To the Rheumatologist Who Won't Take My Pain and Symptoms Seriously
To my rheumatologist,
I know you see lots of patients, and lots of them may be sicker than me. But I need to tell you this:
You have failed me.
Before you go feeling too bad, it is worth noting that you are not the first to have failed me.
I’ve had pain since puberty. It started in my ankles. My family doctor at the time sent me to a podiatrist, who suggested a good pair of shoes. Then, I started having pain in my knees. Growing pains, the doctor said. It would go away.
The pain didn’t go away. It took until I was 17 years old to be referred to a rheumatologist. That rheumatologist did the best he could. He ran blood. He sent me for X-rays and MRIs. The blood work was unusual, but the imaging was pristine. He took my pain seriously and tried many different drugs, none of which worked. He was resigned to treating the symptoms instead of finding the cause. I gave up, and he let me. I went years without seeing him.
When I went away to university, I got a new family doctor on campus. I was missing class and sleeping all day because of my pain and fatigue. She was horrified. She put me on state-of-the-art drugs for my fatigue, which caused my C average to jump to an A average. I felt heard. I felt seen. I felt cared about. She didn’t stop there. She referred me to the best of the best in my home city – the rheumatologist that would know what to do. That is where you come in.
Each time I visit, I’m given a questionnaire. Am I able to work full-time? Do I have difficulty dressing? Do I have trouble taking care of myself? Do I have difficulty with mobility? How would I rate my pain? To be fair, you didn’t create the questionnaire. It is flawed. I feel that how seriously you take my condition should be based on better questions, but I suppose that isn’t your fault.
I may be able to work full-time, but I get into bed right after work. I don’t have the energy to cook or clean. My social life in non-existent. I don’t date. I don’t rate my pain an eight because pain is all I have known – I’m not trying to be tough, pain is my normal. It doesn’t mean that it isn’t severe. You let your fellow tell me that I wouldn’t be so tired if I just exercised more.
You compare my blood work to that of your other patients, many of whom are senior citizens. While my CRP and ESR may be low compared to theirs, I’m 27, and they should both be 0.
So please, hear my pleas. My quality of life matters. Life is more than being able to work and get dressed, especially in my 20s. Don’t minimize my pain by telling me my blood work numbers are low in comparison to others. Don’t resign yourself to treating my pain instead of finding the source. Stop being conservative – I shouldn’t have to wait until I’m no longer able to work or dress myself to be entitled to the best treatment possible.
I wish I could tell you that you have at the very least taught me to be a strong advocate for myself. But you haven’t done that either. The family doctor that I got in university? She has taught me that. And she continues to be my unfailing advocate, sending you faxes and e-mails, and calling your receptionist when you don’t reply. When you won’t take my symptoms seriously, she does. When you only treat the symptoms, she looks for the cause. And when you are conservative in prescribing me medication, she is aggressive. She knows I have waited 16 years for relief, and can’t afford to wait a moment more to live my life. She goes above and beyond.
Because you continue to fail me.
I refuse to wait for my life to begin. I refuse to allow you to gloss over my pain. And I refuse to continue allowing you to convince me that my quality of life doesn’t matter. I am going to be a better advocate for myself, starting now. And my first message to you is:
You have failed me for the last time.
We want to hear your story. Become a Mighty contributor here.