Everybody talks about how hard it is to overcome developing a chronic illness; the pain, learning to adapt your life to your new body but what a lot of people don’t talk about is the battles to get help and the psychological problems that come from having to rely on someone else.
When I first developed symptoms, back at the beginning of 2011. I, due to my personality, ignored it. It wasn’t until the winter of that year that I reluctantly went to see my GP. I had been suffering with chest pain and was diagnosed as having Costochondritis. I was told it would pass within a few weeks, maybe months. I am still to this day suffering and this is what began my fear and disillusionment with the medical profession but unfortunately, a chronic pain warrior must rely upon the medical profession.
Throughout the next 5 years, I’ve been asked to try many procedures in order to make positive changes to myself and my illness, each of which has made things worse. As someone who has major control issues, this has been a huge psychological impact on me. My latest 2 procedures have caused me to lose faith in the doctors charged with trying to fix me.
Approximately 3 months ago it was suggested that I have anti-inflammatories injected directly in to my damaged hip, despite no definitive diagnosis. I queried it and was told that it was going to be used as a diagnostic tool as well as a therapeutic tool and so I agreed. The injection was a horrible experience as the doctor carrying out the procedure had to readjust the injection site due to arthritis which had apparently not been disclosed to him. The injection also had local anaesthetic in it which I was told would start to work within a few minutes. Once the injection was completed I was asked how I was feeling, which was worse, upon completion of paperwork etc I was asked again. When I explained it was still very bad, the doctor said he believed it meant I had been misdiagnosed and the injection would not work for me. The procedure left me bedridden for days and in more pain than usual since, I’ve also lost more mobility. When I returned to my original doctor, who had referred me for the procedure, and explained what had happened I was accused of lying, then upon reading the notes from the procedure he claimed the Dr must have done the procedure wrong and demanded I had it again. I explained it terrified me and was told if I did not do it he would sign me off from his department. I reluctantly agreed again and so the procedure happened again. As I expected, and stated, it didn’t work and I am still trying to recover, three weeks later.
What this has done is left me terrified of any and all meetings with drs, I’m filled with anxiety and dread at the thought of meeting any doctors.
However, how do I as a Spoonie continue? Spoonies need doctors in order to keep some resemblance of normality and quality of life but they scare me to death. I guess what I’m trying to say is that we might grumble but honestly there are so very many reasons for it, so please give your spoonies the benefit of the doubt. Life is hard, and drs please remember that theres a person at the end of that file, one who is probably scared to be there, so treat us with respect. We don’t really have a choice but to trust you and for the control freaks amongst us that’s terrifying in itself.