Tendonitis and Misdiagnosis: Rachel's Experience With Chronic Pain

With another beautiful Wednesday comes another interview with an extremely beautiful person. As the ambassador for the verifier listener community, you may have seen her around 7 Cups a few (thousand) times. Thank you to @rachsxo for this wonderful opportunity to spend time with you and to all reading, please enjoy❤️

Q: Hello Rachel. Thank you for taking time out to talk to us today. Why did you choose to share your experience with chronic pain via the inclusivity diaries?

A: Hello, thank you so much for allowing me to share my experience! Chronic pain is often an invisible disability that can affect people of all ages and activity levels. I share my story hoping to encourage others experiencing a similar situation to keep looking for answers and keep fighting until a solution is reached.

Q: May you give us a brief summary of the condition you had that caused you chronic pain?

A: I suffered from extensor carpi ulnaris tendonitis due to overuse that led to chronic tendon degeneration. Essentially, one of the tendons in my dominant wrist became inflamed because I had been using it too much – at the time of my first flare up, I was studying American Sign Language, playing piano, competing in dance competitions, and taking two lecture style classes taking notes entirely by hand. Each treatment that my doctors tried only seemed to be a temporary fix which led my tendon to slowly fall apart over the course of three years.

Q: What were the challenges you faced suffering from tendonitis before you were able to get a correct diagnosis?

A: Throughout this time in my life, I was unable to do many things that I love. I couldn’t go full out in my dance practices, couldn’t play piano at all, and was the only student in my high school using a computer for notes and assignments which led other students to make up rumours about why I was seemingly getting special treatment. After dealing with a relatively simple injury for so long, I frequently wondered how many more diagnoses and treatments I’d go through before finding an answer. There was a point when my pain was at its worst that I started falling behind in school because I was unable to type notes for my classes, and I became very depressed and withdrawn because I let my pain consume me.

Q: How long did it take to get an accurate diagnosis, and how did it happen?

A: Technically the tendonitis diagnosis only took one month, however, the treatments that my doctors attempted were only temporary. Because of this, I was misdiagnosed to the point where it felt like my doctors were only guessing and hoping they’d get lucky. It was not until three years later that I was finally diagnosed properly.

Q: During this period, you were also a student in the university. How did you manage coping with school, and what adjustments did you have to make?

A: Both my high school and my university were very accommodating to me. As I had briefly mentioned earlier, I was the only student allowed to use a computer when other students were required to write notes, assignments, and exams by hand. When I got to university, I registered with disability services and had access to notes from a student note taker. I was also able to use a computer for long exams and was given extra time as needed. The height of my pain occurred in my third year during which my professors would send me their notes and would routinely check in with me to make sure that I had not missed anything. I also had a great relationship with the department head of my program, and she was willing to move heaven and earth to make sure I was doing okay academically, physically, and mentally.

Q: Were there any treatments available to cure or alleviate the condition, and did you have access to them?

A: I endured many treatments for my condition – occupational therapy, cortisone injections, numbing injections, ultrasound therapy, and many more until I finally received a surgery called tendon debridement & tubularization, meaning that the damaged tissue was removed and the remnants of my tendon were sewn back together.

Q: What support did you receive or would have liked to receive from people during the period of seeking treatment?

A: I found a great support system in many of my university friends. All I asked was that people would not dismiss my pain and would hear me when I would say I was suffering, and they did all of that and more. My friends were just as excited as I was when I told them I had finally gotten a correct diagnosis and celebrated with me when I was officially cleared by my doctors.

Q: Would you say you have a better understanding of chronic pain, and the people who live with them? Why?

A: My experience is unique in that my injury has been almost completely surgically repaired with only some range of motion problems and residual nerve damage that will go away slowly over time. Millions of people suffer from chronic pain with no permanent solution and can only rely on temporary relief to some degree. It takes such a strong person to keep pushing forward despite their body betraying them. I don’t know if I could ever have the strength to be one of those people, but I deeply admire them for their perseverance.

Q: What would you like to say about the healthcare system in your country, in respect of how long it took to get adequate treatment?

A: In regards to the time I waited to get adequate treatment, I did lose a little bit of trust in my country’s healthcare system. With each incorrect diagnosis, I felt as if I was being dismissed in the hopes that I’d stop coming back. I couldn’t help but think that this was happening to me because I am a woman, or because I am young and was looking for attention. When I finally received my diagnosis, one of the first things my doctor said to my mother was “she’s not making it up!” I have never shared how much hearing my doctor say that affected me, but I find myself thinking about it often.

Q: What would you have wished they had done better? (the healthcare system, medical practitioners and other medical staff you encountered)

A: Many of the procedures I endured were in response to a diagnosis that my doctors knew was incorrect. I received a cortisone injection for what my doctors initially thought was a triangular fibrocartilage complex tear even though an MRI had not shown anything of the sort. While I appreciate them for trying, I wish I had not endured a painful procedure for a condition that the doctors were well aware I did not have.

Q: Thank you for sharing your experiences. We would also like to know more about you (you’re pretty cool) and about your role on 7 Cups. How has the cups community helped you?

A: I have interacted with countless people through being involved with 7 Cups who have all impacted my life to a great extent. I would love to give a special shoutout to my fellow Verifiers’ Team leaders & team members – they all do incredible work and have a huge impact on the quality of our listeners. I appreciate every single one of you!

Q: How have you impacted the 7 Cups community in your own way? (doesn’t have to be anything big, you being here is more than enough)

A: As the Verified Listener Ambassador I have made multiple changes to the Verifiers’ Team by streamlining the verification process and allowing more accessible methods of verification for people across all sorts of timezones. I have also brought multiple old projects back, such as the Wall of Appreciation and Verifier Discussions.

Q: Has the disability support community been impactful to you in any way?

A: Words cannot express how grateful I am for the Disability Support Community. About a year and a half ago I was heavily involved as a community centered moderator. Each person I came across, whether a listener or a member, was able to empathize with me and helped me keep pushing until I received a diagnosis. The leaders of the community at the time were a joy to work with and became mentors and great friends of mine. Neither of them are active anymore, but I wish them both the very best.

Q: What’s your music taste like? Give us five song recommendations :)

A: Excellent question! My favorite song of all time would have to be Hawaii by Evan Roman, but some of my current favorites are Birds By the Sea by Banks, The House of the Rising Sun by The Animals, Gulf by Emawk, and Rapp Snitch Knishes by MF Doom.

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