I was speaking with a colleague (we will call her Jade* to protect her privacy and because I like that name) about my current gripes – stomach troubles, lack of energy, aching back, aching…everything. I told her I felt I had something underlying- a bigger problem that I just wasn’t ready to face yet. I knew this coworker has RA. I knew because she had told me, and not because she looked, acted or worked any different from the rest of us.
Autoimmune disease is often invisible
Autoimmune disease is tricky like that. Unlike many medical issues like a broken bone, a hernia, or a torn ACL, an autoimmune disease is more difficult to detect. It lingers under the surface, eating away at your joints, intestines and eyes among other things (your soul sometimes, am I right?) without a clear reason why.
I mentioned to Jade that I was hesitant to seek medical care due to negative experiences with doctors that I have had in the past, as well as the notion that once I started down this road, it would likely be a long time before I received “answers” and even longer until I received any “solutions.”
Currently accepting applications for a (good) doctor
I asked her if she had a doctor that she would recommend and before even finishing my question she loudly said “NO”. She explained that she had a wonderful doctor, who treated her holistically, listened to her problems and suggested exercise and dietary changes that may help her condition. Unfortunately, this doctor had recently had the audacity to retire and enjoy his golden years.
My colleague described her experience with the next doctor who took over her rheumatology care. Please be advised: the following may not be suitable for children… Just kidding, maybe it’s just not suitable for me.
Pills, pills, pills
Jade said that the first thing that happened was she was prescribed two heavy hitter medications that are common in the treatment of RA. Now, Jade had managed this long without pharmacological intervention, and side note: she also expressed to this doctor that she was actively trying to get pregnant, so probably not the best time to be loading her up with pills.
She asked him about her blood work and if he was certain that she had RA and not perhaps something like Lyme disease, which has been rampaging through the area. His response: “You have RA because I told you that you have RA.” UH. WHAT?? Disclaimer: I may be paraphrasing here a bit because I am quoting a quote relayed by someone else, but you get the idea.
This made me sad. She asked him about possible dietary changes that may help. His response: “You could cut down on the red meat, I guess.” She was a vegetarian. Insert face-palm emoji here.
Find the care you need and deserve
Within the year she had “fired” this doctor and moved on to finding another. I told her that it was sad that others might not know strategies to naturally aid in treatment of autoimmune disease. As physical therapists we have a strong knowledge of exercises as well as non-invasive, non-pharma techniques to manage our pain. We also both have explored dietary modifications that may help. But what are people to do if you do not have easy access to such knowledge and resources when some doctor’s explanation is just, “because I said so”?
This friend’s story frustrated me, but I feel it illustrates an important point. Any one with a chronic illness needs to do everything they can to find the right doctor. Sometimes we need to gather resources and ask for help again and again until we get the answers we need. The key is to keep looking until you find the right doctor- someone who listens to your questions and treats you as a whole person and not a walking diagnosis. Do not accept mediocre care. We all need and deserve so much better than that.