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Sometimes Not Looking Sick is Frustrating

Sometimes Not Looking Sick is Frustrating

Lately I have spent a lot of my time working on social media to help raise awareness of Multiple Sclerosis and while browsing Facebook, Twitter, Pinterest, and Instagram I kept seeing a lot of posts about “what people should know about MS” or “what I wish people understood about MS”. A really good topic if you ask me because, for the most part, the average individual has no idea what MS even is let alone how it can affect people “behind the scenes”. I read so many great posts and so I really tried to look at MS from a third person point of view in order to better understand how the world around me sees the disease that I live with every single day. The point of the majority of the posts that I looked at seemed to be to try to help people understand that there is an objective side to MS that you cannot see. If you recently broke your leg then everyone would be able to tell based on how you look with your cast and crutches (objective) but what they will never be able to see is your chronic pain or fatigue (subjective). Those things are not visible. So while all of this information was very important stuff that I also wish people understood, I felt like something was missing. So I began to think about what I personally wish people understood about my MS.

Translating my experience

So firstly, I have always tried to help people understand this same idea; the idea that there is a whole side to MS that they can’t see. “You cannot see how I cannot see,” I would tell people when describing my vision. But even then, I felt like I was not really translating my experience of what it is actually like to have optic neuritis, oscillopsia, see quick flashes of light while I lie in bed with my eyes shut at night, or even lose a bit of color in one eye. I felt like all I was really communicating was the simple fact that I could not do something that they could because “I have some weird brain disease”. I was telling them what a symptom actually was and how it worked; an objective fact, not a subjective experience.

No outward signs of my visual symptoms

Now, I am just using my vision as an example, obviously there is a huge laundry list of other symptoms that a lot of people with MS (myself included) experience every single day that people cannot see but my visual symptoms have always stood out to me. Through my eyes the world does not look like what it did 5 years ago. I can’t even look at things the same way anymore; trying to shift my eyes from one object to another creates ripples, things are always moving, and they won’t focus as quickly as they should. Yet, despite the fact that I often feel like the world around me is a chaotic and swirling mess of blurry colors, I can look at my eyes closely in the mirror and they look totally “normal”. They look like what anyone else’s eyes would look like which is just crazy to me. How can there be no outward signs of what I am experiencing when it feels so devastating? I can sit at a small coffee table with a friend and have a full out conversation in what (to them) seems like a totally peaceful environment even though to me? I may feel sick to my stomach because everything looks so crazy. I could spend hours trying to describe to them what it’s like, but in the end? They will never know exactly what it is like for me through my eyes because it, like so many other MS symptoms, is a subjective experience that “not being able to read line 3 on an eye chart” does not even begin to explain.

How does the world see me?

So what I am basically saying is the same old thing everyone with MS already knows; just because I look fine does not mean I feel fine. “If I felt half as good as I look then I would be in perfect health”, is what I often tell people. But that is the problem… I have to tell them that. I don’t have the option of telling every single person I walk by in society, a society that typically jumps to conclusions based on what they see. I am 27 years old but I have an aggressive case of a chronic autoimmune disease that’s attacking my central nervous system, a part of me that is hidden from the eyes of the world around me. I have, over time, needed a wheelchair, walker, arm crutches, a cane, and sometimes nothing at all as MS can dramatically change day to day. So with that in mind, if I were just standing in a crowd of people I would blend right in because I look fine but when I am actually walking around the store or an airport I am probably going to be using my cane because between my vision and my balance (two things you can’t actually see like a broken leg) I would not be able to walk without falling on my face if I wasn’t using it. So, though I am not self-conscious, I can’t help but wonder; what do people think when they see a 27-year-old walking past them with a cane? I know how I see the world but how does the world see me? I have grown to hate being told by people, “well, you are looking great”, as if that was at all an indication of how I am actually doing. Now don’t get me wrong, I am not saying that I wish I looked sick so that people would be able to tell that I am sick, I am just saying that sometimes not looking sick can be frustrating because the majority of what I have to battle every waking moment of my life is completely invisible.

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Comments

  • Carol
    1 year ago

    I thought I was doing so good and then all of a sudden, I can barely stand up. Don’t understand it. I’m back to using a cane, but that sometimes makes me scared too to be walking around by myself, which believe me is not very often. I’ve actually been too afraid to go out, but I want to try to be somewhat independent, but then something always goes wrong. There will be that problem, and then that problem, and then another problem, it is so worrisome sometimes, like when does it stop.

