“You don’t look sick”

An invisible illness is not only difficult to deal with physically but it’s also mentally. An invisible illness is defined as not immediately visible. When you’re hurting and miserable the last thing you want to hear is “well, at least you look great, you don’t look sick”. Here is everything you need to know as a caregiver or a love one around someone with an invisible illness.

  • Just because you’re hurting doesn’t mean you can’t look fabulous.

When someone says “you don’t look sick, you look great so you have to be feeling well.“Seems a little harsh, right? Most, if not all of us with an invisible illness have heard that. It’s hard to hear that from loved ones, let alone doctors. Yes we are hurting and sometimes you can see it just by looking at us, but sometimes we dress nice and put on makeup to hide our illness. Just because we look good doesn’t mean we feel good. Here’s a picture of me in misery. I had a migraine, nausea, body pain, and I just plain felt horrible during a round of IVIG. The other picture of me was at a wedding I was hurting and in tremendous pain but I put on a brave face. Even though I look okay, my body was screaming. A lot of times we try to look like we are doing okay because we don’t want to be center of attention, and we don’t want you to see us struggle.

  • Most people with chronic illnesses downplay their situation. 

I have learned, unless the person has been there for you through every dark side of your illness and picked you up at your very worse they won’t understand. It’s hard to explain to someone how tough this life really is, therefore, it’s easier to just say “I’m okay”, or “I’m hanging in there”. It’s easier to downplay the situation than tell the person the horrible down falls this illness has brought you. If you are around someone with a chronic illness, offer to help them out by carrying their bag or even just ask if they are doing okay.

  • Handicap parking.

If a person is using a handicap parking space and they look okay, just remember if they look okay on the outside it doesn’t mean they are okay on the inside. I get told all the time that I hide my illness well, because I’m always positive and I try to keep a “good vibe” environment. At times it can come off as me not being ill, but I am. A first impression of someone who is chronically ill shouldn’t be the base of your opinion on them. Even though they are walking quite well on the outside their legs may be screaming on the inside. I have heard stories where a chronically ill person used their handicap parking spot. They were hurting tremendously and decided to use it for the first time. A person mocked and ridiculed them and told them they needed to save the spot for someone who needs it. Please don’t be judgemental and keep your opinions silent. Just because they look okay doesn’t mean they are.

An invisible illness is defined as not immediately visible. An invisible illness is not only difficult to deal with physically but it’s also mentally.  If you are around a person who has a chronic illness, just know we are going through an arduous time and we need all of the positive, good vibes, and love we can get. You never know what a person could be going through, even a smile could brighten their day. This world is harsh and judgemental, and we need to take charge, be more compassionate, and spread love.

194 thoughts on ““You don’t look sick”

  1. “If a person is using a handicap parking space and they look okay, just remember if they look okay on the outside it doesn’t mean they are okay on the inside.” ~ Here, here! Thanks for the great posts ~ You’re making a difference!!

      1. You’re very welcome! I have a handicap sticker because of my COPD, scoliosis, and heart issues that aren’t visible. I know that look you get in parking lots.

      1. I understand what it’s like living with chronic illnesses….it really helps me to be patient with others because I don’t know what they are dealing with.

  2. Hi Mackenzie. So nice to meet you. Thank you for liking “Hit! Disturbing! True Sceptic! Sun! From The Air! and Super Powers! As far as I known don’t have an invisible illness. So can’t imagine what you are going through. So can only Wish you well. Be Safe. #TheFoureyedPoet.

  3. Mackenzie, great read. And I hope and pray you can one day turn in your handicapped parking permit and say, “Well thank you, I don’t look sick because I’m NOT!” Peace to you!

  4. You really made me think after reading this. I work with disabled adults as an independent provider. Some of my clients have cerebral palsy and I almost always can’t find a handicapped spot. I get so mad because I can’t get close with my clients and I would see people pop out of their car in a spot I wish I had been at. They look perfectly fine while my clients can barely walk. I guess I shouldn’t judge just because it’s not obvious what their disability is. Thank you!

    1. I’m so glad you can relate! It’s perfectly normal to look at someone and think why are they parking there? I used to until I became sick and it really opened my eyes! Now I’m just trying to spread awareness! Thank you so much! 😊

  5. A great post, Mackenzie and so true! I just had a talk with a friend about how difficult it is with depression because people most of the time can’t see what’s going on in the inside. They look ok so they must be ok, right? Sadly there’s no outside symptom, no little warning light furiously blinking to tell your friends that you’re actually not ok at all. If it were as visible as a broken leg with a cast people would definitely treat it differently!
    Have a lovely Sunday! Sarah πŸ˜„

  6. Great post, I can totally relate. I suffer from R.S.D which is a chronic pain in my upper extremities. Many people don’t know that I’m disabled due to it, they have no idea what I go through.

