About one year ago before I was diagnosed with Lyme Disease I started going to therapy. The not knowing if I would ever not be sick was crippling so I sought help. A year later I’ve decided to stop therapy due to scheduling and other issues. In our last session today my therapist brought it up that if we had more time he would have liked to investigate if I was helpfully or unhelpfully distrustful of doctors.
I’m very proud of myself for not yelling at him. But I wanted to put it out there what I told him.
For 1 year and two months of the sickest time of my life, every doctor I saw gave me no help. No diagnosis, no definitive treatment, no hope. They either said you can see if this pill works, stress less, or some flat out told me to deal with it. I have the most common bacterial disease in the country and literally 40+ doctors were unconcerned and unable to help me. I would either constantly rotate through their office or if I spoke back about their lack of ability to treat they would fire me as a patient. Upon following up with all these doctors to tell them how they failed, not a single one has asked for more information. So when I say I distrust medical professionals its 100% based on experience in their lack of expertise and lack of ability to do their job.
Do I still see doctors? Of course.Do I follow their protocol? Defiantly. Do I ask questions, do my own research, and question treatment. You bet I do. In a medical world with so many issues, we have to fight for what is best for us.
One truly awful doctor at one of the most prestigious medical schools in the area said to me that I needed to learn to live with “whatever was wrong with me” and that there was nothing anyone could do to help. If I had listened to his advice I would probably have killed myself because I was unable to cope with how sick I was. Instead (after a large breakdown) I still pushed, called, and got into every doctor who would see me and eventually found the one who has helped me get my life back.
Being your own advocate is a Herculean task and chronic illness is not for the faint of heart. However it is never over until you give up.