The path to diagnosis with a disease is not easy. However, being diagnosed with an invisible connective tissue autoimmune disease as a medical professional has had its own set of challenges. My journey to diagnosis was like many others with lupus and autoimmune diseases; fatigue, joint pain, lingering symptoms that no one could explain. I knew something was not right with me in 2016.
I had joint pains and muscle fatigue that didn’t make sense based on the activities I was doing and had been doing for most of my adult life. Over the course of nearly three years, I went to three rounds of physical therapy, an orthopedic evaluation and steroid injection, and even sought out two rheumatology consultations. All agreed that I had joint changes consistent with arthritis and tendonitis but there was no definitive diagnosis as to why it was not resolving. The rheumatologist couldn’t explain the pain, fatigue, and muscle weakness. I tried all kinds of therapies and modifications, but I wasn’t getting better.
This made no sense to me.
I had another preexisting autoimmune disease so my ANA (a lab test that is a marker for autoimmune disease) was always positive. I had low white blood cells as well. I saw a dermatologist for rashes I started getting when in the sun (a classic symptom of lupus) yet no one put the joint pain, muscle fatigue, and photosensitivity together. I started to think maybe I was overreacting, not being “tough enough”, I needed to push on through the pain and fatigue. Then I would look at my situation as a medical provider and know I was not overreacting.
I went to get a third rheumatology opinion at the insistence of my fellow medical colleagues. I saw a well regarded rheumatologist at a world-renowned hospital, and it was yet another horrible experience. He said that I had tendonitis and “nothing else” was wrong. Luck was on my side that day as despite the awful visit, the lab tests obtained that day showed both lupus and MCTD. Finally, I had a diagnosis!
I was relieved that I had some answers. But no one wants to be diagnosed with a chronic, incurable disease.
Going through the journey to diagnosis was a trying time for me. And the past five years from diagnosis to patient has shown me how broken our medical system is - it is overworked, overbooked, and not as compassionate as it should be. Many providers are too busy to listen to their patients and lack a ‘bigger picture’ perspective. I would never have treated a patient how I was treated – I spoke their language and provided a concise explanation of my symptoms, yet I was often dismissed. I was in total disbelief at the chaos, of lack of communication, and mistakes that were made. The medical profession for which I dedicated nearly 30 years of my life to was failing me. I struggle even now to put into words how devastating this whole experience has been.
Providers should trust that we, the patient, know our body better than they do.
Lupus and autoimmune diseases are unique, individualized experiences. I hope someday all providers who work with autoimmune disease embrace this fact!
It is very overwhelming thinking about how my life has changed since my diagnosis. I must mourn the loss of the pre diagnosis roles as Nurse Practitioner, my attempts to be Super Mom, and Wife and learn to accept that is not what my body can do for me and others now. Around the time of my diagnosis, I had developed pericarditis and was very sick. I could no longer work. Leaving my job, my “calling” during the pandemic was one of the hardest things I have had to accept. It was devastating to not help my patients and colleagues during this horrific health crisis. I’m still processing this loss of the Nurse Practitioner part of me.
I have had to learn to accept that trusting my medical team is part of my journey. I must hope that my doctors are doing the best they can. And unfortunately, a few of them likely will never live up to my expectations. But nonetheless they are my healthcare team. I also must accept that they will never really understand how I feel day to day or truly understand how bad and scary it is to endure a flare of my disease. I must learn to live with the medicines they offer and pray for the best outcome.
What can I do to help and heal myself? I can change my lifestyle and diet. I can practice stress reduction and self-care. I can follow my medical regimen and be an advocate for myself with my doctors. I choose to be positive and am committed to seeing all the blessings that I am surrounded by each day. Thankfully I am blessed with a fantastic, supportive, and loving husband, children, family and friends. I count my blessings every day! Modern medicine is making amazing discoveries and progress in the treatment of autoimmune diseases. Being educated on my diseases and how to manage them has also empowered me to live my best life. I am hopeful for the future!
I highly recommend reaching out for support. Being part of a support group of individuals with your similar diagnosis means you have support from people that really get you and what you are experiencing. The More Than Lupus support group has been a great source of support for me. There are also several national organizations that provide education and support to various autoimmune disorders. Understanding my diseases and getting support from my fellow warriors has really made such a positive change in my life.
How can I be positive in such a challenging situation? It is about choice. I choose to be happy, positive and upbeat. Trust me, I have bad days!! But I want to live a long, full life. I choose to march on and move forward! Be strong, reach out for support and be kind to yourself. I wish you all the strength in navigating your journey!
Jill Nelson, NP, Wife, Mother, and Lupus Patient
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