“No news is good news”, right? We didn’t find cancer. We didn’t find tumours. There is no sign of MS. We should be happy. We should be relieved.
When I first became sick, I did feel like that. But more and more tests are done and still, there seems to be shockingly little information. Yet I am still left with this illness and it’s not going away. It spreads and becomes deliberating in entirely new ways - probably because, due to the lack of results, I have little clue on what I am dealing with.
So I don’t feel any relief when I am told, yet again, that there is nothing. I just want an answer. I want to know what is happening to me. I want to know how to help myself. I am tired of being in the dark.
Last week, I sat (and by sat, I mean sobbed) through a difficult appointment.
I was told that I have experienced a major trauma (eg. sexual abuse) that I am determined to keep hidden from myself and everyone else. He insisted that this trauma is the cause of all my pain and suffering. He refused to listen to me when I said that the only trauma that I have really endured is the fact five and a half years ago, I suddenly became ill and I never recovered.
Apparently, by “refusing to acknowledge” this event, my brain no longer functions as it should. Therefore, I’ve developed all of these physical symptoms over the past 5+ years. His argument was that I cannot improve without moving past this emotional event… but how, I asked, can I move past an event that never occurred? I can’t, he admitted (only because he swears that I am ‘blocking it out) so instead, I can only numb myself with addictive medication.
This is a doctor that I have seen for years and trusted to look after to me, to treat me… and he decided that he was out of options after trying extremely little and that it was easier to blame it on a trauma that has never occurred. When I fought against his theory and said I wanted to find a genuine cause, he was extremely insulted and believed that I was calling him stupid as I was not simply accepting his idea silently.
It’s not just the fact that he was trying to blame my entire illness on events that have never happened - or that essentially, he was trying to blame me and my thoughts. It’s that he was giving up and giving in. As a patient, it feels as though he cared little for the fact that my illness is worsening and that by merely blaming it on events that he cannot prove ever happened, he would merely be masking the symptoms and allowing them to develop. And time can only tell where that could lead.
I was asking for help. I need help. I deserve help. But I became just another CFS/ME patient to be dismissed by those I am trying to seek help from.
Why are CFS/ME patients being treated like this?
I have never walked out on a doctor before and I hope I never have to again.
People say to me “you might go into remission one day” and expect me to find hope in that. They want the thought to comfort me, so that I’ll suddenly be okay with having already dealt with the illness for five years. But in all honesty, it does nothing.
Yes, I might go into remission.
Maybe… one day.
I still don’t know when. I don’t know if I’ll have to wait another five years - or triple that. Even then, there is no promise that it will ever happen.
So I’m sorry, but I cannot wake up with the thought that perhaps tomorrow I will be a little better, because it would involve disappointing myself every single day. I don’t want to break my own heart over and over again. I also don’t want to plan my future around the hope that I will suddenly recover, only to have my hopes dashed.
Yes, I do believe that I will have enough improvement in the future that I will be capable of more than I am now, but that’s me being realistic and avoiding more sadness than is necessary.
I don’t usually get into this kind of thing, but it’s a special occation. Following Chronic Curve, I’ve completed the 30 Things About my Invisible Illness You May Not Know Survey.