Refusing to settle

There were times when I told myself, “This is just how life is now.” I tried to convince myself that pain, exhaustion, and constant flares were all normal. Maybe it’s just something that I’ll have to endure for the rest of my life.

One of the biggest turning points for me was realizing that I can’t keep being dismissed. I stopped accepting the doctors who didn’t take the time to investigate my symptoms and concerns. I started to advocate for my needs, refusing to be pushed aside.

Eventually, I found a doctor who listened. We built a partnership based on trust, and that changed everything for me. For the first time, I felt seen and supported. I now had a doctor who deeply understood my symptoms and the effect GPP was having on my life.

Being comfortable demanding more took time. Throughout the process, I kept reminding myself of a few things:

• Know you deserve to be heard — I refused to accept that there was no treatment to help my GPP and to be passed from doctor to doctor with an inaccurate diagnosis. Knowing that my voice and concerns deserved attention kept me motivated.

• Never give up — For me, never giving up means not losing hope that your situation can improve. I never stopped researching GPP, finding out about new treatment options, meeting with different doctors, and identifying ways to connect with others in the community.

• Develop a partnership with your doctor — Finding a doctor who I connected with made all the difference.

Since then, I promised myself that I won’t stop searching and learning, not just for me but for everyone with GPP. I still have hard days where I feel defeated, but now I don’t let those days define me, and I remind myself that tomorrow can always be better. To anyone who feels stuck or unheard — please don’t settle.