There’s a balloon on my head or at least that’s what it looks like. How do I explain alopecia in terms that people may empathise with and dare I dream even understand? Our immune system is meant to fight infectious organisms and substances but mine decided over 25 years ago that this includes my hair. Yes, my own body’s defence mechanism went on a friendly fire offensive against my hair cells and killed them.
First it looked like hairs on the pillow and soon there were none left on my head. By none I mean none, at times of stress I have no hairs anywhere on my body that a woman would. However, I did notice little white hairs on my arms on Monday, which some may say but everybody does Fi – well my body hasn’t done so in over twenty years! My hair has grown back once and nearly back twice only to fall out again within a few months so now can hardly remember what it feels like to have any hair at all.
Being bald drained any outward self confidence, the bullying at school left their own scars to make for a vicious cocktail inside of me. Looking in a mirror became a phobia as I was scared to see the freak in my head in flesh and the ogre have physical form. I had zero therapy to understand it all and the doctors were as useful as chocolate teapots when I could see one but even then the control of my life was not in my hands. It is only now I have accepted fully that it is part of me, I will never be able to stop others reaction to it and do not care what they might say or do for there is no cure to reason to laugh at me. I am overdue buying a new wig, I feel like a change…one thing is for sure I’m not going blonde!
Last week I kept getting baby thoughts in my head, a miracle birth much like the one many were to celebrate later that week, which followed a day later by an old friend announcing the birth of her daughter after years of health issues. I was genuinely overjoyed as know how far she has come to get where she is now, achieving many things that to me still seem and are impossible for different reasons. The smile on my face however was not to last as I received a message on Facebook to tell me news of a girl I was at school with twenty years ago, she had overosed and taken her own life. Both people knew each other but one had been an off and on friend for over twenty five years and the other had been one of the bullies that reduced me to tears and suicidal thoughts throughout my teens. I felt numb. As someone that writes and campaigns for an end to the stigma on mental health as well as being naturally empathetic, I wondered what had happened to the girl I had known and had she secret torment that had no voice. It was not a sign of weakness or selfishness to take her own life, as when the rocking chair at the edge of the cliff breaks, it takes a very strong person to fling on, I have been there and it is not a pretty view or one I ever wish to see again.
I scanned my year photographs from high school that I intended to burn years ago and sent them to the girl that told me the news. I saw people’s faces and names I had not seen in twenty years trickle down my Facebook news feed as comments came in on pictures she and others posted. I could not bring myself to ‘like’ anything as was like being back in the playground with her usual French taunt in my ringing in my ears. Was I being selfish? Feeling that my pain was important as they were my experiences and memories of this girl, but ultimately felt they should be secondary to her friends and family dealing with the aftermath of suicide. It all left me with the strangest of feelings; nothing in life can prepare you for it and know what is right or wrong to feel or say. It comes at a time when I am considering setting up an organisation to support, spread awareness and educate on invisible illness such as depression to fibromylagia and endometriosis as feel along with my writing I need to take it to the next level but uncertain what way just yet. Perhaps her death shows how much pain we carry with us; we may have nobody to share it with or know where to turn. Just remember dear reader someone does care and will listen without judgement, never ever give up and always rember my mantra, believe it again.
On this World Health Day I have been thinking how many of us have so called “hidden illnesses”? How something that we cannot see lends some to act as judge and jury of how that impacts someone’s life, making them less “normal” and/or lesser of a human being. For example, if a healthy looking person came out a disabled toilet without a wheelchair, how many would tut because feel to use such facilities they should be as the image on the door? Really should be thought more as ‘accessible toilets’ as to remind us that they need to be exactly that – accessible. So those that need to use them are enabled to retain their dignity and independence whilst doing what all of us take for granted.
Our ability to live life despite apparent disabilities (physical/mental/hidden) do not change who we are inside. When someone gets a diagnosis today, they are still who they were yesterday or last week. It does not matter what the diagnosis or label says our inability is or because our body does not do or make the same as the textbook says it should in humans, does not make them less of human nor do people want pity. I can say from personal experience, it is often more of a relief to give it a name so can try to live life and adapt (if possible/applicable) to what this means. Please try to remember that for many illnesses there are no operations, cures or answers to why it happened.
For me the friendship, love, conversation, laughter, creativity, and acceptance of others gets me through the day. There are times when I want to give up as so tired from fighting to pain (mental and physical) but with my closest friends no matter where they are I know I will survive. Whatever health issues we may have, they do not matter, the world needs all of us. It is our differences that make the colours on the tapestry of humanity. It would be a very monochrome piece if we all were exactly the same, with so called “perfect” bodies, which did exactly as the textbook said – remember even machines need repairing now and again. So viva la difference and let’s paint the world every day in our multi-colours, showcasing that is what it means to be truly human.