moderator author
    1 year ago

    Thank you for reaching out with your opinion. I always love to hear about other peoples perspectives on subjects. I really do try to understand and listen to those who discuss things with me that mean well… I’m glad that they care enough.

    I get aggravated with the people that are being snarky/rude on purpose about it ,and I have a short temper as it is.

    Sorry to hear that you are bed ridden, thank you again for reaching out and being apart of the community.
    Best. Ashley R

  • giraffe516
    1 year ago

    Great article. I have mobility issues. Walk with 2 canes and I wear a bioness. I always get….did you have knee surgery? I explain the situation and then get….oh I know how you feel. (insert family member co worker friend here) had surgery. It’s just awful isn’t it. I want to respond…your person recovered. Can walk now…well I never will. But I don’t. Usually say. Sorry to hear that and disengage! Or when i say i am tired I hear oh take a nap. I could nap for 24 hours and wake up tired! I work 6 days a week care for four pets and a three story townhouse. A nap ain’t cutting it! Lol

  • Ashley Ringstaff moderator author
    1 year ago

    Oh I completely feel you! I think in regards to when people ‘compare’ their incident to an MS symptom, when that person is regarded as ‘healthy’… it irritates me. I know they aren’t trying to be rude… most of them at least… but the thing people don’t understand is that fact that we DO NOT KNOW what tomorrow holds for our illness/symptoms. It’s the fear of the unknown.

    Oh you saw me having a ‘normal’ day yesterday, but today i’m not able to get off the couch… welcome to my reality.
    Ugh, sorry… just a touchy subject for me.

    Anyways, glad you enjoyed the article. Wishing you all the best!
    xoxo Ashley Ringstaff

  • itasara
    1 year ago

    I understand what you’re saying though I don’t totally relate in my case. I think people who do not have MS or any other auto immune disease may not understand, but I think they try and may describe their own symptoms in that regard. I think this is more of an education moment to help others understand, but I actually try not to get into it too much. . I think there are many people that have far worse problems than mine and I can’t begin to understand what they’re going through. Does it matter if I have had numbness in my feet for 12 years? Someone else may have numbness for another reason but it still numbness nevertheless. I think there are many people that have far worse problems than mine and I can’t begin to understand what they’re going through. Maybe people who react do not understand or may have noone else to talk to about their own problems. If somebody says to me “but you look so good,” I really don’t mind. I try to look my best regardless of whether I have MS or not. It’s kind of a tribute to having MS and getting past it as much of it as possible. I am more concerned about looking and getting old right now than I am about having MS LOL! I worry It could get worse for me, but so far so good. One of my children was recently diagnosed with Crohn’s disease. I’ve never had to go through what he has been going through, undiagnosed for 15 years in his youth. This has caused major depression for him and nothing we do or say seems to help him. I’m sure if I were to mention my own bathroom problems he too would say I don’t understand what he’s going through.
    So the best we can do is listen and try to give him some advice and hope his treatments will help, but it is a disease, like MS, this has no definitie cure and differs from one person to another. By the way, I wear a bra most of the time and it never caused an MS hug. When I do get them and they’re not too often and they come randomly lasting a couple seconds But not too much longer most of the time.

  • Ashley Ringstaff moderator author
    1 year ago

    Thank you for reaching out. I am so sorry to hear about your son’s recent diagnosis. I do know that we all can’t relate to one another, and I do know that there are king people out there, who mean well w/ their comments. But there are some people I have encountered that were being rude on purpose and very snarky. That’s what I can’t stand.
    I try to stay calm and think over my words before responding to most, but it just depends on what al went on that day, and how much my ‘filter’ is working.

    Anyways, wishing you all the best! Thank you again for reading the article and being apart of the MultipleSclerosis.net community.

    There is actually a site that is apart of Health Union, LLC. for those w/ Chohn’s Disease as well, if you wanted to share w/ your son. https://crohnsdisease.com

  • hQpyf7
    1 year ago

    thanks Ashley for the article. we’ve all gone through this and it will happen again to us. i was at another support group, (non-ms), recently. this a few weeks after the in the top 10 of spams/cramp attacks. call it an MS flare if you want. haven’t been my old MS self since. anyways, at this other group i casually mentioned i had been having some really bothersome MS issues. after the meeting a gut comes up to me and proceeds to tell me MS was a thyroid problem and how he found a doctor (non-neuro) on the web discussing it and how that thyroid medicine concoction had helped him so much. you know he had to toss in this, “that is if you’re opened minded and willing…” or something to that effect. my ears went off then. i won’t even mention family.

    i just said thank-you and went on my way. i did look up on the net about it. just another quack, in my opinion. i haven’t been back to that particular meeting since.

    like you, we hear it all the time, and they just don’t get it at all. i gave up explaining anything about my MS to anyone for the most part. i let em talk and then move on. i mean think about it, how many doctors did most of us see that didn’t “get it”, thus no diagnosis?

    and now, its is almost taboo to use the word “pain”. like you and many other MS’ers, i have that also when trying to sleep & wake up & just in general. since the med community now steers clear of the word, “pain” now, wonder how MS people will now be treated?

    thanks again to your article and other posters regarding this.

