Having a chronic illness is more then just feeling unwell. It is all consuming, scary, and bit by bit it can eat away at your life until there seems to be nothing left.
Most of the time, like many others, I tend to provide the outside world with the version of me that looks well. I barely talk about the pain, the fears and the frustrations. I want people to see the person that I am without the illness colouring their views, but this also means that they only see a part of me.
Underneath the facade lays a river of emoitions ranging from anger, frustration, fear to simply feeling numb. Day upon day, as my body does yet another unpredictable thing, the mask gets harder to hold. This leads to isolating yourself simply because you don’t have the energy to provide the outside world with that cheery sarcastic person you have always appeared to be. As the days that I see people diminishes, depression sneaks back up on me, and I am finding it a fine line between staying mentally healthy, and sinking back into the all to familiar world of darkness that I have become accustomed too.
It is difficult to be in pain. It is difficult to feel exhausted for no apparent reason, and difficult to explain the invisible symptoms in a way that the uninitiated will understand. How can I possibly explain that I can’t even wash more then once in 5 days or cook myself a simple meal anymore? How can I explain it to people when I look so healthy on the outside?
I used to be a different person. Having essentially grown up with pain (be it emotional or physical) I became adept at pushing through. I have a stubborn streak, and this meant that I was able to force myself into my work/studies/social time even on the worst of days. I was able to push myself far beyond the point that I should have stopped, and it is this part of me that is most frustrated. For the first time in my life I have had to stop. There has been no choice in this. It isn’t laziness or a lack of motivation – I have simply reached a point at which my body has decided it can’t be pushed any more. I used to be extremely active, I used to keep up with my hobbies and travel around unaided even though I was usually only managing 2-3 hours of sleep a night. I had big dreams for what the future would hold. Dreams of what I would become, and what I would work as. Dreams of fixing myself somehow.
Alongside chronic illnesses such as POTS and EDS you are often forced into the position of having to reassess your abilities. As each day goes on, your dreams and independence are slowly stripped away from you. You are suddenly aware that all of the things you had worked towards may not work for you any longer; you may not be able to keep up with the pace of the type of work you have always dreamed of, or are in too much pain to keep up with your peers. Every aspect of your life and your future is now coloured by the knowledge that this unwelcome bedfellow will be with you for life.
So when those in the outside world are telling me to ‘buck up’, ‘get on with it’ or that ‘things will get better soon’ it makes me want to scream. The number of well meaning comments that go along the lines of ‘have you just tried to ignore it?’ or ‘I know someone with a disability far worse then yours and they run a business’, meant in the nicest of ways, actually lead to you isolating yourself more from those around you for fear of frustrating them with your (perceived) pessimistic views on life.
I wish more then anything that I could be totally honest with those around me, but like many other chronically ill people, I have learned that looking well leads to far fewer issues then laying yourself bare.
Perhaps one day I will build up the courage to speak these words aloud or to answer truthfully when someone asks how I’m doing. Until then I will continue to perfect the happy facade (whilst swearing under my breath as yet another joint goes on an unexpected and unwelcome visit to its neighbour).