What People Say About Living with Invisible Disabilities

 “We may not fully understand our loved one’s condition, but we can believe them.” Sherri Connell
 
“I get tired of being told ‘but you look fine’. Someone who has known me for 5 years just recently asked me how I am doing, I said same old same old, I guess not bad for a 65 year old body’s shoved into a 38 year old body. She laughed and said ‘oh! You’re not anywhere near that sick.” ~Patti

“I just want people to understand that even if we look ok we are still sick. I just had brain surgery and because they didn’t shave me bald people look at me like I’m nuts. My family wont accept the fact of my illness that I have had for almost 9 years. Well its here and its not going away so they need to get over it and learn to deal with. It’s not like I asked for it.” Kristine

“I have RRMS, since 1994.  I now have CFS and have gone from super-mom, PTA president, volunteer of the year, being super organized to barely being able to get out of bed in the morning on some days.  I feel like no one understands why I’m not able to do the same things anymore…because I Look Fine!  I can’t remember a lot of things now, can’t run on the treadmill, have to sit and rest 20 times a day…but I Look Fine!  I must just be lazy!  Thank You for your website and for making invisible diseases visible!!!” ~Lynn

“[People] think I am lazy because I ask for help with seemingly simple tasks. They think I am lazy when I stay in bed all day…when I complain I can see in their faces “but you LOOK healthy!” It’s so frustrating, even one of my closest friends has told me to my face that ‘if I REALLY wanted to, I could snap out of it and function normally…’ It hurts me to think that even my friends believe I’m ‘faking’ being sick. I don’t know how to get people to understand. I find that I am distancing myself from my friends because I know they are thinking that I am such a useless person. I don’t really want to but it seems that I am shutting the world out.” ~D

“My first wife, who died from lung cancer 8 years from initial diagnosis, never looked ill until the last few months of her life. People can have cancer without there being any outward signs. I should imagine there are many illnesses where the patient looks perfectly well.” ~D

“I have MS. I am 42 years old and have been ill for 12 years. It is such a pleasure to see this site. I’m still burning from what my in laws have done to me this year. This would have been the first time they’ve seen me since my MS has put me out of commission and disabled me. I would have expected them to believe me only because I say that I’m ill and that I should not have to prove anything, but the ‘but you don’t look sick, you don’t sound sick,’ etc thing came out of their mouths, while mine dropped to the floor in disbelief. If they only knew. They’re my family and are supposed to believe me because of that.” ~Kathy

I purchased [But You LOOK Good!] about 3 years ago. I couldn’t believe how much
I could relate to her words. It was if I had written it myself. I have suffered from chronic pain due to nerve damage within my spinal cord. I had neurosurgery in 1996 and have suffered pain when the symptoms began. The levels of pain fluctuate from moderate to sometimes debilitating where I am in bed in excruciating pain unable to function at all. I have suffered in silence because I have been deeply hurt by rejection because everyone including my family denies that a serious problem exists. The pain has been so hard to bear sometimes that I didn’t know if I could make it through the moment. But the rejection hurts more then the pain itself. ~E

“I can surely relate to the ‘but you don’t look sick’ syndrome. I am a 41 yr old female with two daughters… I had my first heart attack at the age of 34 and another mild one at 37, so have been fighting coronary artery disease for over 7 yrs and the past two yrs. have also trying to fight against peripheral artery disease. I have not worked full time since the beginning of the yr and sometimes I wish I had a dime for every time I have heard ‘but you don’t look sick’ comment. I rarely leave my home unless it’s to go to doc. appointments or the hospital.” ~D

“I have a blood disorder or chronic illness that is called ITP. People don’t know a whole lot about it but it is hard to deal with because I am constantly doing treatments, it is very low platelet counts and my immune system is destroying them. I have to take awful drugs like prednisone and azathioprine which is a highly toxic drug. Well anyway I have to struggle with this illness and your right, people look at me like if I am faking it and they don’t like me much now at work because I am always gone for blood tests, treatments, and acupuncture. People come to me and see that I look ok but I am not. I just hate for people to judge me, when they themselves cannot see what is happening to me…” ~R

“I feel so angry at the doctors, don’t know what’s wrong with me, and my husband is not always patient with the situation. A few days ago, he said to me (half-jokingly) “So, are you REALLY sick?” He and the kids are so used to me functioning at 110%. I feel very guilty that I can’t do the things for them that I used to.” ~S

“I was just at my grandparents’ house for dessert tonight… My grandpa is 74 years old, and he is so much healthier and energetic than I am at 19! He does things that I can’t even imagine attempting! And yet, because I am young, even those who understand that I am ill end up asking me to ‘run and get…’ or ‘would you mind…’ when those who are much older than me are also much more able to do those things!” ~M

“I have had Lyme for 16 years now and I hate when I am hurting so bad, people say, you look so good. If they only knew how you were feeling they wouldn’t say that. But you smile and go on. Five strokes, 1 heart attack and much, much more along the path of Lyme Disease.” ~Rita

“I am so fed up with people telling me ‘you look fine to me.’ They can not and will not understand that I can not do any more than I am currently doing for my depression. I was taken out of work, I am a single mom and I am tired of trying to explain depression to family members. They think I should just run out and get another job with no problem.” ~J

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