FINALLY SOME DIGNITY

This week was doctors week. As I live four and a half hours away I try to make appointments close together to make my life a bit easier. This week in three days I had four appointments scheduled for either myself or my children. Yes, you read correctly. I said four. This week was expenditure "plus" week, not just of money but also of my inner strength and perseverance. You see doctors week stresses me at the best of times. But I was expecting the worst this week because three out of four appointments required me to advocate for my condition, and one of those three had already insinuated that if she didn't know about it, it must not exist.

Advocating for Cowdens syndrome is physically and mentally exhausting. It is hard work. Why it needs to be, I have no idea. I don't expect every doctor to know about every single condition, but some doctors appear to take offence that you know something they don't. I belong to four online Cowdens syndrome groups so I am exposed to many different people with the syndrome. We're talking well over one hundred, not bad for a condition affecting 1 in 200 000. So it stands to reason that I may know a lot more about how this rare condition can manifest itself. I need to share to feel that I am receiving the right treatment. I need to be able to give some insight on what it's like to have this condition. It's not being a show off. It just is what it is - having the contacts.

My first appointment was with a new doctor. She also had a medical student sitting in with her. Alarm bells! Doctors with medical students don't like showing students what they don't know. But I couldn't be more wrong this time. She was pleasant and welcoming. She was delighted I had brought copies of recent blood tests and asked interested appropriate questions about Cowdens. She told her medical student that she loves learning from her patients and to embrace their knowledge. I just about fainted from the shock. Finally some dignity. She finished me off by saying that she can't begin to understand how hard it must be to continually have to advocate for myself. I was speechless.

Doctor number 2 was later that day. In all my career as a professional patient I have never come across a doctor like this one. Not only did he have star quality ( once a doctor to Nelson Mandela) but he was warm, funny and extremely knowledgeable. My younger daughter warmed to him immediately and I silently thanked God, because she doesn't do well at all with medical stuff. When the inevitable Cowdens medical history  arose he asked question after question. At one stage obviously impressed by my answers he asked me if I was a doctor. There was a moment of panic in my brain, followed by the feeling he could be thinking I was a smart arse. Again I was wrong. He complimented me on my knowledge and told me to never, ever stop learning and advocating for the condition. For the first time in a long time I was overwhelmed for all the right reasons. For the first time in ages I felt that there was hope. Later on Ciara told her sister that her doctor was impressed with Mum, because she knew lots of big words. If only she knows how those big words sometimes keep me awake at night.

Doctor number 3 was the big test. She was the one who gave us short shrift last time. She was the one that shut me down on everything I tried to say. She was the one who made me feel if she didn't know about it, it must not exist. In a welcome and surprise about face, she presented us with all the facts I had tried to share with her last time. I sat quietly but felt smug. I didn't even blink an eyelid when she presented Ashton with an article on Cowdens testing protocols. I actually felt like punching her but just felt relieved that my daughter would be getting what I know she needs. And it was ALL THE DOCTOR'S IDEA OF COURSE!!

So, there is hope and this week there has been dignity. Maybe one day a patient with Cowdens syndrome will walk into a GP and be told by them what needs to be done, not the opposite. When medical students thank you for educating them, yes there is hope for the future.

Till next time...xxx