Being Your Own Advocate

When you’re living with a chronic illness, you have to learn how to be your own advocate. You have to be an advocate when dealing with doubting and questioning friends and family. You have to be an advocate when dealing with a significant other who struggles to understand. Perhaps greatest of all, you have to be an advocate for yourself when dealing with a medical team larger than those seen on Grey’s Anatomy.

My medical team consists of a primary care provider, an anesthesiologist (pain specialist), a neurologist, a rheumatologist, a physiatrist, and a physical therapist. This may seem like a lot of people, but it was actually 2 doctors larger until a few weeks ago. After some unsatisfactory treatment and disappointing appointments, I have fired my pain management psychologist and physical medicine doctor. Since I’m going to have to deal with fibromyalgia for the rest of my life, I don’t have any time to waste with professionals who are not going to treat me with the respect and care that I deserve. Even though I was quite fond of my pain management psychologist and she helped me through a lot, there were a few issues and I couldn’t wait around to convince her of what I was saying.

The importance of being your own advocate is even more important when you have an “invisible disease” like fibromyalgia. When you have cancer, there are blood tests that can confirm your diagnosis, and physical symptoms that show that you are sick. Fibromyalgia, however, cannot be confirmed by any tests and there are no outward signs of the disease. This makes not only diagnosis difficult (it often takes years), but friends and family often struggle with accepting that you’re sick at all. My family, for instance, is not very supportive. I have a mother who thinks I’m faking it all to get attention, a sister who wonders why I can’t just “get over it,” and a dad who cares but doesn’t really ask questions.

When I was first diagnosed and tried to discuss my disease with my family, I was hurt when they didn’t believe me. The pain I felt was real, why couldn’t they see that? It was because they COULDN’T see it. I didn’t have a port or a bald head or IVs to “prove” my sickness. Over time, I came to accept that I didn’t have anything to prove. I live my life for me, and I invite those along on my journey with me who love me for me, and who enrich my life. I get to pick and choose who I allow into my healing journey and when I started to incorporate that mindset into my daily life, I was so much happier and I felt so much better all around.

For everyone else out there battling an invisible disease, do not despair! Be your own advocate, and the loss of control that you feel from having this disease will start to come back, a little bit at a time. And for those times when you’re feeling sad and alone, I’m here for you. You’re never alone. We’re all in this together!