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You Don’t Look Sick

You Don’t Look Sick

When MS is in the news, those actually living with the condition have a new spotlight on them, but if they “don’t look sick” they face additional questions from friends and family.

You Don't Look Sick Comic 1


You Don't Look Sick Comic 2


You Don't Look Sick Comic 3


You Don't Look Sick Comic 4


You Don't Look Sick Comic 5


You Don't Look Sick Comic 6


You Don't Look Sick Comic 7


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

  • Skydivertc
    2 weeks ago

    The comic strip was priceless.I’m 43, having used a cake for 10 years and hearing ” you don’t look sick” for the past 20 yrs, and I still get upset sometimes to the point where I will say something directly.. a good attitude and ignoring their looks and comments,Im still a work in progress…

  • Kitsy
    4 weeks ago

    I believe the reason I have lost friends and one of my sisters is because I don’t look sick. Not only do I look normal, I am also a very strong extrovert so when I see people I react in as a happy person. When I am smiling and say the fatigue is my worst symptom of MS, it is hard for others to understand. My sister Sally deliberately sped up her walking leaving me trailing behind because she thought I was faking being sick. After a couple of years, she decided she’d no longer reinforce my attention-getting behavior. She no longer speaks to me at all. This was heart-breaking because we had been very close the previous 50 years. Thankfully I have another sister and two brothers who believe I have MS. They understand that I can be happy to see them but be too tired to do everything I used to.
    Some of the friends I lost have similar reactions to my sister Sally. Others know someone else with MS and since my symptoms are not the same or as severe they don’t believe I have MS. They think I left my job because I am lazy despite years of working very hard and making major advances in my career. Again I am grateful that I have made new friends who accept me as I am today. I have become closer to older people in the neighborhood, those in a pool therapy class and art classes.
    It’s hard for me to accept my illness and it feels mean-spirited when others reject me. I’ve learned to let go of my former activities and replace them with new ones that are at my pace. I have also finally accepted the loss of people and find new ones – some who were right here in my neighborhood. I’ve also come to realize that I cannot keep pace with the much larger social circle I used to have, so it’s okay to have fewer people in my life.

  • jn99
    1 month ago

    LOVE the cartoon! Thank you.

  • Lily
    1 month ago

    Brooke,
    I like your cartoons. I read someone else post about wearing a sign that says “I’m sorry I just tripped and fell into you, I have MS.”
    Whenever someone says to me “you look good”, I will always say “thank you! You look good too.” There is always silence. I’m not sure if the person is processing what just happened, or truly understanding what just happened.
    Anytime someone compliments me, I will accept it.
    I stopped explaining soon after I was diagnosed.
    There seems to be a large percentage of the population that doesn’t understand. I would hope my friends and family would accept me no matter what.
    I mean, if you were to say “I’m feeling like I’m coming down with something”, whether it was a cold or you felt nauseous, they would understand. They would want you to stay home, and not get anywhere near them.
    So just say something like that, and see if they’re more understanding.

  • Brooke Pelczynski author
    1 month ago

    Thank you so much Lily! Working very hard on getting people to understand! haha

  • Lily
    1 month ago

    Hi Brooke,
    I found a great video titled “You see, I See: Helping Kids Learn About MS.”
    As you know, explaining to others how we feel, isn’t usually met with understanding. This video is exceptional, in the way it shows how we feel.
    The video shows his mom, who ‘looks great’, but when the boy puts on his special glasses, he can see how she really feels.
    It’s connected to MS LifeLines.I think you can find it on YouTube.

  • Shelby Comito moderator
    1 month ago

    Hi @Lily, I love this approach! Thanks so much for taking the time to share. We’re grateful to have your voice in our community. Best, Shelby, MultipleSclerosis.net Team Member

  • Lily
    1 month ago

    Hi Shelby,
    Were you able to see my reply to Brooke?

    The video “You See, I See: Helping Kids Learn About MS” is a great visual to share with people who don’t understand.

    I shared it with my brother, who is a doctor, who couldn’t understand, why I looked so good, but couldn’t “push myself” thru the day.

    We can share this video, but as I always say “I can explain it to you but I can’t understand it for you.” :-p

    It’s another way to explain it, and sometimes a visual can help.

  • Shelby Comito moderator
    1 month ago

    Hi @Lily! I just watched it 🙂 It’s not only so cute but really helps shed light onto daily life with MS in such a clear, easy to understand way. I agree – visuals can really help! Thanks so much for finding and sharing it with the community! – Shelby, MultipleSclerosis.net Team Member

  • Lily
    1 month ago

    Shelby, you’re welcome. I’m glad to hear that my comments are appreciated.
    I always wonder if my comments are read and by whom.
    I wish we could see the activity, like on FB private groups, we can see how many have “viewed” a posting.
    Thanks for being you!

  • Shelby Comito moderator
    1 month ago

    I hear you, @Lily! We appreciate your feedback and I’ll definitely make sure to pass along your comment to our design and tech team. Grateful to have your voice here! – Shelby, MultipleSclerosis.net Team Member

  • sucorone
    2 months ago

    When I’m struggling, I’m struggling. I don’t hide it but I don’t make a big deal about it. Fortunately, I am blessed with family & friends that have love, eyes & empathy. They do not judge, step in to help & we move forward together. I am so blessed because of them.