      1. Would you mind if I wrote a poem based on what you had to say,. I won’t post it hear in the comment box but on my blog wit alink/ping back to this page. πŸ™‚

  7. Thanks for visiting my site, Mackenzie. Your blog is the first I’ve visited that shares openly about invisible illnesses. You’re a courageous person, and your posts are very informative, personal, and delightful. May God continue to give you joy and strength, and use you to encourage more and more people.

  8. Hi MacKenzie, I see you’ve been reading a few of my poems, and sadly you found out about my little dog Lily, and haha, I hope you liked my choice of music . I understand about chronic illness and diseases , my wife suffered severe MS for 30 years, and I was her carer. And I have a gorgeous niece in Philadelphia, who suffers from SMA, I’ll attach her blog, oh sorry hope that’s okay with you. She’s 31, and I hope to visit her next year. I live in Geelong, Australia. Cheers. Ivor

    1. You have a great page! I’m very sorry to hear about your dog, Lily! Wow you definetely do understand about chronic illnesses! I’m really sorry to hear about your love ones suffering! But being a carer is an amazing job that doesn’t get enough credit! I will have to check out her blog, it’s more than alright to post the link on my page! Safe travels when you visit and thank you for sharing your story!

      1. Thanks for your kind words Mackenzie, and now I’m following your site, maybe it’ll be good for me. I suffer from Occipital Neuralgia, for 2 years now, and live with a constant head and eye pain, some days are betterer, and others are worserer, and of course to the outside world i appear totally normal… . looking forward to your articles…. Cheers..

        1. Thank you so much! And thanks for following! I’m sorry to hear that! I completely understand, you look okay on the outside but suffer on the inside. I hope my blogs will be able to help you in some way!

  9. I know what you mean and I have chronic RA, plus I have heard this statement more times than I can remember. Hang in there the best you can, you already know that not all days are equal. Best wishes to you and a big hug.

  10. Your first point is so accurate – “just because you’re hurting doesn’t mean you can’t look fabulous.” Make-up and clothes can go a long way to help bolster self-esteem, esp. when dealing with chronic illness. Never judge a book by its cover. So many people think that to be truly sick you have to look it. A lot of times, many of us with autoimmune disorders take pride in our outer appearance as a form of therapy and to feel normal, but it doesn’t diminish the physical struggles we deal with on a daily basis. Great post, can’t wait to read more πŸ™‚

    1. Thank you for your feedback, yoire exactly right! Most take pride in our appearances, like for me I have to always have my nails done. It makes me feel “put together”. Thank you so much! 😊

  11. Hi Mackenzie! I found your blog because you liked one of my posts and I always try to check out my readers amazing blog’s! I couldn’t believe you have EDS and POTS too! You’re posts are amazing and really relatable! Thank you so much for sharing your story it’s so important to make invisible illness visible

      1. You’re welcome, and thank-you that’s so kind. I’ve been thinking of doing a post on EDS and life, then I found your blog and it seemed like you said everything I wanted to say!

  12. I have a friend who’s been diagnosed with similar conditions to you. I know how debilitating it can be. I hope that writing has been a positive thing for you (though it seems that it has been). Thank you so much for all your likes tonight. I really appreciate every one. <3

      1. Thanks Mackenzie, that’s very sweet of you. For different reasons perhaps, writing has been my outlet too, so in that respect I understand how important it can be. x

        1. You’re not intruding at all! I honestly never knew how therapeutic it would actually be, but it really is my outlet! I’m kind of quiet so it’s my way to talk about how I’m really feeling, it’s amazing how much it’s helped me!

  13. That’s true. However, even with the same illness every patient will present with somewhat different symptoms, as well as our pain tolerance thresholds vary a lot.
    I have a life long illness, type I diabetes. It is as if invisible, unless, one gets hypos frequently and experiences aftereffects for many hours and sometimes days, and there is also this feeling that I do not know what can happen as I go to sleep.
    Well, and last surgery left me with complications that last for quite a while. I would say it is so good not to have any illness.
    I don’t write that much about these things because I feel like it is trying to determine me. So, I write about everything else.
    When I read about people who suffer from all kinds of conditions, I feel not great. I had to review lots of clinical trial results and patient test results over 35 years or so, and it always made me feel bad. Knowing how much suffering there is. I think one needs to accept the condition and understand it, and hope that technology one day will offer a solution.

