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  • Writer's pictureMaggie Douglas

There are Some Things a Self-Help Book Cannot Cure

When suffering from chronic pain for several years without relief, the last possible thing you want to hear is that “maybe it is all in your head”, especially from a medical professional that you are supposed to be able to trust. 

After almost 2 years of figuring out the cause of pain in my fingers, I was diagnosed with Juvenile Idiopathic Arthritis at 15 years old. I was put through a whirlwind of possible treatments in an attempt to stop the progression of my arthritis and pain. Most of the medications didn’t seem to give me the amount of relief that I was hoping for, so we continued on a trek to find the right medication. This continued until I was completely trasnsitioned into adult rheumatological care.

When I began seeing my adult rheumatologist, they immediately took me off all of my medications; they wanted me to start from ground zero so that they could observe and see if I even had arthritis. I didn’t think my medications were helping much, however, my pain quickly spiralled downhill as soon as I was taken off. The doctor only believed in the science behind arthritis and never did much of a physical exam of my joints; they wanted to observe how my blood levels would change. This was just the beginning of my frustration and I still trusted that my doctor was only doing what was best for me.

After months of no changes in my blood work with continuing pain, the rheumatologist finally opted to try a new biologic and see if it would give me any relief. With the many other biologics I had previously tried, this one still failed to provide the pain relief I was hoping for. When I tried to advocate for a different treatment, my doctor shut me down and just took me off all medications once again. When I continued advocating for a new medication, the doctor just told me that, “they do not prescribe opiates at their clinic,” when I had never once mentioned anything about that type of medication as an option. This was incredibly frustrating and caused my mental health to severely deteriorate as I was also dealing with the struggles of being a first-year university student.

I went into my next appointment hoping that I might be able to advocate for myself and hope that we might find answers for my pain. I was so wrong… At this point, my rheumatologist was completely convinced that I didn’t have arthritis and never had it to begin with. Knowing my body and that I had been living in continuous pain for years on end, I demanded some potential answer for why I was feeling this way. The doctor’s answer made my heart drop, by suggesting that “my pain was all in my head”, and recommending that I read a self-help book to cure me. Let’s just say that was not the answer I was expecting or wanting, and this appointment ended in me bawling my eyes out in the doctor’s office pleading for one last chance at answers. From my sobbing pleas, the doctor opted for one last MRI of my spine to see if there were any signs of damage or inflammation.

It was incredibly confusing that I was desperately hoping that there were signs of damage in this MRI, not because I wanted to be in pain, but simply because I wanted answers so badly. I was deeply struggling trying not to gaslight myself and balance being in school at the same time. My mental health was at an all-time low and I would have breakdowns and cry over the slightest things, feeling frustrated, confused, overwhelmed, and angry all at the same time. At the time I didn’t realize that these emotions were completely valid for the experience I was going through and this caused me to further distrust myself and my body.

After the long-awaited MRI, I was impatiently waiting for a call from my rheumatologist. The call came and I was overwhelmed with anxiety hearing my doctor say that the MRI “did show signs of damage caused by previous arthritis, but that there was currently no active inflammation and therefore nothing we could pursue further.” The weight was partially lifted off my shoulders knowing that advocating and listening to my body did lead to some answers, but at the same time, there was still lingering frustration that I was still in a lot of pain and the doctor saying they could not do anything.

Since then I have been able to transfer to a new rheumatologist. This experience taught me the importance of listening to my body if I know something isn’t right and advocating for myself. I was anxious about transferring to a new rheumatologist because I was terrified to have to repeat the same experiences. I had always thought advocating for myself was not super important and that the doctor just knew what to do, but this has taught me that I always need to stick up for myself and voice exactly how I am feeling to all of my doctors. I still get anxious going to any type of doctor's appointment, hoping I won’t have to go through anything like that again.

I don’t have all the answers and treatments that I am hoping for, but I am hopefully headed in the right direction. This is your reminder that you know your body best and that advocacy is crucial. This is also your reminder that your emotions are valid and it is okay to be angry and frustrated if you are not getting answers.

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