I spent a week debating whether or not to send my rheumatologist a message about my increasing joint pain. While my finger and knee joints were aching badly, there wasn’t likely anything we could do about it via message. Ultimately, I decided to take prednisone a tad more liberally than usual to cope until my next appointment so I could discuss it in person with my doctor. A few days later, at the end of a particularly stressful weekend filled with high pain levels, my husband found a letter in our mailbox saying my rheumatologist had quit. In fact, it said that she had given her resignation over a week ago.
I felt blindsided and abandoned when I read the letter late on a Sunday night. It was so unexpected. It’s a major upheaval in the life of any chronically ill patient when one of their essential doctors has to be replaced. My mind started filling with all the things I would need to do. I had to check my medications and find out when I’d need new prescriptions. I’d need to choose from the other doctors in the practice, who were conveniently listed in the letter. I would need to call the office soon with my decision so that I wouldn’t have to wait longer than three months for my next appointment (which was due in two months). I spent an hour frantically googling the best rheumatologists in my city in case I was unable or unwilling to stick with the practice for some reason.
It all felt overwhelming. When you live with lupus it’s important to have a good rheumatologist caring for you. I was at a very low point emotionally, due to my disabling pain levels, so I found it harder than usual to cope with the loss of a competent doctor. I’m nervous that it could take me a while to find another doctor that I get along with that is well-versed in lupus.
My rheumatologist prescribes my critical lupus medications (currently azathioprine, Plaquenil, Benlysta, and prednisone). She and I were on a journey together for the past year trying to figure out my chronic neck pain. She was the second rheumatologist to care for me after my first one didn’t work out. She saw me through the end of my pregnancy and helped me navigate life with lupus and a newborn.
One positive is that my doctor was part of a large practice, so the other doctors can (or, are obligated to) provide care for me during the transition period. My previous rheumatologist was the only one at his practice, so if he had quit on me then I would have likely been at the mercy of the eight month-long waiting lists for anyone seeking a new rheumatologist in my city.
My journey with lupus has been a somewhat tumultuous one. It started in November 2015 with a massive lupus flare (but I had no idea what was wrong with me at the time) while I was living abroad. After the flare, I saw a primary doctor, a rheumatologist, and a pain specialist in Germany over the next six months who all told me I was simply overweight and anxious. So I gave up on the German healthcare system and suffered from undiagnosed, untreated lupus for 15 months until I could get back to the USA.
Once I was diagnosed in 2017, my rheumatologist insisted I only take Plaquenil for six months before trying anything stronger, and I spent those six months being very sick. I finally was allowed to start azathioprine (an immunosuppressant) in July, but two months into the treatment I discovered I was pregnant. Of course, this complicated things significantly.
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My first rheumatologist had never treated a pregnant lupus patient before, so he was quite nervous about everything. It was his unwillingness to prescribe prednisone during a lupus flare (despite the urging of my maternal-fetal doctor) that was the final straw for me. That was when I switched to a different doctor who had a lot of experience with lupus and pregnancy.
About six weeks after Baby Meena was born I went through an intense postpartum lupus flare. Since I wasn’t breastfeeding, I was able to start trying different medications to treat my lupus. Over the past year I’ve tried all sorts of things for my pain and other symptoms, including Benlysta injections, but I still have not reached a point where I felt my health was stabilized. We were getting closer, though. And then my doctor quit.
Having my doctor quit is yet another bump on the road along my lupus journey. I’ve been through a lot and I want to have stability with my health. I don’t want to start over with a new doctor-patient relationship.
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A member of my lupus support group recommended a specific doctor at the practice and I was able to make an appointment with her in two months – only a week later than I would have been seeing my previous doctor. I have to admit, I’m quite nervous about meeting my new doctor.
Unlike my eye doctor, who I see once or twice a year, my rheumatologist is a constant – with appointments every three months, several messages in between visits, and usually one or two urgent visits yearly. Lupus affects all aspects of my life and controlling it is critical to my health. I need a doctor who is kind, empathetic, supportive, and willing to help me work out all the odds and ends of this disease.
I don’t know why my other doctor quit. Perhaps she had an issue with the practice or a personal situation. Even though I found it very upsetting that she was leaving, I don’t blame her.
But the unpredictable nature of lupus requires me to have constant care. A few months ago I was reading about a friend of a friend with lupus who was having a rather great day, and then woke up the next morning feeling so sick that he went to the ER. He ended up being in kidney failure. It can happen that fast.
I am constantly aware that a simple cold, too much sun exposure, or overexerting myself could send me tumbling into a lupus flare that changes my life. The vigilance is exhausting. I never know what is around the corner and I need someone prepared to treat me at all times.
Fielding a situation like this is never easy when you have a chronic illness, but I’ve done what I can and now I’m just waiting for my appointment. It can be tough to stay optimistic, but I’m doing my best to remain hopeful that things will go well.
If not, I suppose I can always quit on my doctor.
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Above photo by Dương via Pexels; modified by My Meena Life.
Feature photo by Lukas via Pexels.
It’s so frustrating when your doctor quits. My therapist recently left her practice and I did not handle it well. I wasn’t going to start over with someone else…and she had a very strict non-compete. Fortunately, she asked for an exception and was able to keep me at her new practice.
I hope you love your new doctor! This might turn out to be a positive.
Julie
It really is, Julie. I’m glad you were able to go with your therapist! The therapeutic relationship is much harder to establish than many other doctor-patient relationships. Thanks! I’m hoping that I’ll end up with an even better rheumatologist, or at least gain a new perspective. 🙂