    1. I’m sorry to hear about your diabetes, I know what you mean you don’t want your illness to determine you so you write about other things. I write about my illnesses as a way to cope and spread awareness to others who don’t have illnesses and help the ones who do. Thank you for your feedback and I wish you peace and best wishes.

          1. Thank you for following my blog! I’ll be visiting you. I’ve been blogging for a few years, but the reader can be overwhelming. LOL! Or it can just seem that way to my Ole πŸ‘€πŸ‘“πŸ˜

  14. Hi there Mackenzie, dropping by to say that you are a strong woman. I also have my health issues that are also cronic. Not so harsh as yours. I did find quite rational your way of thinking as to how to approach a person with illnes, I’m a real bad patient, and when I have been in the hospital wich I have lost the times I’ve been in and out of the same hospital, when I feel really shitty the last thing I want to do is see anybody. Then when I recover a bit…..well all the nurses know me by now, and they start shaking thinking as to what crazy thing I’m going to do or say, but all in good humour. Stay Frosty.

    1. Thank you for saying I’m strong! I appreciate that! And I understand, I’m just trying to spread awareness. I think doing a random act of kindness for those who are suffering is a good thing! Thank you for your feedback!

  15. Great points! Thank you for sharing your wisdom. Sometimes I take a pre-illness picture to new doctors so that they can see that I do indeed look sick or different than I did. We have so many other things to tackle everyday, defending our reality shouldn’t have to be one of them. Hoping today has been kind to you!🌸

  16. Good evening fear and thanks for visiting my page recently and your several “likes.” You’re absolutely right . Appearances can be deceiving and we shouldn’t be so judgemental with our fellow human beings. There is a saying in Spanish that goes like this:
    “La procesion va por dentro.”
    It refers to the accumulstion of grievances and multiple facets of pain one has to endure silently and stoically during life, akin to a religious procession of yore. Moreover patients with chronic diseases should be encouraged to beautify themselves to lift their spirits. And lastly in our image-obsessed society “the way you look” usualluly , sadly determines how you are going to be treated. If you look lousy, they will feel more emboldened to abuse you. Please keep reading and rating my blogs, and put some commentaries.
    Un grosso baccione.
    Arrivederci!

    1. Thank you! I really appreciate your feedback! That’s very interesting you’re exactly right with that saying, thank you for your feedback! And I will definitely follow along with your blogs! Best wishes!!

  17. These are all good points! I had chronic illness with Systemic Scleroderma for two years. Then I was diagnosed with rectal cancer and had a very major surgery and the Scleroderma regressed and went into remission. But I have not forgotten what it is like to be in chronic pain, be unable to walk properly, really need a disabled parking spot, and feel like I’m dying from the inside out. so I know that everything you have said in this post it true.

      1. And best wishes to you. I am looking forward to seeing more posts from you to know how you are getting on. You may have chronic illness but youo have a great attitude!

  18. Just this weekend I was shopping for my mother of the bride dress with my daughter ( the bride) and someone had the audacity to comment that we didn’t look like we should be parking there. I seriously thought we were going to need bail money, when my daughter started screaming at them.

  19. Hi Mackenzie – I found you through Christy’s Weekly Roundup. GREAT reminders for all of us.

    I want to add that there are also MENTAL disabilities which are almost always invisible. On a therapist’s recommendation, the mother of a 20-something client battling a crippling anxiety disorder parked in a spot RIGHT by the door so that her daughter could quickly run inside to pick up her prescription (rather than picking it up for her, as she had been doing).

    The progress that might have been made was quickly undone when a passer-by hollered, “Lazy! What about the folks who really *need* that spot?!” just as she got to her mother’s car, breathing heavily but proud of the fact she actually braved the store and nothing terrible had happened.

    It was another month before she was willing to even *consider* trying it again.

    Still, since there are so many folks who actually ARE too lazy to park further away — who behave as if they think that if the handicapped slot is currently empty it is fair game — it’s easy to understand how that happens. People are trying to help, unaware of the “invisible” possibilities.

    So I want to take the opportunity to remind the “currently abled” NEVER to park in a handicapped spot – for ANY reason other than a bona fide “handicap” — **especially** if someone in your household is the reason for a handicapped sticker or tag on your car.

    If they are not CURRENTLY with you, spend the few more minutes it takes to walk a few more steps. I promise you it is sooooo much easier for you than someone who truly needs the spot. These spots need to *remain* open for easy access when needed.

    Ditto access ramps, btw – don’t encroach on them just because the space in front *looks* like an easy place to park and you believe you’ve left enough room for a chair to maneuver. You’d be surprised how often you turn out to be wrong!
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
    ADD/EFD Coach Training Field founder; ADD Coaching co-founder
    “It takes a village to educate a world!”

