Realities of Living with a Rare Disease

Today is #RareDiseaseDay and I wanted to share my experiences of living with a rare autoimmune disease. Non-Radiographic Axial Spondyloarthritis (nr-axSpA) and Ankylosing Spondylitis (AS) are types of inflammatory, arthritic diseases of your spine, hips, and sometimes shoulders. With nr-axSpA, even though you have symptoms, x-rays show no damage to the joints and nothing likely shows up in blood tests. This disease affects less than 1% of Americans.

Genetics may play a role as nearly 90% of people with AS, have a gene called HLA-B27. Men and women have the same prevalence, and most of the time, symptoms arise before your mid 40s. While there are some treatments, there is no cure for these lifelong, chronic, painful diseases.

It took me 5 years, a dozen doctors, 18 blood draws, 9 MRIs. a bout with clinical depression, gaining 40lbs, selling a house as I couldn't walk up the stairs, and 3 visits to holistic practioners before I had a diagnosis. I was accused of imagining my symptoms, seeking pain medication, and even being overweight as medical gaslighting persisted.

Here are some realities of living with rare diseases.

1. Emotionally you are never the same. Depression and anxiety are real. Isolation, frustration, hopelessness become a mainstay.
2. Uncertainty about who you will become is overwhelming. Because these diseases are chronic and degenerative, the fear of losing your abilities and independence is ever-present.
3. Daily life takes on different and unpredictable patterns. Pain, fatigue, depression, and movement limitations render you unable to make and keep plans. You may have a great day, and by the evening, you can't stand up.
4. Limits to treatment. You try everything, only to discover that your immune system has a life of its own and it's not working in your favor. Your body is literally fighting itself.

Here are other realities.

1. You take each day at a time and recognize that living in the moment is empowering and exhilarating.
2. You appreciate simple things like a short hike or sitting in the sand in ways you never noticed before.
3. You empathize on a different level with people going through silent battles, because living with a #raredisease and an #invisibledisease strips you of identity as much as arms you with strength.
4. You look for balance! Movement, eating, meditation, breathwork, laughter, passion, purpose, friendship, family, relaxation, hard work.

I look at my #raredisease as a blessing. It has been a long road to get here. It will be a long road from here, but TODAY I am strong, I am able, I am grateful, and I have so much to give!