  • Ashley Ringstaff moderator author
    1 year ago

    Glad you enjoyed. I’m sorry to hear that you went to a support group of all places, and had someone come at you in a negative way. Because yes, it was negative… and arrogant, in my opinion.

    People like the one you described, are the reason I wrote the blog, MS & Things You Should NOT Say”
    https://multiplesclerosis.net/living-with-ms/ms-things-people-should-not-say/

    It really irritates me when people try to down play what we have, or try and encourage us to ‘open our minds to other options’ … implying that we are close minded in the first place. it’s just rude and disrespectful.

    Anyways, thank you for reaching out. I’m glad you enjoyed the article. Wishing you all the best!
    Ashley Ringstaff

  • keishalyle
    1 year ago

    Wow, I really can relate to this article! I always feel bad because I don’t want people to think they can’t complain to me about their own issues just because they know that I’m dealing with a lot, too. But when they start directly comparing – that’s when I have to draw a line. The “I know what you mean” reaction always makes me cringe. You’re allowed to tell me that you’re tired! But you can’t – unless you also have a chronic illness – tell me that your feeling is the same as mine. Yours is a passing feeling; mine is just my normal.

    I’ve found that it happens most often when I’m sharing my worries. I’ll be in the middle of some serious CogFog and people will try to downplay it, saying they forget what they’re saying sometimes, too, and they also have days where they just feel “out of it.” I shouldn’t worry, they insist. It’s totally normal. No, actually, it’s not, and I know you mean well, but you’re telling me I’m wrong about my own body. And I’m not.

    I try to be patient and calm in explaining the difference to people because I don’t want to scare them away from being open with me, but I’ll admit it’s still extremely frustrating when I feel that I have to fight to “prove” that I’m not exaggerating.

  • Ashley Ringstaff moderator author
    1 year ago

    I completely agree with everything you said. I don’t want people to feel as if they cannot come to me to discuss things, vent, etc. But there is a line that shouldn’t be crossed when you are “healthy” and trying to compare your symptoms to those of someone with a chronic illness…

    I wrote another article a while back that I think you will enjoy as well, “Your Can’t Compare” https://multiplesclerosis.net/living-with-ms/cant-compare/

    Thank you for reaching out and reading the article. Wishing you all the best!

  • djg769
    1 year ago

    invisible disease yes. no one wants to believe you. its easier to believe your just lazy and complaining too much

  • Ashley Ringstaff moderator author
    1 year ago

    It’s the worst when people really try to play what you’re dealing with down, or make excuses about your behavior that are incorrect. At least we all have each other that can understand and vent to.

    Best, Ashley Ringstaff

  • LuvMyDog
    2 years ago

    Very good article Ashley, I know exactly what you mean. I used to be constantly bombarded with, “Oh c’mon, I have that too..or…everybody has days like that” NO! Everybody does NOT have days like a person suffering with MS does!! But like you said, nobody gets it, until they get it. I am an introvert, I enjoy my own company, along with my dog’s company, far more than I like being around people because most are so damn phony and like to say they “know” what shooting sharp pain in my eye feels like, or that ugly squeezing hug, or the muscle weakness or the horrible fatigue. So many, many symptoms that healthy people do not experience but have the nerve or just plain ignorance, to look you in the eye and say….Oh, I know how you feel ! When I go shopping and somebody says, out of habit…how are you today? I say, You really don’t want to know. It’s gotten to the point where it’s incredibly hard for me to be cordial to 98% of the people I meet.

  • Ashley Ringstaff moderator author
    2 years ago

    I totally understand on that! Some people have asked me why I have to be upset/rude in replies… but I don’t think they are understand….

    With so many people trying say they deal w/ the same issues as we do, with MS… it’s like they are discrediting what MS actually does. I wish it didn’t cause the symptoms it does, but we need to bring awareness that will lead to a cure.

  • Azjackie
    2 years ago

    This was a really great article. I understand some are trying to be helpful but it’s better to be silent when not understood. I would like to add heat and pain.

    I live in AZ granted it’s scolding hot. I am told at least it’s a dry heat. That doesn’t make any difference to MS. When I’m in the heat I literally feel on fire inside. This leads to dizziness and falls.

    Pain for me is constant mid thoracic spine. I feel like the scene from the movie ‘Preditor’ when the alien rips the spine and skull out.

  • Ashley Ringstaff moderator author
    2 years ago

    Ugh I know what you mean! I live in Central Texas, so I can totally relate to the heat issue. Although, I tend to not be AS bad w/ dry heat…. because the really high humidity just makes me feel sluggish… ? And it’s hard to breath… BLAH!

    We just need to move to Alaska.

  • Mascha
    2 years ago

    Great article:) I noticed you can also get a MS hug by even putting a bra on. I have had this too,but didn’t think my bra could cause this:( thanks x

  • Ashley Ringstaff moderator author
    2 years ago

    I don’t know that it ’causes’ it but it just seems to make everything worse. 🙁

  • Kelly McNamara moderator
    2 years ago

    Hi Mascha,

    Thanks for the comment and for being a part of our community!

    – Kelly, MultipleSclerosis.net Team Member

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