“You don’t look ill”

I have lived with an invisible chronic illness of some kind for over 24 years. I was first diagnosed with Rheumatic Fever, then Lupus(SLE), then Cluster Headaches, then Myalgic Encephalomyelitis (ME) and then most recently Fibromyalgia. I have spent most of my adult life battling chronic illnesses without any outward scars to show for it. In my teenage years I was most concerned with not letting anyone know I was ill, fitting into pack.  If asked, all my friends would have told you that I was as strong as I was tall; as fun-loving as I was a kickass and my superpower was definitely convincing everyone I was OK. I became so good at my chameleon-like abilities that when I had flares the people around me were often left surprised and bewildered.

I get told all the time that I don’t look ill and while it annoys the hell out of me, sometimes I feel a tinge of pride. Even though I am now so tired of being the strong one and really  wish I could just moan about how much my body aches; how fatigued I am; how my brain is like Swiss cheese half the time and how I just want one day, one normal day without my illnesses on my back. I also love the fact that I am able to mask my pain and look gorgeous at the same time. I don’t want to look like I feel. I don’t want to see the look of pity on people’s when they see me out and about. I don’t want to be that person who they saw lately and looks like she is going to die. NO! So on the rare days out, I make sure my nails are done, but they wont know it took me almost a day to do them. I make sure I smell divine, but they won’t know that today I was experiencing skin sensitivity and that showering felt like being rained down on by shards of glass and that doesn’t take into fact that I used up all my spoons to just shower. They must never know that the clothes I am wearing, as nice as they look, are hurting me as we speak. I wear the ‘I am ok’  mask like a pro.

Since my mobility became limited and I now use a wheelchair, My cloak of invisibility doesn’t seem to be as effective as it once was. People now look at me in either one of two ways. They either stare with disgust, as if I was a pretender to the wheelchair user throne or I get the god awful pity stare. Worse yet there are days people just look right through me as if I wasn’t there. I have had the experience of speaking to a shop attendant who in turn answers my husband instead of me. Now, these are the situations that get right on my left tit. I usually takes all of my self restraint and my husband’s strength to not hit someone.

I have had more than a few hair raising moments over the years and had a few near misses. I have had a much too intimate relationship with pain. However, when someone tells me you don’t look sick, I then weigh it for intent and if it passes scrutiny, I do store them in booster mode as a compliment. I know most Spoonies hate being told they don’t look ill and I know it stems from not being believed for so long. However, since we don’t have lots to celebrate, I have chosen to use this as a compliment no matter how it was intended. It doesn’t mean I won’t give you a telling off if I think you are being ignorant and I am the first to remind people that not all disabilities are visible. I also have no qualms about staying in pyjamas all day.  I believe that we have enough things to get us down, we have to find ways of turning some of our bad into good. In order to make myself feel better, I try to make my illness invisible because looking ill and feeling ill is more than I can bear. However, I refuse to allow people to treat me as invisible. I am too fabulous for that. So this, my friends, is my new super power: I turn invisibility into visibility and the visible into the invisible.