    I hope everyone will have a better 2018!

  • strongwoman72
    2 years ago

    Thank you! That is my experience. I look fine… I don’t have issues with movement, mine are mostly sensory. My right eye has perpetual (mild) optic neuritis. My feet have very impaired sensation but I can still usually walk like a healthy, sober person. I wish everyone would just let me stay in bed until about 4 hours after I take my provigil. (Seriously, I have considered setting an alarm for 3 am so I can pop my provigil and then actually be alert and oriented at 8 am instead of 8 pm.) And I’m so nervous about my cognitive abilities. My critical thinking skills are fine but keeping on task and organizing things are becoming extremely difficult. I still work and I am afraid my mistakes will start standing out… It seems like I have to constantly choose between working and the rest of my life (housework, socializing, cooking). I am sick of work being my whole entire life but I don’t think we can afford me not working. And I had and survived one of those godawful side effects (PML), so I am on some crazy, off-label meds. I don’t think medicare/medicaid would cover them.But yes, it is so frustrating. My loved ones try to get it and they do pretty well but somehow I can see their annoyance around that optic blur of mine. Oh, well… we are all here and alive, I guess. Thanks for letting me vent.

  • Matt Allen G author
    2 years ago

    So quick note on Provigil/Nuvigil – I actually used to do exactly what you are contemplating; I would set an alarm for 4:00am, take my pill, and then lie back down until it kicked in and forced me up. Problem is, after a while it REALLY started to mess with my stomach, never had that issue before, so now I don’t do that anymore because it seems like I have to eat SOMETHING with it to avoid the weird stomach issues.

  • MindyLyn64
    2 years ago

    I just scrolled down to read “comments” , thankyou everyone that took a moment to reply to the ” Sometimes Not Looking Sick is Frustrating”. I am very sorry for all who are going through this physical and emotional issues with MS , it stinks ! BUT , I am so thankful for each and everyone of you. Thankyou for digging in your heels to get through this , to vent on here ! to get a laugh or two when we get to read and so understand one another to some extent. I just spelled “read” ,,, “rid” ,, lol I had to go back and redo. That’s been another issue for me , my brain is speaking correct English but when I type or write a different word comes out , almost same meaning. Some things are scaring me right now with my neck , etc. , but you’ve given me a breathe of fresh air and almost shocked when I laughed outloud when I read about the “walking too fast with our canes” lol , thankyou! Stay encouraged , tomorrow or the next day ,,, the Sun will come out. One thing to remember too, there are people with NO physical diseases that are going through even more emotional stresses than we are. Stop and give a smile or a ” How are you? ” to someone , it helps.

  • clsuhre
    2 years ago

    Today’s survey question was “How often do you hear ‘But you don’t look sick!'” and I answered “never.” Am I in denial? I’m not sick! I have a neurological condition that limits my movements pretty obviously, but I’m not sick. Maybe the question really meant to ask, “How often do you hear, ‘But you don’t look disabled!'” I still rarely hear this, but when I do, it’s a good day because I’m not dragging as much as usual.

  • JanG6036
    2 years ago

    I hate to say this but 98% of the population could care less about how we really feel and want things to be all there way. I too have MS and fight with walking, standing, sitting, Sleeping ( RLS ), and washing myself.
    No one in this house ( Stepmother, Stepsister, Father ) really want to really know or to learn

    My Half-sister cut me off from her because I can’t keep up with her ( she has Fibro )
    My mothers side of the family could careless same with my dad’s side So I give up trying to teach people who don’t want to learn what this is about

  • Matt Allen G author
    2 years ago

    I personally won’t try to teach anyone who is not willing to learn because yeah, a lot of people out there just don’t care, “learning is hard”

  • susannepaseur
    2 years ago

    I would always say that I almost wish we were covered with purple dots so people would see them and say “Oh, she has MS.”

  • Matt Allen G author
    2 years ago

    Yeah, I remember years ago hearing someone say “I wish MS made me turn bright green, then people could see that something is wrong”

  • kicknMSback
    2 years ago

    Matt, I hope you don’t mind if I can remember how you said I will be saying it in the future. “If I felt half as good as I look then I would be in perfect health”, However, I am taking the aknowledge the symptoms and not dwell because hanging every thought on them is difficult enough. We unfortunately, will have more company soon enough, when I started in EMS might have heard of a co-worker taking care of someone with an invisible disease, now that I am retired from one I had several patients a month that had something that was messing with them. My silver lining was that I had an idea of what they were going through in their worst day, and was able to help them and my co-workers get the help they needed a little easier. Glad to have read your article.

