A while back someone posted on one of the support groups I am a member of asked for people to take pictures of themselves holding a sign with a message they would like to give doctors so that they know how we feel. My sign had a message which said that just because my problem may seem small to you [i.e. the doctors], doesn’t mean it is small for me. When I wrote that I was thinking about my experience with my rheumatologist. She sees people who are really really sick and she also sees me. I am not that sick at all. My condition is not life threatening nor has it caused huge problems for me in the past. But the problems it does cause me feel like a big deal to me and when doctors do not take these things seriously it feels like you are being ignored. It feels like the problems you’ve come to them for are invalidated.
As a future medical professional myself I never compare people’s conditions. Just because one patient is sicker than another doesn’t mean that they can be made to feel that their condition isn’t a big deal. I also try to put myself in the patient’s position and think to myself, “if I was this patient, with this problem, what might I be feeling?” and based on that I try my best to treat them accordingly.
Yesterday I had my 3rd review since starting Plaquenil/Hydroxychloroquine in November 2014. I expected my rheumatologist to be engaged, to ask questions and to do a physical exam but instead I found her to be disinterested, unwilling to ask questions and unable and/or unwilling to answer my questions. The only examination that she did was on my ankles as these have been causing the most problems. I explained that my wrists were sore. Her response was to say “okay”, she didn’t look at my wrists or ask any more about them. I asked her about my hair falling out and all she could tell me was that it might be my autoimmune condition but she didn’t look at my hair. I came out of that appointment feeling totally invalidated, she knows I have pain and she doesn’t doubt that but by not examining me and not letting me know what she is thinking she makes me feel as if she doesn’t care.
I felt as if I couldn’t tell her everything that was going on because she didn’t care. I felt as if I was bugging her more than being her patient so I didn’t ask about things I was intending to ask about which was daft because I had waited four months for this appointment but when you are facing someone who you feel doesn’t care what you are saying or seems completely uninterested, it is hard to go into the things that you want to discuss. It’s easier to just leave them.
This appointment has had a few outcomes:
- My ANA is now negative where it was positive before… but we don’t know what this means or what has caused it [although I believe it was the Hydroxychloroquine]
- The MRI of my ankle came back clear but it is going to get reviewed by a specialist to double check, and if it is clear I will get referred to physiotherapy [which is what I requested]
- My Rheumatologist didn’t say anything about the Hydroxychloroquine so I am going to continue it at 400mg as I was prescribed until someone tells me otherwise
- I can try OTC topical NSAID gel to see if that helps on top of the Naproxen and paracetamol – I have since bought Voltarol
- I need to get a new Rheumatologist – as suggested by many, many people throughout social media
It has been a day since my appointment and I still feel quite upset about all of this. I have been with this rheumatologist since I was 14 or 15 and she has always believed me, though is never able to give me many answers. She doesn’t seem to care that much about my case and makes me feel invalidated. But if I go to another Rheumatologist [who will be an adult Rheumatologist, not an adolescent Rheumatologist] they might not take me seriously either or even worse, might not believe me. I have so many emotions flying around, my head feels like a bit of a mess but I have decided that it would be best to ask for a referral to another Rheumatologist. Hopefully this new Rheumatologist will be closer to my University than this one was.