By Jen Swisher
Even though she is a medical professional and diagnoses others every day, Jen Swisher still suffered dismissals and misdiagnoses in her two-year journey to a dermatomyositis diagnosis. She wrote this article about her odyssey for Myositis Awareness Month (MAM) in 2024 for the Hippo Education website. This year, Jen will serve as one of several medical professionals on a TMA webinar during MAM 2025.
Here is an excerpt from her article.
Navigating a chronic illness as a patient and provider is both a burden and a blessing. There are so many facets in which being a physician assistant (PA) has served to my benefit as a patient. The average diagnostic delay for dermatomyositis has been quoted between two to five years. I was able to recognize and piecemeal my symptoms for a more expedited diagnosis and was able to backdoor myself into rheumatology to start treatment right away. This has increased my empathy toward patients who are in a purgatory of sorts with vague symptoms and falling through the cracks of obtaining diagnostic testing, referrals, and insurance hurdles.
I’m able to contribute ideas to my multidisciplinary team when it comes to my treatment regimen. When new symptoms arise, I have a decent barometer of when I need to be evaluated and when I can let things ride. However, the burden comes with knowing too much, not being able to turn off my PA brain, and increased anxiety when it comes to risk-benefit analysis. Advocacy, empathy, and open-mindedness are paramount in fostering meaningful patient-provider relationships and facilitating optimal outcomes.
To read more about Jen’s story, check out her blog on the Hippo Education website.
Jen Swisher, PA-C is a board-certified emergency medicine physician assistant and clinical assistant professor at Chapman University’s PA Program. Don’t miss Bridging Experience and Expertise: Myositis Patients as Healthcare Providers on May 29 at 6:30 ET. Register here.
Your message is amazing! I have tried all those medications, even IVIG infusions, they all had great side affects, now only on 5 mg of prednisone, my doctor wants me to try again the hydrocortisone that I did a while back. It seem to bother my stomach after a period of time. Are you aware of a support group in the Upstate New York area that I could meet with. I do have a great doctor in Buffalo, NY but I’m sure she very frustrated as I am why I am having such difficulties with medications. I have the muscle problems, difficulties with walking, my neck it not good, now I have feelings that my wrist are tight. My skin is thin and getting blood marks on my arms.
I would really like to come to John Hopkins for there opinion and what I can to do for this disease.
Kind regards,
Nancy
It would wonderful to hear from you.
Hello Nancy. TMA Upstate New York Myositis Support Group meets virtually every month on the third THursday at 7:00 PM ET. Register here: https://us02web.zoom.us/meeting/register/tZItcuioqTkjEt0G2XOCQa3zidGRydv-6rFy#/registration. TMA also has many other support and affinity groups that you can join online. Find the list here: https://www.myositis.org/patient-support/support-groups/. See all of our groups and events here: https://www.myositis.org/calendar/.
If you want to be seen at the Hopkins Myositis Center, you can ask one of your doctors to refer you there.