Using our role as ‘professional patients’ to learn and pay it forward

I recently opened a fortune cookie to reveal a message saying, “Your education will empower you to make informed decisions in your professional life.” That may have been true in my career, but it feels even more so now in my life as a professional patient.

I don’t remember the first time I used the term, but I was speaking with someone about how sarcoidosis affects the body and how one of my medications works, and they were impressed by my knowledge and understanding. “Oh, do you work in the medical field?” they asked. “Yes. I’m a professional patient.”

Chronic illness is a full-time job, though there is no salary and no time off. On the contrary, every day is a sick day, and we must do the work while managing fluctuating symptoms from multiple conditions. In this position (which I never applied for), my primary duties include:

• Coordinating regular appointments with 11 physicians, plus physical therapy and biweekly infusions
• Managing inventory of 14 prescriptions from three pharmacies and six doctor-recommended supplements from a separate distributor
• Maintaining communication with providers through multiple online portals and follow-up phone calls
• Frequent contact with insurance, pharmacy, and medical offices to confirm coverage and prior authorizations
• Advocating for myself and my community in personal, medical, legislative, social, and educational areas

Recommended Reading

Feb. 9, 2024 Columns by 🦋 Kerry Wong

With sarcoidosis, maintenance therapy isn’t always good enough

I was officially diagnosed with sarcoidosis in 2015, but this career path began many years before then.

In late 2007, I began to notice a variety of symptoms that didn’t seem to make sense. I was severely fatigued, had widespread pain throughout my body, and often felt weak and dizzy. I had already been dealing with headaches and gastrointestinal issues for years, and my gynecological problems had begun to worsen, as well.

Despite all that, I didn’t look sick, so myriad doctors didn’t take my health problems seriously. They didn’t take me seriously. I was forced to take matters into my own hands. If I couldn’t get “traditional medicine” to help me, I had to educate myself about alternatives.

I tried acupuncture and Chinese herbal medicine. I attended a center that offered chiropractic adjustments, trigger-point injections, physical therapy, and massage. I tried heat and cold therapy, cupping, and transcutaneous electrical nerve stimulation.

These treatments helped alleviate some of my symptoms for a while — until they didn’t. New symptoms developed, including rashes and bumps on my legs and swelling around my feet and ankles. The good news was this could no longer be denied; I could no longer be dismissed as “just depressed.” Doctors had to see that it was real, so now they could give me answers and make things better, right?

Well, not entirely. They identified “some kind of arthritis, probably autoimmune” (and an autoimmune thyroid disease that I didn’t even know to ask about). It still took years to accurately diagnose my sarcoidosis and other comorbidities.

Knowledge is power

With each new diagnosis, there were new lessons to learn. How do these conditions manifest? What new specialists do I have to see? How do the treatments work? What side effects should I be aware of?

Again, it was incumbent on me to educate myself. I found disease-specific organizations and medical center websites. I attended awareness and advocacy events, webinars, and conferences. I joined in-person and online groups for patients with these conditions.

Learning about our diseases is empowering. This new data enables us to make informed decisions about treatments, providers, and other ways to live well with sarcoidosis. In fact, an upcoming conference presented by the Sarcoidosis Research Institute later this month focuses specifically on that theme.

Empowering the Patient Journey: Living Well with Sarcoidosis will be held on Saturday, April 25, from 1-5 p.m. EDT. It is billed as a “free virtual conference for patients, families, caregivers, and clinicians designed to inform, inspire, and support a healthier, more hopeful life with sarcoidosis.” That sounds like the perfect way to honor the spirit of Sarcoidosis Awareness Month.

Personally, I am both honored and excited to be one of the featured speakers at this conference. The greatest thing I can do, after learning for myself, is pay it forward. As with this column, I share my experience to help educate and empower our community.

But that’s only the beginning. The conference continues with leading medical experts discussing the latest in sarcoidosis symptoms and treatment, as well as guidance on how best to manage the disease. Topics include fatigue and quality of life, mental health, and navigating healthcare interactions.

I believe this conference will become a valuable resource for professional patients like me. As its website notes, “If you are living with sarcoidosis, or caring for someone who is, you deserve clear information, compassionate support, and real hope for the future.” I couldn’t agree more.

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.