Some good? and disappointing news #Undiagnosed #ChronicPain #ComplexPosttraumaticStressDisorder #Stigma #Anxiety #Referrals
As some of you know, I am struggling with a lot of different symptoms, many of which are not diagnosed. I have been trying for almost 2 years to get some answers. After seeing my orthopedist 2 weeks ago, he diagnosed me with hip bursitis and said I probably have a labrum tear. I then asked if he thought I might have a systemic tendon issue (due to other tears and inflammation I have been diagnosed with). He said that it is definitely a possibility that he thought of. Since then, I contacted my PCP and asked for a referral for rheumatology again and some labs that the doctor who does my testosterone shots recommended based on my symptoms. My primary finally said yes! She ordered a morning cortisol blood test and a catecholemine urine test. The cortisol came back normal, but I'm still waiting on the other one.
Yesterday I saw on the patient portal that my referral went through. When I read it, it said "41 yo man with chronic widespread musculoskeletal pain. Low suspicion of rheumatologic cause given multiple normal lab work ups. Patient requested rheum eval." I am trying to stay positive, but I'm pretty upset that she wrote "low suspicion" instead of using that energy to write a few of my other symptoms. I feel like I am going to be seeing a doctor who already has the assumption that nothing is wrong before they even see my face or hear my story. Why do I have to keep fighting the biases people have of me? I keep "firing" providers and getting new ones that are not much better. I do have a few very competent and caring medical providers, but unfortunately there's only so much they can do as a therapist, physical therapist, and neurologist who did every test she could think of.
My trauma has made me think that nobody cares about me. I feel like very few people actually believe that I know my body and when something is wrong. At the end of my appointment with the ortho, he told me to "trust your spidey senses." It was an amazing feeling to be acknowledged for having good intuition and that I know my own body more than anyone else. That validation was the jump in energy I needed to continue to fight for myself. I am so exhausted and want to give up often, but I'm not going to.
For the first time in my life, I am asking for what I need... and it hasn't been going so well. People who have known me as this passive person my whole life, do not like the change. My best friend and parents did not like the boundaries I set in our relationships and I don't talk to them anymore. The medical stuff has also had mostly negative results. It's so frustrating. How do I get to a place where I feel comfortable asking for things when I keep getting pushed down by people who are supposed to care about/for me? I thought there was an ethical component of medicine to help people and do no harm. There are hurtful biases and judgments healthcare professionals put on me due to my mental health diagnoses, weight, and gender identity.