Most days I try to be upbeat and create the illusion that all is well. When in actual fact I am rarely genuinely happy. If somebody asks me “how are you?” I never reveal how I really am. I try to hide this with a larger than life personality ( which is a complete facade) and talking lots, which I think may have become a nervousness thing where I just feel the need to talk about anything to hide/cover/mask what is really going on inside my head. I’m not faking being ill, I am faking being well. One of the most cruellest parts of ME/CFS and Fibromyalgia is that you constantly feel detached from everything and everyone. I constantly feel misunderstood and whether you like it or not, you always feel lonely even in a group of people. It is like you are on the outside looking in ALL the time. There is a support group in Orkney but it’s not really my thing so I have never been along to a meeting. Now I know that you are going to say “How do you know if you don’t try it?”. Each day I do my best to forget/ignore that I am different and going to a support group would probably make me indulge in self-pity. Something I try hard never to feel is self-pity or let these illnesses define who I am as a person. My boys bring me great joy and without them, I think I would have given up and let these conditions beat me. My life would be so very different without them.
People who suffer from an invisible illness are immediately judged for not “looking ill”. I tried to start a petition to change the disabled sign as it only engrains an image in people’s minds that you have to be in a wheelchair to be disabled which most certainly is not the case. I plan to try it again because there are so many people with invisible illnesses who are judged and doubted because they aren’t in a wheelchair. I want to raise awareness locally and nationally that invisible illnesses are REAL.
I used to wear a full face of make-up every day regardless. I wouldn’t dare set my foot over the door without my mask which I did believe for a time protected me. When the illnesses took over little by little I put less and less make-up on as I just didn’t have the energy. One way for you to tell if I am having a really bad day is when I have my full face of make-up on. Applying make-up is me overcompensating for how I really feel inside and it somehow makes me feel protected. But slowly over time the protection I have felt from my “mask” of make-up has faded away.