What I Learned When a Doctor Put Her Bias About Medication Over My Needs
Four years ago I went to my checkup appointment with the rheumatologist I had at the time. I remember her coming into the room and asking me the usual routine set of questions. How was I feeling? How was I tolerating the medication I was currently on? Did I have any questions or concerns? Since being diagnosed with rheumatoid arthritis it has been mandatory that I get routine blood tests done to see how my body handles the medication I’m on and if the inflammatory markers were improving, among other tests.
One of the tests showed that certain inflammatory markers, which are known to cause destruction to the cartilage in the joint capsule, were still elevated. Clearly, the medication I was on was not enough and I needed something else either entirely different or in tandem with the one I was already on. So, after my doctor went over test results and we talked about what the next step should be she said, “You should take Orencia.” This wasn’t my first go around with a rheumatologist. I was about eight years into my diagnosis so I was expecting an open dialogue where I could discuss my options. However, that option never came.
At that time Orencia was fairly new on the market and the only way to administer this medication was to sit in a chair for a few hours with an IV in your arm, hence the term infusion. I was extremely uncomfortable with this idea as I already had run into issues with two prior biologics in the past. After some time of taking those two other biologics they just stopped working and I also experienced strep throat many times.
My body was very sensitive to these powerful medications and that was just an injection form. The saying that nobody knows you better than you is very true. As a veteran patient I’ve come to learn that tuning into my intuition even more has helped me create a positive patient-doctor relationship, something I unfortunately didn’t have at this time in my life. During that time, I didn’t have a good feeling to go forth with the infusion. So I asked, “I’m not comfortable taking an infusion, what are my other options?” The doctor said, “There aren’t any” as she shrugged her shoulders. I looked at her in disbelief, knowing this was not true at all.
I had done my own research on medications and had been told when I first got diagnosed from other doctors that methotrexate would always be an option for me. As long as I wasn’t planning on having a child and if I was sexually active to use protection, because it could be severely damaging to the fetus. I was doing neither. I asked the doctor, “What do you mean I have no other options? What about methotrexate?” She replied, “Eh, I don’t really like giving out that medication, because I had a 17-year-old girl who was on it and she got pregnant.” Mind you, I was around 25 years old at the time this conversation took place. I made it clear to the doctor that I wasn’t in a relationship nor was I being sexually active. Even if I was, it was insulting that she thought I wouldn’t use protection or be responsible, knowing what this medication could do to an unborn child.
After going into a whole explanation, I felt I wasn’t being heard. The doctor clearly didn’t care about what I had to say or how I felt about what I wanted to do with my body. Those of us with chronic illness know that all medications come with risks; there is a game of trial and error. How was she so sure infusion would be the best route for me? If this was the only option from stopping destruction and there was no other medication out there then yes, I would have no choice but to take it.
The point is, I did have a choice but was denied my right to medication options just because a doctor clearly had a bias about giving this medication out to young female patients. It was as if she didn’t want that responsibility on her shoulders if something bad were to occur. Isn’t that what a doctor signs up for though? They are dealing with life or death situations, after all. My RA had worsened while I was seeing this doctor and she wasn’t helping to stop the progression. She would mention my diet and ask if I was following a gluten-free diet and taking fish oil and turmeric, etc. I was following my diet – I knew all about this years before I was her patient, but that wasn’t the only answer.
It’s as if she just wanted me to take the easy way out to suit her needs. Not mine. I left the appointment that day feeling more confused than ever, with millions of questions running through my head but no answers. What if the Orencia infusion didn’t work, then what? Would methotrexate be an option next? How come top doctors at Mayo Clinic offered it to me at 18 years old with no hesitation, but now I was being denied it at 25? I felt abandoned, alone, scared, in pain and was swollen all over my body. I needed help and I wasn’t getting it. It didn’t matter that she didn’t like giving out this certain medication. A doctor’s job is to make his/her patient feel comfortable, not full of fear – and she did the latter.
I knew I deserved better treatment and a doctor who would work with me in creating a treatment plan I was most comfortable with. After all, I was the one who would take it, not her. After some time, this doctor left the practice and moved to California to pursue another job in the field. When I asked her who she would suggest I see, she wasn’t helpful at all, saying I could pick any of her colleagues. That left me on a run to find another doctor. I eventually chose a doctor on my own and the first thing he said to me at my appointment was, “What do you want to do?” The word “you” is all that stuck out to me. It was a complete 360 from the previous doctor who never considered to even ask me this question. I zoned back into the conversation and giggled to myself, and nervously asked, “What are my options?” He then proceeded to tell me several of them. I eventually got on methotrexate and have been on it ever since.
I now have a different doctor who I absolutely adore and it makes me think how I would have been today if I had found him sooner and skipped all these bad apples. The last doctor I had wasn’t bad, but he just ended up not being a good fit. I needed something more. I give him many thanks though for forging ahead, giving me options and support. I’ve come to realize more than ever that the past can’t be changed. I often got myself into thinking, what if I did this or that?
It’s unfortunate I had to be put through the ringer, so to speak, with doctors, and my trust in them was non-existent until I met the doctor I have now. One of the most important relationships in our lives will be with our doctors, and if it’s necessary to break up with one, do it sooner rather than later because chronic illness waits for nobody.
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Thinkstock photo via Wavebreakmedia Ltd.