    1. Hi Madelyn! I’m so glad you found my page! You are absolutely right about the handicap parking spot! Thank you for adding that! It’s very disappointing that people call invisible illness patients lazy but it also disappointing that actual lazy people take advantage of the whole not looking sick but they aren’t sick so they could use the closer parking spot. Everyone could use the reminder that we need to raise awareness that not all disabilities are visible. Thank you for your feedback! You’re right, it takes a village to educate!!!

  20. Such courage to speak out and bring attention to this. I had a close friend going through treatment, who received these comments, who made it a goal to dress how she wanted to feel that day! Your positivity is inspiring!

  21. This happened all my life , people around me always telling me how fortunate i am. And It did hurt all the time they couldnt see my inner bleeding. The wounds which are draining my inner joy all the time. They still wanted me to be content with what i have. But its not about have or have not rather have and wounded. Its like giving a glass of vine to a sick person on hospital bed and tell y u r not happy.

  22. A truly damaging aspect of the ‘you don’t look sick’ stigma is that it often becomes becomes ‘you’re choosing to be sick’ which makes it easier to deny health care and community services.

    People with mental illnesses are especially affected by this.

    Thanks for the post.

  23. This is all very true! I give you a lot of credit. My mom had cancer and was the same way. She always hid her illness very well and didn’t lead on she was in a lot of pain, so people didn’t really understand all she went through. Although she did pass away, she was a great example of being positive with a very tough illness.

  24. Welcome to my world! Growing up, only my mum knew of my invisible illness because she witnessed it first hand. It was harder proving it to the rest of the family and even doctors (let alone kids and teachers at school, and in later years, bosses and peers). It go to the point where I used to question myself, and even I know what I went through. People accused me of being fat, lazy, and that I looked healthy, it didn’t matter that because of different conditions in me, I went from days where I was feeling healthy and on top of the world to feeling Iike I was dying. At both extreme ends, I looked exactly the same outside, so for the most part, I did play down my illness because it was easier just to say I’m fine then let anyone know I was suffering, but it also greatly affected my social life. When I was at my worst, I didn’t want to be seen period, so stayed hidden from the world at home and only went out when I’m feeling healthy enough to, so many still either treat me like I’m a hermit, or see me as a lazy person. The fact that I’ve survived now to 50 is a miracle as the doctors kept giving me “death dates” for the first 12 years of my life, and gave up by the time I hit my teens (she won’t live to see 6 months, she won’t live to see 2 years.. that kind of thing). I suffer with bi-lateral lymphoedema which makes my legs look elephant shaped, but people just see me as a fat person with fat legs. I have IBS which means I eat the wrong food and I won’t go into the amount of suffering I deal with, and the wrong food can easily be a fruit like a tomato or a vegetable like an onion (and even then, some days my body accepts them, other days, they don’t, it’s ALWAYS trial and error). I’m also a textbook case for PCOS but because of my body shape, doctors couldn’t confirm it, and don’t get me started on my periods aggravating my IBS once a month! I think I was the happiest person in the world when I went through menopause. But I digress. I just wanted to say, I hear you!

    1. I’m so sorry to hear you’ve been through all of that. I completely know what you mean, it’s easier to down play and say I’m ok than explain everything you’ve gone through. Thank you for sharing your story, and thank you for reading! Best wishes!!!

    2. Oh wow! I know exactly what you mean! First, of all, I had to have IVIG treatments in the past so I know how that makes you feel. Also, I have felt the same way about using handicapped parking. It took me a long time to ever get that first handicapped sticker because I was too conscious about what people thought and how they would look at me thinking I didn’t need it even though I do. I have been in so much pain before walking around in the store or standing in line at the register and people around me would be so oblivious that they didn’t even know. And yeah, you do downplay how you feel because you get tired of trying to explain to them your situation so you just say “I’m okay.” I have done that so many times.

  25. Can so relate to the “But you look so great!” Haha…yeah you haven’t seen me when I can’t manage to get myself cleaned up for the day. Sometimes though, I see the sickness on my own face and the pain in my eyes, when the pain is up, and wonder how don’t they see it? How? But I digress. It’s difficult for those who have never experienced it to understand. They try, God bless em, they do. Thanks for following my blog, it’ll be interesting to follow you too, having something clearly in common.

    1. You’re exactly right! I’m the same way!! Like I see physically that I look sick but then people think because you look okay you are. Thank you for following as well!!! Best wishes!

  26. Let yourself weep and rail against the unfairness of life sometimes. It’s good to let off steam and be kind to yourself. I admire your fortitude so much, I don’t think I could be as brave as you are. I’ve been there and I sort of know where you’re coming from but we all react differently. Keep smiling as you are in that lovely picture.

