By Ann Marie Gaudon
I’ve always said if you have an infection that can actually be found or perhaps a tumour that can be cut out, you’ll likely be just fine. If you have a chronic syndrome however, you’ll likely be on your own – and screwed. I have been diagnosed with several syndromes over the years; I think I’ve lost count. Have I been misfortunate enough to suffer from many different diseases? I highly doubt it. I see each syndrome as actually a “symptom” of a whole-body disease that there is no test for, no diagnosis for, and certainly no treatment for. If you add into the mix that I am female, this all serves to give me a greater chance of a lack of validation, a lack of respect, and a lack of any real research that might help me and others just like me.
It’s been my experience that it’s very hard to find a doctor to take these symptoms seriously when you suffer from a syndrome(s). In all my years as a patient I was fortunate enough to find one – and now I’m losing her. You see the deal (at least in my head) was that I would be dead before she retired but now she is retiring and I’m not dead. The deal isn’t going through. I’m suffering from anticipatory grief already. From day one she believed me. She listened to me. She never interrupted me. She validated me. She did her best to treat all of my symptoms including pain. She is the consummate professional that I’ve relied on for many years. She is an authentic doctor through and through. And now she’s leaving and I’m left gutted.
I see this in my work as a therapist over and over again: folks in pain plus experiencing other symptoms who cannot get any validation for their suffering and quite often not even a diagnosis. Do I feel special or privileged that I had at least found one real doctor in over 30 years of pain and symptoms? At times I sure do. Then I take a look at the whole picture and feel that it is pathetic.
Most of us that at least had the good fortune to grow up healthy held this belief that if we were to get sick or become in pain that a doctor would be there to help us. If they couldn’t cure us they sure would do their best to make us feel better. Then we grow up, get sick and in pain and reality hits – like a sledgehammer to our head. When did doctors stop caring about their patients? Was there ever a time when across the board they truly did care? I’m losing my jewel of a doctor and reeling from the uncertainty to come. What will happen to me now?
I would love it if you would share your own experience and feelings on this situation. I am very interested in having this conversation with you. Your turn…