A lot of people with an invisiable chronic illness (ICI) hate the phrase "but you don't look sick" or "you look great though" or "its hard to believe you look fine"
None of the above make any of us feel any better... at one point I was so frustrated I wanted to shave my head and tell people I had cancer just so they would leave me alone and believe me that I am extremely ill and disabled.
But today I am realizing that there is more to it than just being frustrated that people don't believe us, or at least me. I may not look nearly as sick or disabled as I am but at the same time I don't look almost anything like I did when healthy or even what I look like when in remission.
I am quite paler then I was most of my life or how tan I make sure I get when healthier. I have always hated being pale (only thing that stopped me going goth considering how much I love vampires lol :) I have pictures of me as a child at my family beach house looking darker than some of my cousins who are actually African American. I always find darker skin to be more beautiful and healthy. (Well unless you come from a culture that is truly born to be pale like the lovely red heads of Ireland or the Scandinavian Vikings, then you look pretty damn good pale at least in my opinion)
I have spent my life living in the sun and when I got older and my time for playing in the sun was restricted by work or study I would tan in UV beds... I actually tend to feel healthier too when I got a UV tan if I hadn't been able to be in the sun for weeks or months. I don't know if it was a needed boost of vitamin D or just the fire spirit inside me getting renewed by the heat (that is an image I used to get in my mind while relaxing/resting in the beds).
I also hate my weakness, it isn't overly obvious how damaged I have become while sick on the outside but I was muscular and fit (I could squat 250lbs and bench press 160 while weighing only 110, now I am lucky when I can lift all my groceries or a gallon of water). Its true you can't see the damage to my muscles but you can see the 20lbs I have gained of fat (and since muscle weighs more than fat that is a lot of chub). My legs have almost no definition to the calves anymore, my thighs rub together and I have had to buy new sets of jeans at least twice and can't come close to fitting into almost anything I loved to wear when healthy. My breast were only a B cup but with pectoral muscles as strong as mine were they almost seemed fake they were so high and firm and perky :) but now I am heavy starting to sag D and I honestly miss the perky lil boobs I had. I had a six pack for years. Even when it wasn't totally defined it was always flat. I may have been prideful but my body was powerful it was strong and had been used more than once to defend itself from attack. It was attractive and that gives a woman a sense of power all its own.
So now I don't get the understanding I deserve for being sick and disabled... I get yelled at or dirty looks when I use MY handicap pass, or wheel around in my wheel chair till I feel alright to stand and then walk because my circulation needs the leg movement so badly (but if I can walk I don't need the chair I must be faking it right?) And then on the other end I am stuck with weakness and vulnerability I am both unused to and most days unable to stand (I have always been able to protect myself to be defenseless is terrifying and I never dealt well with fear) and I feel unattractive and my pride is crumpled.
Why do I have to get kicked when I am down especially when almost no one is willing to admit or able to understand that I am down?
