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To See or Not to See

Last night I had a dream and the main details of it I don’t totally remember but I do remember one scene very clearly. A friend in my dream was explaining to another person that I am chronically ill, and that person responded with “Clearly, look at how emaciated she is”.

Now what is interesting about this is that I am not emaciated at all in real life and also that somehow in my brain “emaciated” equaled chronically ill. And this dream got me thinking about what its like to have invisible illnesses vs. visible illnesses. I have MS, and that is for the most part an invisible illness. The hard part about this is that MS doesn’t necessarily show on the outside as many of you know. This is where our favorite phrase comes in, “But you don’t look sick”. To which I’d like to respond with yea, but you haven’t seen my insides. Its difficult to have an invisible illness because its hard for others to take your illness seriously when they can’t see it, or touch it. They have to go based on what you’re telling them, which goes against what they see. Seeing is believing for most of us. This is one of the most common gripes that we all have is that people just don’t understand us, they don’t get what our sickness is like, they think we’re faking, ect. Sometimes don’t you just wish that you could wear your MS in a way that people could see what it feels like to live with it?

Well I also have Ulcerative Colitis and a jpouch (google it). When I was really sick with colitis, you could see it. It looked like high dose steroids, hair loss, perpetual fatigue, and an over all run down appearance. Maybe I didn’t look sick to most people, but I definitely didn’t look like me, and I didn’t look healthy. During this time I would have given anything to have my UC be invisible too. We’re often stuck in this strange place between wanting others to be able to see our illness so they can understand, but being thankful that we can “hide” it and assimilate like everyone else.

Having lived at least a little on both sides of the coin, I truly can’t tell you which side is better. I don’t think one is superior to the other, I think they both have pros and cons. When I was sick with UC, people understood more because they could see it, but they also pitied me more. I was constantly being barraged with looks of sadness and sympathy, which honestly didn’t help much. But then again, when MS acts up, for me, its never been something other people can see. No one can see my optic neuritis and that I only have one eye to see out of. No one can see that I’m numb from the waist down. Sometimes I want so badly just for them to be able to see what it feels like when my legs go crazy from the cold air on my walk to work. But they can’t see it. And on many days, for that, I am grateful.

I suppose the question is, do we really want people to see our illnesses? Are we dying for them to see what its really like to be us, or grateful that we can hide what is going on inside our bodies? For me there is no right or wrong answer to this one, and frankly its ok if it changes on a day to day basis. I will say, honestly, most of the time I am happy that my illness does not show. Sometimes we think how nice it would be for others to see our struggles on the outside, but I have to tell you, when I was sick with UC I didn’t appreciate any of the pity looks that I got. Though they all came from a place of concern and caring, it didn’t make me feel any better that people knew that I was sick because they could see it. In fact it made it worse. The “How are you feeling” questions with that tone. Oh that tone. That tone that just says, “I am so sorry for you, you look awful, I wish i could help, you poor thing, I feel so bad for you”.

Perhaps its just me but I don’t want the pity because the more pity I get from the outside the easier it is for my to pity myself. And I can’t afford to do that. There are enough things in our lives that could bring us down physically, that we all have to stay strong mentally.

So I pose you the question, would you prefer it if people could actually see the symptoms of your MS?

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Comments

  • ArtistWithMS
    2 years ago

    Hmmm…. I think it depends on the support you receive from family and friends. I’ve run into 2 camps – those who have supportive families & friends, and those that have lost friends & have unsupportive families; I’m, unfortunately, in the 2nd camp (whoa, is that a run-on sentence or what?!)
    So, I’d have to say that I wish my family could see my disease in hopes they would understand – BUT they weren’t supportive prior to my diagnosis so I know it wouldn’t make a difference anyway. I guess I’d have to say that I would prefer the disease be visible on bad days… a little empathy goes far during these time. Thanks for the article!
    – I wish you peace
    Louise

  • tjodedixon
    3 years ago

    I was diagnosed a year ago by mri and symptoms by an internal med dr. I have been trying to see a neurologist in 3 different states now for over a year!! I am a travel surgical technologist and they consider me a “transient”. I have taken an extend assignment in middle Georgia and plan to reside here and start serious healthcare.I’m currently working at a level 1 trauma center and with no medication on board I’m really struggling to function professionally.I want to just scream at surgeons somedays”BACK OFF!! I HAVE MS!!” but u cant let anyone know.I also have degenerative bone disease and stenosis in my neck as well as copd. but I go to work and take care of others… and nobody knows.To see or not to see??

  • @masbrautigam
    3 years ago

    Great topic and love the way you write it. I hate the ” but you look so good”? I would rather be invisible I suppose.In one way it feels I am not sick from the outside. I just would like some empathy and awareness of MS
    Mascha

  • north-star
    6 years ago

    I’ve had MS since the 1970’s and it was invisible for 20+ years. Like Jackie I also have IBD (Crohn’s). It is invisible and I sometimes wish it wasn’t when I’m pleading with someone to let me use a restroom.

