I have tried for many years now to get to the point of being able to be one of those ‘inspirational sufferers’. The type that the world loves to point to and say “look at that person, why can’t you be more like them?!”
I want to. I really do.
I would love to be the type of chronic sufferer that looks and moves completely normally and carries on life as normal; albeit with pain and meds. The type they put in commercials and tell inspirational stories about…
But I can’t.
I have tried for many years now and tried many drugs so that I can move, talk, walk, see, eat, socialize and act like everybody else, but it has always been outside my reach and I have had to face the fact that I am not that ideal sufferer.
I have read many personal stories where people have espoused that they beat their disability through the power of their mind and spirit… and this has made them victorious and accepted.
Sadly that didn’t work that way for me.
I have spent decades turning things over over and trying everything I can to be a poster child for what autoimmune diseases should look like. It has caused a mountain of depression and guilt when I have not achieved what society thinks I should.
Why have I failed the chronic test? How?
What do these wonderful people have that I don’t?
Am I a bad Chronic person because I can’t do all the things that they can? Why has my body chosen to shut down and torment me, while others can still walk, eat, drive, work and live relatively ‘normal’ lives?
The truth is I don’t know. And neither do my specialists.
When they explain to me that my illnesses have spread and become systemic, causing widespread damage and impairment, I still can’t believe that all of this is true and, worse still, that it isn’t going to stop.
While I am still trying to manage terrible hurdles like pain, lack of sleep, loss of abilities and life choices, I am also reminded of the other sufferers who are out there running marathons or running businesses and managing to do more than I can.
Bad Trish! Bad Autoimmunitygirl!
It’s bad enough to have health and physical abilities taken away, entirely another thing to feel like a failure at being chronically ill too.
I have felt that I must leave a lot of chronic support sites because I can’t relate to a lot of the abilities that many members still have, and it is very isolating when you have more than one autoimmune disease causing disability in many different areas and parts of your body.
These diseases have spread and worsened over the years and so I have less and less in common with many other chronic sufferers.
Occasionally someone will write how lonely and painful chronic life is and I can’t help but feel that any loss of abilities is both lonely and painful.
My life has become a very quiet one and I try to create an environment where I don’t have to think about the outside world too much or my inability to fit in any longer.
I spend a lot of time deliberately avoiding situations where I am reminded that life has changed and will continue to change.
Perhaps this is not the ideal situation but for now it is the safest and kindest thing I can do for myself and my health.
I must just ‘be‘.
I can’t afford to let myself think that I am failing at being chronically ill because I am not wheelchairing down the Swiss alps or limping all over the Himalayas.
I want to enjoy my life as much as I can, and this world seems too quick to judge and label those that don’t fit into their preconceived ideas of what chronically ill sufferers should look like and act like.
So for now I manage today and hope that the future will be a different place, with different meds and opportunities for all.
And perhaps everyone can be accepted exactly as they are.