  • Karen K
    3 months ago

    Hi all. Everyone’s comments are all too familiar to me. Just fell and broke my humerus. So now can’t walk or use my arm. Not complaining. However family and friends don’t understand why it is hard for me to even leave my house. Getting in a car is nearly impossible and painful to boot. The arm should heal but MS symptoms progress nicely Lol. Rarely vent but it did feel good. Thanks for listening. Sending prayers and blessings to you all. Sleep well.

  • sandra5cents
    3 months ago

    I felt so hurt at a pre-Christmas gathering when I let the host know, I may not attend due to weakness and my new diagnosis. I pushed and went, so I could have a little opportunity to see my son and daughter in law. Imagine being told my the host as I arrived “well, from the sounds of it you sounded half dead, you look pretty good” I was hurt and stunned. Did he think I was faking? It was an insinuation of this to me.

  • Guitar-Grrrl
    3 months ago

    I’m coming up on 61 years young. I’m still on my feet, albeit with a cane. But something magical happens when I get on a ‍♀️ road bike… I can do it! Of course it takes days to recover, but just Monday one of my cycling partners said “well, you’re no different, we ALL go home and crash after a ride. I’ve known her for 15 years, and she “gets it” sometimes, but this was one of those instances where I really had to bite my tongue in order to not say anything untrue, unkind, or unnecessary.

    I love your cartoons!

  • Donna Steigleder moderator
    3 months ago

    @guitar-grrrl I think I would have been tempted to say something back in all seriousness like, “Really? I didn’t realize you were carrying an extra 200 lb. backpack the entire way too?” That’s what biking with MS is like. I would be happy to share more information with you about it.

  • Donna Steigleder moderator
    3 months ago

    Brooke’s post obviously hit home with each of you. Maybe a copy to your “favorite” insensitive commentator might be a way to open the door to how you feel about such comments? or an anonymous email maybe to make them think? Donna Steigleder Moderator

  • PegLeg
    3 months ago

    its maddening,,when your own mother accuses you of faking it, order to get attention,.. luckily my sisters step forward and set mom straight,,
    and friends, who you thought would always be there,, disappear,, that’s okay,, my dog loves me lol

  • Dimitri
    3 months ago

    I think Selma Blair’s attendance at the Oscars and her interview was a milestone for the MS community. I usually don’t follow celebrities, but after the Oscars I had friends contact me that they saw Selma Blair’s interview with Robin Roberts and that they had no idea what I go through with fatigue and speech issues.

    We need to be more vocal and visible.

  • KOrischak
    3 months ago

    When total strangers or acquaintances throw out the phrase “you don’t look sick” as they give you that look like they think I’m making it up, it bothers me. But when long time friends or family get angry when I don’t attend a party or gathering, it really upsets me. For the past 3-4 months I’ve had worsening symptoms….feel like someone’s hands are around my neck just squeezing, difficulty swallowing, trouble with talking, brain fog, so incredibly weak (collapsed in grocery store twice now), vision issues and severe headaches. My neurologist calls it “MS exasperation”. So, I’ve felt too bad to attend a party. Heck, I feel too bad to get out of PJs some days. Then a family member gets angry with me, stating “you don’t look sick”. To add frosting to the cake, we always exchange gifts at Christmas and for birthdays and this past Christmas I felt too bad to attend so I arranged for the gifts I bought and wrapped to be delivered early for the recipients. Then one family member says at a later birthday gathering, “Here’s your Christmas gift but I shouldn’t give it to you since you couldn’t be here Christmas Day.” All I could say was “Thank you for understanding and keep it if you want” and I walked away before I crammed that gift you know where. At 61, I’ve learned to handle things pretty well but this really bothers me. Having been run over and dragged by a car 48 years ago, I was left with a significant limp and had orthopedic challenges most my life and heard “you don’t look handicapped” more times than I can remember. Once I began to walk, they usually apologized, but this attitude from family really hurt. It helps knowing that others have been through the same thing.

  • aidaV
    3 months ago

    I hate when people say “you don’t look sick” Then I get pissed and I show them my port and then they are like what is that for, I’m like “are you f….. kidding me” I’ve been telling this whole time anout my autoimmune disease and you didn’t pay attention at all, I’m like whatever, bye Felicia hahhaah

  • Suzyq
    3 months ago

    The one I hate is when the Neurologist walks in and says, you’re looking good. HELLO, if you’re treating me for MS, shouldn’t your first question be, how are you feeling? I have fired several so called MS specialists over this.

  • SueK
    3 months ago

    Damn right I do not look sick! Proof I take care of myself. Proof I have self respect. Proof I am “me” and not my disease. Proof I am not looking for other’s pity. It is perfectly okay that I look okay. A guy struggling with hemorrhoids might look great. Should he bend over, drop his drawers and show his battle scars off to prove he is invisibly suffering? But if it makes you comfortable to wear your disease on your sleeve, do so. And if me meet, I will politely tell you – you sure look like hell!

  • CarolynAnn
    2 months ago

    Wow. Good for you.

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