    Overall, I preferred it when I could keep MS a secret, even though I was sometimes scrambling and working harder to get things done. I could forget I had MS for months at a time. Not anymore.

    When I couldn’t hide MS any longer my life changed. My true friends took the “news” in stride and our relationships stayed essentially the same. Friends who were uncomfortable with chronic illness focused on what I couldn’t do any longer as they drifted away.

    People who don’t know me, now see the disease first:

    *The Patronizing Stranger: You are doing so well!
    *The Smile: So good to see pitiful you in my world. I don’t mind
    that you are here. Yay you!!
    *The Healers: Try my vitamins/supplements/herb doctor; did you
    hear about the new cure I saw on TV; my brother in law etc.
    *Mothers who sweep their kids aside ostentatiously; the kids then
    stare at the freak [me] who scared their mom.
    *The Outrageous Busybodies: “You should be using a walker!” (?!)
    *The Deviant: There are amputee fetishists out there. Totally gross.

    I’ve gotten used to the new way people see me but it took awhile. I cope with it by being an ambassador for MS, spreading information about the many ways MS affects people. I also say over and over, I can deal with it and do so much, don’t feel sorry for me.

    And I have to say that overall, most people are really wonderful, kind and helpful. I’m happy to be their good deed for the day when they open doors, etc. But I wish I could go back to the days when I was ordinary, boring, (nearly) normal face in the crowd.

  • leaky
    6 years ago

    If people would PAY ATTENTION, they would “see.”

  • Mandyrose
    6 years ago

    It doesn’t matter, in my opinion. Most of the well people do feel sorry for the unwell, but there isn’t much they can do. I limp and find it hard to stand very long. What can anyone do for me? Understand that I don’t lie when I can’t make a party or special occasion. Don’t get angry or huffy if I have to cancel at the last minute. I struggle EVERY day to keep some memory of my identity. I don’t need or want pity. Just understanding of something that’s hard to comprehend.

  • oSandi
    6 years ago

    I can relate to everything you wrote in this article. I have only begun to disclose my MS in the last 5 years of the 24+ years since dx. It was mainly to remind myself that there is a reason why I cannot hold a conversation in a noisy environment, why I lack depth control due to optic neuritis or why I struggle to shovel snow (even though I drive through it to get to the gym). So yes, I would prefer it if people could see my invisible symptoms 🙂

  • Steve Woodward
    6 years ago

    Interesting post!

    Case-in-point: over the course of this last weekend, I went to see relatives (my nephew’s birthday) and was feeling incredibly fatigued. When I mentioned this, my father and my brother both said, “You must be joking! You needn’t think you’re taking it easy” and so on.

    The following day, I went downstairs to make a drink for my wife and daughter and also made one for my dad. When I’d finally managed to get up the stairs with the tray (still in one piece and with not drop a spilt!), he complained that it had taken me ages.

    Hearing this, you could say that my dad is a d*ck. But I say, while that might (often) be true, he’s also just A DAD – as I’m one myself, I know that I can often say stupid and insensitive things.

    And my 65-year-old dad is also my go-to driver whenever I need to see my Neuro or get Steroids during a relapse, pushing me ’round the hospital in a wheelchair.

    For that reason, I’m mostly happy that my disability remains a ‘secret’. I know that I don’t really need to remind him.

    But I will say this: people SHOULD open doors for others, whether they have the outward signs of a disability or not. C’mon, people – it’s called politeness!

  • Lamarfreed
    6 years ago

    Having reached a “5” on the EDSS after 20 years with MS, primarily from fatigue, I still fit the category of “but you look so good”. I want people to see me as sick because I want them to know why I don’t move chairs, why I go for the supportive seat, why I use the handicapped parking space and it really does help me when they open doors for me. I want to say that I could, would do so much more without this foreign thing that stops me. If they respond with pity, that’s on them. Most people respond with respect and want to be helpful. But there are always those who respond with skepticism and judgement. I know it is hard for many PWMS to believe this, but for most of us they are inconsequential.

  • DawnH
    6 years ago

    I agree with you 100%. I do not want or expect pity from anyone but I would like people to understand that I am sick. I am exhausted all of the time and just the simple task of leaving the house for a couple of hours exhaust me and this is not who I used to be. I used to have the stamina of 2 people and I miss it more tan I can express.
    I have missed the Christmas party at work because I do not want to risk getting a cold or the flu right now because my flare is just now resolving. I stress out at physical therapy because people are coughing and sneezing and while I can wear a mask the germs and virus are everywhere.
    I am nervous to return to my high stress, fast paced job in the world of the Pediatric ICU. My days are 14 to 16 hrs long from the time I leave my house until I return home and honestly I can not figure out how that is going to work. While I work only 3 days a week I do my Betasteron injections every other day which the day after an injection I am really tired and sore. I know I need to eventually find a new job but how do I do that right now when I am so exhausted. I can not expect a new employer to not fire me if I have another flare anytime soon. I guessing am just trying to figure this all out.

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