If you have ever stared at a menu in a restaurant and looked over all the dishes or been asked to order at McDonald’s and you have looked up at all the different combinations of meals and side dishes on offer, you can start to get quite confused and lost. I also recall the feeling of looking up at complex math equations or chemistry compounds and wondering “How on earth do I begin to tackle this and can I find anyone else who is struggling as I am”…
I feel a little like that sometimes when I talk to others online who all have “autoimmune diseases and various peripheral issues and symptoms” and I feel like I am trying to connect with someone who has exactly the same ‘combo‘ as me. But there isn’t. There are always subtle difference in our symptoms and our backgrounds that makes it almost impossible to find someone with whom you can relate completely. I can remember how heartbroken I was when I joined a group of fellow sufferers who have all experienced terrible joint pain and flares, only to feel so alone again when I realised I was the only one in the group that could not longer drive because of my vision issues. This seemed quite a small thing to the rest of the group but it is an enormous issue for me. My independence is stripped away, my loss of control is increased, my ability to access doctors etc (anything really) is almost completely compromised and then the simple fact that being in terrible pain is one thing, but being in pain AND blind is another experience entirely. I felt lost and alone again. The rest of the group can not relate and do not have to cope with this.
Oh don’t get me wrong, I connect with a lot of things like, certain symptoms, certain feelings, certain medications, certain problems, similar reaction from friends and family and so on and so forth… but never someone who understands completely MY experiences and MY life. Not even my doctors have the slightest clue, or interest, in the many ways my life has been changed forever; simply because its not happening to them. They can go home and be Mr/Mrs X again. I can’t.
In the end I tend to think its not about the diagnosis and the hurdles that you have to go through in the search for a diagnosis and treatment; its more about how prepared we are to cope with whatever happens. That is our highest goal of all, the constant coping that goes into every day, every hour and every minute.
Also, coping can’t be a singular task, although there are quite a few things you have to be able to do yourself and a lot we just can not delegate, but no one can ‘COPE‘ on their own. I think the fact that society has not accepted this fact and has even required that people manage or cope as a measure of their worth and character has been a legacy passed down over the centuries borne of ignorance and tradition.
My mind has been churning over this question of ‘coping’ and I believe that there is more to coping with illnesses and life changes involving health, than any psychologist can reasonably comprehend; certainly the psychologists that I have encountered. You see most of Psychology seems to be aimed at helping the individual come to terms with changes in their lives i.e. death, divorce, depression, regret etc from the perception that we are able bodied enough to to do these things ie. Take a walk, Find a hobby, go on a holiday… What about those challenges that are involved with long term, chronic illness and loss of physical function, job, family, friends, hobbies, identity etc on the type of scale that only those who face these realities can comprehend? I don’t recall palliative or chronic illness being part of the psychology syllabus.
Hence we tend to turn to support groups for the bulk of our empathy. The problem with that is the people who turn to the these groups are struggling to cope as much as you. Its a never ending cycle. They bring their own set of values, issues and baggage to the support environment. They tend to be focused on venting, comparing, competing and indescribable sadness and loss. There has also been terrible bullying and abuse inside such groups which can hurt the most vulnerable of spirits, and the most fractured of souls. Not always is it intentional but it still leaves terrible scars on tender flesh.
Over the last several years I have dedicated myself to coping with this life instead of the endless questioning of Why? How? What’s going on? Where? Helplessness. Suffering. All those questions have ever got me are more questions, sadness and disappointment.
In the past 10 years I have been busy trying to read up, study up, research and become my own GP, Immunologist, Neurologist, chemist, therapist, Rheumatologist , nurse, counselor, physiotherapist… all these things in order to try and ‘solve’ what was happening to me… but I can’t. I have come to realize after all these years the only thing I can ever hope to do is ‘cope’ with what is happening to my body and my life.
To be continued…