Doctor vs. Patient

The duties of a doctor are to take care of his/her patient, protect and promote the public and the patients’ health, and listen to the patients and respond to their preference and concerns. Other duties are to provide a good medical standard of practice and care and to work in partnership with other staff members and patients. A doctor’s duty is not to criticize or make their patients feel like an idiot or guilty.

My last appointment, my doctor made sure to make me feel like my needs and concerns were not important. I’ve told my doctor in the past that I’ve started experiencing major back pain and I was pretty sure it was a side effect to the medication I was taking. This pain was nothing I’ve ever experienced before.

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I would often be bedridden for days, I would cry non-stop because no pain medication would stop the pain in my back, no position would bring relief and no hot pad or ice pack would soothe my back. I was desperate to stop the pain, so I stopped taking methotrexate, since I read it can cause back pain and blood in stool and you must stop immediately and tell your doctor. So I stopped and told my doctor. She scolded me and told me that I shouldn’t have stopped taking methotrexate; she suggested to lower the dosage and see how I feel after that and continue with the Humira.  

I didn’t stop taking Humira because that was supposed to be the miracle drug to make me feel better and active. But one day after coming home early from work, my boyfriend saw me balling my eyes out and unable to move, he told me I should stop taking Humira. He started looking at the side effects of Humira and told me I should have never started Humira. Patients with scoliosis should not be taking the injection because Humira can cause the scoliosis to worsen, since scoliosis can be a side effect of Humira. My rheumatologist knows I have scoliosis, so why did she prescribe this to me? Or did she not have the knowledge of what the side effects were?

He was outraged by the lack of information my rheumatologist had, how stubborn she had been when I told her about how much pain I had been in and her lack of compassion towards her patient in pain. This day is when I took my holistic practice super serious. I was going to be off medication battling a serious autoimmune disease-essentially I was going to be walking in the dark; unsure if this was the right thing to do for myself.

Getting off medication has been the best thing I have done for myself-I’ve been strictly on a gluten-free, paleo and anti-inflammatory diet. And I’ve taken supplements to replenish my health like turmeric, vitamin-D, calcium and probiotics. I feel great! I do have aches and pain, but not as bad and as paralyzing as I had when I was on medication. I’m a functioning human being; I can work full work days now and enjoy my weekends.

As a doctor, I would think this is great progress for an RA patient to manage pain and symptoms without medication, especially since I had a history of uncontrollable pain and inflammation. However, when I went to my appointment, she essentially said “Why are you coming to see me if you’re not listening to me and taking medication?” I was appalled by her reaction…did you not hear that I was immobile on medication and now I can run every single day?

This is this reason why we need to bring awareness about rheumatoid arthritis to everyone, including doctors. We need to communicate about what works for us as an individual and see if it might work for another patient. We’re the ones battling with the disease every day and we’re the ones who truly know our body the best. It’s time I get another rheumatologist.

Who else has battled with communicating with their doctor about how they feel or seeking alternative treatment? What have been your moves/changes? 

Aimee Espinoza