“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.

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Living life with autoimmune diseases is tough, but I'm tougher.

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

  1. 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!

    Liked by 2 people

    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!!!

      Liked by 1 person

    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.

      Liked by 2 people

  2. 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.

    Liked by 2 people

  3. Let yourself weep and rail against the unfairness of life sometimes. Itโ€™s good to let off steam and be kind to yourself. I admire your fortitude so much, I donโ€™t think I could be as brave as you are. Iโ€™ve been there and I sort of know where youโ€™re coming from but we all react differently. Keep smiling as you are in that lovely picture.

    Liked by 1 person

    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.

      Liked by 1 person

      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.


  4. 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?

    Liked by 2 people

    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!

      Liked by 2 people

  5. 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 ๐Ÿ˜

    Liked by 1 person

  6. Oh I can relate to this I was born with a birth defects which is chronic and Iโ€™m in pain all the time if you read my about page you will get the adjust of it I donโ€™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 donโ€™t look handicap itโ€™s a horrible feeling.

    Liked by 1 person

      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 thatโ€™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 itโ€™s not easy but stay strong and do what is right for you.

        Liked by 1 person

  7. Really good blog thanks ๐Ÿ™‚ 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

    Liked by 1 person

  8. 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.

    Liked by 1 person

  9. 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.

    Liked by 1 person

  10. 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.

    Liked by 1 person

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