  27. In South Africa, only people in wheelchairs and a valid permit are allowed in handicap parkings. Permit but no wheelchair? Park elsewhere.

    1. Well where I live you don’t need a wheel chair to have a handicap parking space, but they give you one if you prove it’s medically necessary. And I can’t walk far at all based on the 8 chronic illnesses I have. You can’t judge a book by its covering.

      1. I had a similar problem, was severely mobility restricted for 22 years, even in a wheelchair, yet I wasn’t even ever given a permit. They really are too strict on disabled people but too easy on transgressors.

  28. This is the truth that everyone needs to be reminded of. We need to show more care and love for people, and not always be so easy to form our own conclusions. Brilliant post!! πŸ™‚

  29. I appreciate your thoughts about not looking “ill enough.” It is truly tough to not only feel sick, but then to be told by friends and strangers that we don’t look ill enough to warrant care or accommodation. In the case of a family member, he said he didn’t want to hear about my illness anymore (he grew tired), but then in another family member, he said, “Why don’t you tell me when you’re not feeling well?” There are so many reasons why a person with an Invisible Illness decides to withhold the full story of what is happening on any particular day. We have simply seen it all, the emotional and relational toll on top of the physical one is often overwhelming and exhausting.

    The other day, I was talking about this with a friend who has an autoimmune disease. Both of us wondered what would become of us if: 1) our conditions are finally recognized by the ADA as deserving of protections and accommodations, 2) we needed to actually use them.

    What will it be like that day, when it does hit, where I’ll be mocked for using a handicap space, even with the appropriate paperwork and registration submitted and accepted?

    1. Thank you so much for sharing your story. I’m so sorry you have to go through that. I know exactly what you mean. I just recently heard from a family member that I need to push a little harder and asked if I’ll ever get better. It’s hard to hear that but some people will never get it. But it’s up to us to spread awareness. And unfortunately having a handicap space you hear the worst, that we are faking it, and that we need to save a space for real illnesses. Best wishes to you!

  30. Amen! I hear that I look great all the time, but I have always had great skin (darn) and yes makeup is a must. But man oh man I’d rather be at home in bed. I’m in pain. Thanks for being positive 😁

  31. Oh I can relate to this I was born with a birth defects which is chronic and I’m in pain all the time if you read my about page you will get the adjust of it I don’t look like I need a handicap placard because like you I still wear make up do my hair want to look good but have a hard time walking so pulling into handicap and people see my face and they yell at me you don’t look handicap it’s a horrible feeling.

    1. Wow, I’m so sorry you have to go through that. I know what you mean, it’s so frustrating when people judge so quickly. I hope you receive some peace. Best wishes for you, you’re not alone in this!😊

      1. Thank you , I like what you said your illness does not Devine you I keep telling myself that too . And I just take it one day at a time and that’s okay . Some days are better then others . But I am older then you so it is what it is I know how hard it must be to feel this way at your age it’s not easy but stay strong and do what is right for you.

  32. Really good blog thanks πŸ™‚ this years not been a great year and doctors still aren’t 100% sure whats going on. I’ve found you can push yourself through the day and look fine on the outside but then people don’t see you when you get home and are too exhausted to do anything x

    1. Thank you so much! And you’re exactly right, unfortunately people don’t see you struggle at home. I hope things get a little easier for you. Best wishes! 😊

  33. I totally understand. I had back surgery at 19 was never the same. Got diagnosed with fibromyalgia at 23 anf in my 40s they said I didnt have it just had arthritis and chronic back pain. The more I move the better I feel.

  34. This is probably one of the hardest things to do deal with in having an invisible illness – the judgment from people around us. Thank you for this post, it’s very educational and I can definitely relate.

  35. We make so many judgements based on a quick look. One of my friends quipped that when other women asked her for her ‘secret’ for staying slim, she felt like responding, “it’s really helpful to have a digestive disorder.”

    So glad you have a resilient spirit.

  36. I never get a “you look fine,” it’s always more of a “you look tired,” which is also really frustrating because on my best days, when I think I feel/look great I’m still going to look exhausted. I usually just say “yeah, I am” because that’s so much easier than explaining that my life is constantly being tired and today is actually a good day. I’ve also thought about using handicap parking on my not-so-easy days, but the dirty looks I anticipate don’t seem so worth it, yet. Thanks for sharing πŸ™‚

  37. “Hanging in there” is my go-to answer when I’m not feeling great but don’t want to go into details. I didn’t know it was so popular! πŸ˜‰

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