  • Matt Allen G author
    2 years ago

    I think that is the key, to LIFE, EMPATHY, trying to understand and help others the best that we can

  • stumblingbumbling
    2 years ago

    I was diagnoised w/ ms about 12 years ago ( primary progressive ) and have read and listened to several items and comments similar to this. This mindset, (it would be great if everyone understood my plight,) begs me to ask why do I care if they don’t know or care what I (we) are enduring. I personally don’t need people I have never met feeling sorry for me. Try to put yourself in others shoes and realize we don’t see their problems either. How much did we know about ms before we were affected by it or how much do we know about other disease’s Be thankful for those who; know, understand ,love and help you!

  • Matt Allen G author
    2 years ago

    You’re right but my main point is that people should be able to understand that they do not understand something. *I* understand that I don’t understand, it’s not that hard and when I see someone else in public “doing something strange” I always tell myself that there must be something more to it that I can’t see, I mean, even when I see someone speed past everyone on the road and skip a red light I have to wonder, what if his kid is in there and he just cracked his head open and they are rushing to the hospital? It’s easy to say “that is just some jerk trying to speed around town” but we never REALLY know… but knowing that we don’t know is huge.

  • jn99
    2 years ago

    Well said. I look fine…but the fatigue is something others cannot comprehend. I look fine, but it felt like our recent heat wave was killing me. I look fine but my brain is addled for no apparent reason sometimes. I look fine and sometimes I can hike 4 miles no problem but I can’t stand up in a normal conversation for 10 minutes–I have to sit down right NOW!

    Thanks for your article.

  • Matt Allen G author
    2 years ago

    My doctor’s advice on this subject? Carry a picture of your MRI around; it doesn’t take a genius to know that a bunch of white spots are not normal.

  • dlynngillan
    2 years ago

    Yes, a lot of times people don’t get MS which is very frustrating. And, yes, I also sometimes feel very angry towards people when they complain endlessly about their minor health problems!! I had one friend (not sure if she’s a friend anymore) complain for almost 30 minutes about having to wear layers because she gets cold easily. Gee, I had to stop working because I couldn’t even handle working 16 hours a week. But did I go on about it? No. I just can’t understand how self-centered people are at times.

  • Matt Allen G author
    2 years ago

    While I understand how you feel and often feel the same, it is a good idea to take a deep breath and remember, people only know the pain and suffering they have felt, not everyone is empathetic towards the pain of others. This is not an excuse, it’s just me trying to find an explanation. To a baby, a papercut is THE WORST pain in the world but to us? A papercut is NOTHING but that does not change the fact that the baby with a tiny papercut feels like the world is ending. Just a perspective I have always tried to think about. But as people get older, they should be able to develop SOME empathy… SHOULD…

  • Yoshitail9
    2 years ago

    Ok..the MS Society needs to run a commercial that would look like this:

    Line up 12 of us who all look well.
    Then each person speaks one at a time.

    I have bladder problems and have to Cath.
    I have bowel problems and need to wear adult diapers.
    I have foot drop and often trip and fall.
    I have vision problems.
    I have painful pins and needles in my feet that makes walking difficult.
    Etc. Etc. Etc.

    Maybe this would let the public know what we go through; even though we “look so well”

  • bruscor
    1 year ago

    This idea could make a very powerful commercial. At the end, after the last person stated their symptom, the camera would pan out to all 12 who would then, in unison, say, “I have MS.” Or “We have MS.”

  • Matt Allen G author
    2 years ago

    Maybe one of us should just do that because the only medical awareness commercial I see on TV seem to be made by people just trying to sell something… We (people with MS) should create a video and spread it all over the internet, who knows

  • Carol
    2 years ago

    You can talk on and on. I don’t think there is anything that can be said to make people understand what our lives are really like

  • Matt Allen G author
    2 years ago

    No, there isn’t. You can’t TRULY understand it till it happens to you but people can try to be empathetic or AT LEAST understand that they don’t understand – “I really just can not imagine how it must feel”

  • pippin
    2 years ago

    This sums it up nicely. We look so good, but…..my only permanent handicap is my neurogenic bladder, I have to use a catheter every time. I look fine, of course – but I am constantly battling urinary tract infections. People don’t even want to hear about this kind of problem, it’s not something you can really bring up to co-workers, acquaintances, but it’s always there for me. Now, it’s been so long it’s my new normal, but it’s not normal, it is a problem – and I can’t even really talk about it. Except to you folks – thank you!

