My Name is Rachel. I am 28 and I have multiple invisible illnesses: Ehlers-Danlos syndrome, mast cell activation syndrome (MCAS), dysautonomia, postural tachycardia syndrome (POTS), fibromyalgia, chronic fatigue, gastric dysmotility and more.
FINALLY A HOLIDAY
After waiting for four years, I finally had health clearance from my specialist to take a long awaited family holiday to Tenerife. I was so excited. The day before we were set to travel, I had a substantial flare-up. My entire body was filled with burning and pain. I was vomiting, dizzy and constantly feeling light headed. My arms and legs were weakened from the pain, and I could hardly hold myself up. On days like this, I rely on my mobility supports, in addition to the support and understanding of my family.
When we arrived at Tenerife airport, I was approached by two security guards who asked me to stand up and get out of my chair. When I told them I couldn’t do that, they asked if it was because of my legs. This was based on the assumption that because I am in a wheelchair it means I have no use of my lower limbs. I tried to explain to them about my conditions and why it means I rely on the wheelchair. The security officers either did not understand me, or decided to ignore me, as they attempted to lift me from my chair.
Thankfully, my family intervened and spoke with the security officers and explained the importance of me staying in my chair. The security officers understood perfectly fine when spoken to by my father and husband; though they had failed to let me explain before attempting, forcibly, to remove me from my chair.
THE JOURNEY HOME
Unfortunately, the journey home was not without issues either. In line with the airline’s procedure, my family and I boarded the plane first – to allow me the time and support to be seated before the rush of other passengers. As we boarded, another passenger shouted “just because you are apparently disabled, it means your whole family has to board early with you?” I burst into tears. If only they knew that I pray every day to not be labelled and placed in the ‘disabled’ passengers sections. Instead of freely walking onto an aircraft with a bag full of duty free, I have a medical bag full of medicines and equipment.
It is disgusting to be faced with verbal abuse and aggression simply because I am in a wheelchair; facing daily judgement and torment from people because I don’t ‘look’ sick.
Living with these conditions, which aren’t visible, is a struggle. Surviving and coping is a struggle. I don’t look sick because I put on the most incredible act when really my conditions are hell. They burn silently strong. I know they are there, even if people cannot see them.
THE DIFFICULTIES OF INVISIBLE ILLNESSES
Having multiple invisible conditions is the hardest thing in the world: the constant judgement, abuse, unkind behaviour and endless challenges, on top of having to manage symptoms. The amount of times I have been approached, or stared down by people for parking in a disabled bay even though I have a valid badge is shocking. When I am sat in my car I look like any other 28 year old. Then I get out and I may have supports on my knees and crutches. Only then when they see these obvious physical disabilities, do their judgemental looks turn into looks of acceptance. Since when did we need public acceptance to be ill? Why do we still have to put up with the stigma surrounding the term ‘disabled’?
I am hopeful and positive, that one day the stigma will be lifted and individuals with invisible illness will be free of judgement.