One More Diagnosis Doesn’t Change Who I Am
Guest post by Diane Talbert. Diane is a Blogger, Speaker, and Patient Advocate at Power Beyond Psoriasis. She is an inspirational fibromyalgia and psoriatic arthritis warrior. Read below for her inspirational story.
If you’re living in pain everyday that’s not concentrated on just one knee or one elbow, it would undeniably be very hard to realize that your pain is changing. Whereas my joints were always painful and swollen, I noticed one evening that my muscles were also aching.
And how strange that was, because I hadn’t done any vigorous exercises recently! I decided it could be a strain and left it to heal on its own for the next week but very quickly, weeks turned into months. Collectively, my usual fatigue from psoriatic arthritis was also beginning to become more pronounced.
Something Was Wrong
I consulted my doctor and after a few tests, I was diagnosed with fibromyalgia. It’s a mouthful to say, I know. But more a mouthful to take in too. I had so many questions! What was this? Where did it come from? How is it going to affect my life more than my existing conditions already are? This happened 3 years ago, and I remember my shock as well as how I had taken quite a mental tumble into near hopelessness. But I had a very strong support system – my husband, my children and my grandchildren. Not to mention the wonderful people I had come to befriend throughout the past 20 years of advocating for psoriasis and psoriatic arthritis too!
Kickstarting AGAIN My Fight For Life
The 17th century Japanese swordsman and philosopher Miyamoto Musashi famously wrote, “Know your enemy and know his sword”. I dove deep into answering all my questions about fibromyalgia because the only way I was going to overcome this was to know it as well as I could. It is important to distinguish that while psoriatic arthritis (PsA) and fibromyalgia are related, one does not cause the other.
PsA merely increased my likelihood of developing fibromyalgia because my body’s prolonged inflammation over the years had sensitized my pain sensors, sending them into overdrive. And whereas PsA is pain and swelling in the joints, fibromyalgia affects the muscles.
Not Backing Down On My Mission
After so many years of being the teacher to fellow psoriasis warriors who’ve needed guidance, support and encouragement, I’ve learnt to become a student myself too. I’ve spoken to numerous individuals who’ve shared their best practices of coping with fibromyalgia to improve my quality of life and I’ve definitely remained an open book, sharing my experience with anyone who asks. I may be one more figure to the statistics but I’m also one more voice to this special community.
Most of what I’ve busied myself with point to a specific goal; ending the stigma associated with psoriasis and everything that comes with it. Also, raising awareness within the medical community to find a cure. For the past 20 years, I’ve had the great privilege of hosting monthly support group meetings, volunteering at organizations, speaking at annual Town Hall meetings, and being a panelist at conferences. Educating and advocating for this cause is the purpose of my life.
Warriors Need Their Safe Space Too
As harsh as it might sound, sometimes, the support from our families and friends is not enough for us because nothing connects quite like someone else who suffers from our disease too. The empathy and the care my family show me has always been tremendous and unexpected but journeying with fellow psoriasis warriors through the monthly support group meetings I host has been equal parts healing too.
Every day, we fight for ourselves to be seen and heard by society. But at each support group session, we can finally lay down our guard and breathe a little deeper. Comrades side by side, we catch up with one another, laugh out loud at hilarious recounts of stories, and sometimes weep a little for someone else’s pain. I dare say that in a year, the number of people who would’ve benefited from these sessions will double.
One-Fifth Panelist, Four-Fifths Human
Aside from attending Capitol Hill meetings as well as speaking annually at Town Hall Meeting, I also had the honor of making up one of the 5 persons on a panel for a FDA conference on psoriasis and psoriatic arthritis. There were dermatologists and fellow psoriasis patients-turned-advocates like me.
This was really an extension of the work I had already begun — raising awareness for this disease in the hopes that medical research would soon find a cure. After all, the recent innovation of biologics was a breakthrough for our community.
Being a panelist has given me the autonomy to guide the team at the FDA towards fulfilling its mission of protecting public health where it ensures that drugs consumed are safe and effective. It also sheds light on a very important perspective that is close to my heart: the future of psoriasis awareness movements.
I remember how seeing fellow psoriasis warriors around me in that auditorium that day fueled me with so much encouragement. I felt the assurance that my efforts and my determination all these years will not be wasted because there are many people fighting alongside me.
Away from friends and colleagues, and within the safety of my home, I am still the same authentic woman everyone meets outside at events, speaker sessions and the workplace. I do get to be a little more vulnerable, but I firmly believe in carrying myself with consistency.
What I project at home should be similar to how I am with other people, dignified, confident and compassionate. And I hope my grandchildren will grow up to have even better qualities than I do because they are the future of this 21st century. So, I look forward to tomorrow with expectant faith and hope that I can make a change in my own ways.
Be sure to visit Diane Talbert at Power Beyond Psoriasis to learn more about her personal story and advocacy.