Having an invisible illness is one thing and hard enough to cope with but, the lack of invisible illness awareness makes it even harder for people to cope with their illness.
Having suffered for a long time with both Crohns and Primary Sclerosing Cholangitis, it became apparent very quickly that a lack of invisible illness awareness made my daily struggle even harder.
Finding a toilet was hard, finding a clean toilet was harder and often finding a toilet with toilet paper was virtually impossible. Further to this, it is the embarrassment that you have used a public toilet once and then may have to run back in so quickly with people around you staring at you in a way that makes you think you have two heads.
Invisible illnesses and in particular Crohns, are hard to live with due to the uncertainty surrounding the illness as it is with a lot of illnesses. You are told from the day you are diagnosed that you could stop eating certain foods or try cutting out certain drinks but, the illness hits each person in a different way so much that one can be eating chillies like me, while others cannot drink milk or eat bread.
Invisible Illness Awareness. What does this actually mean? To me, it means being educated enough to be sympathetic, tolerant and understanding of what people could be going through without the usual judgemental attitude.
On the outside people suffering from an invisible illness can look fine but, inside we are screaming for a better day and for this misery to end. One of my last appointments before my transplant was truly like that. During a Viber call to my wife, she said…. You look well today but, I can clearly remember that I was using every ounce of energy to get myself to my appointment. Of course, we can look well and have better days than the last but, often the outside shell is an illusion of how we are really feeling.
Having an invisible illness makes us see ourselves very differently from how the wider world sees us. Is this because we are suffering and the suffering gets translated into an image we actually build up in our mind of how we think we look, not how we really look?
I used to wish that for just one day I could give my illness to someone else in order for them to really understand the struggle and fight we go through every day and, how we have to keep going in the face of adversity. Would that really help? We smile while our illness keeps punching us from the inside out and I often thought to share it for a day is the only way to educate people but, it goes a lot deeper than that.
How do we create more Invisible Illness Awareness? I believe that just by being able to talk to people while at the same time not being judged is a huge help. Also, I believe that it is about education starting from a young age which would help to go a little way to creating a more tolerant society.
There are so many invisible illnesses out there and so many people suffering in silence. More education is needed to be able to lighten the suffering and unless we talk about our suffering nothing will change. Finally, suffering from an invisible illness is not only physical, it is often a mental struggle that is overlooked in many ways.
Thanks for reading.
Peace, Love and Light x