  • Matt Allen G author
    2 years ago

    It’s difficult… so many aspects of MS are still “taboo”, and the only way to break that taboo is to talk about it but, we all know that is not an easy thing to do…

  • Carol
    2 years ago

    Yes, having all the problems with balance, dizziness, brain fog, etc., but then the other problems like we also have to use catheters or Depends, we either have diarrhea or constipation, a lot of urinary tract infections, crying jags, but then there is always a few people that will say “you don’t look sick enough”!

  • chalknpens
    2 years ago

    I tried hard to ‘pass’ as normal for the final years of my career … teaching middle schoolers made me leery of having my students and their parents hearing “MS” and google searching all of the symptoms that I might one day experience. My symptoms are all invisible … it really is all in my head! vision issues, determining the direction of a sound, short term and working memory issues … clinical depression … the day a student asked me for a makeup quiz and I didn’t recognize him as my student, and couldn’t recall his name or learning profile … I knew it was time to throw in the towel. My immediate colleagues were aware and supportive, but once I retired I became even more invisible in that sphere. So very frustrating that teachers in my state are not eligible for SSDI (no SS income, for that matter) … and an abbreviated pension caused by an illness that qualifies others for SSDI … not even a widow’s (spousal) allowance … when my husband died his SSA died with him. But it’s all good – I look healthy. Yay.

  • Matt Allen G author
    2 years ago

    Don’t even get me started on SSI/SSDI… MY SSI story just ended in a bankruptcy… 27 years old… yay. But wow, even widows allowance? There really is so much more to MS than people can see as in more than just what’s going on in our bodies. What’s going on at the bank, with insurance, work, everything

  • kefranklin
    2 years ago

    It’s not all bad, though. There are some landscape photos displayed at my workplace that on some days look brilliantly 3D to me, but I finally figured out one day that they are not, in fact 3D. It’s actually pretty cool, but I realize now that on the days that those pictures have that 3D effect that almost makes me dizzy to look at them, that I need to slow down and pay a little more attention to taking care of myself. It’s a sure sign that I’m pushing myself a little too hard.

  • Matt Allen G author
    2 years ago

    Hmm, I can’t recall if I have experienced that (with photos). I know I get that effect with other things and yeah, I like it, it’s an interesting perspective, one of many that I would not get without MS and if I am stuck with this for life I am always going to try to find “silver linings” and make it work to my advantage. As a “photographer” I now want to find ways to incorporate that 😀

  • Dimitri
    2 years ago

    I know exactly what you mean.
    I experience similar things with my vision too. Actually I don’t think it’s my eyes, I think it’s my brain processing the information incorrectly. I have been in a situation where colours were off. ONE time I was outside after a snowfall and and I was marvelling at how beautiful everything was at the time. The sun was shinning on the snow in such a way that it looked like someone spilt diamonds on the sidewalk. It was surreal.

  • kefranklin
    2 years ago

    It’s so hard to really explain to people in general what my issues are. I recently started using a cane, because my physical therapist says it will help decrease my back pain and increase my endurance. Sometimes, on good days, I can actually walk pretty fast and people look a little confused when I seemingly sprint past those who are just walking at a normal pace, as if they don’t understand why I have a cane if I can walk that fast. Then there are times that I literally cannot even stand up straight, much less walk ten feet down the hallway. I truly never know from moment to moment what level of activity I can handle and it seems that some folks interpret that as using my MS as an excuse to pick and choose what I want to participate in. It can be really frustrating when I just can’t physically do some things at certain times, and can be almost fully active for unknown reasons at other times. Managing this condition means that I have to try to foresee every possible obstacle of every senario and how I might have to adjust to be able to make it through the situation. That in itself is exhausting.

  • Matt Allen G author
    2 years ago

    Man, I totally didn’t think to mention that; I’ll be at the store walking with a cane and STILL be stuck behind someone walking all slow so I speed up and walk around them. I wonder what people think to see some guy with a cane power walking past them???

  • Mascha
    2 years ago

    Great article. I totally agree,the invisible makes it really hard. I feel hidden from the world and not talking about it makes me feel ignored. Ugh 🙁

  • Carol
    2 years ago

    A lot of times, I do feel invisible. There are so many things that I cannot do anymore which isolates me even more and it can be lonely which increases our depression

  • Matt Allen G author
    2 years ago

    It’s like that commercial. “to most people, I look like most people”. As if explaining this disease was not hard enough

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