You Know Your Own Body: Diagnostic Odyssey of Autoimmune Conditions

Katie has a background in gerontology and psychology. During her long diagnostic journey, she has learned to advocate for herself with the support of others.

In this post, Rebekah chats with Katie, a Folia user who has lived with the experience of a 15-year diagnostic odyssey for her autoimmune conditions.

Rebekah: It’s great to chat with you, Katie. Tell me about your background.

Katie: In 2010, I received my bachelor’s degree in Gerontology and Psychology. I worked 11 years at an 18-bed home that specialized in Alzheimer’s care. I also had the pleasure to facilitate an Alzheimer’s Support Group and enjoy many conferences.

R: When did you find out about your autoimmune conditions, and what was that journey like?

K: In 2005, I started having joint and muscle pain and struggled with shortness of breath almost daily. I was diagnosed with Arthritis and Fibromyalgia. As the years went on, more symptoms and diagnoses followed. In 2015, I was diagnosed with Sjogren’s Syndrome and Mild Cognitive Impairment. I had been struggling with word finding, slurring, mixing up my words, remembering my nieces and nephews’ birthdays. Sjogren’s and Dercum’s Disease affect many of my organs and daily quality of life. Periodic Paralysis and Low Diffusion Capacity in the 40’s impact my breathing at rest and exertion.

R: That sounds like a long and difficult journey. What is it like to work with clinicians to manage such a complex set of rare conditions?

K: I have a great medical team consisting of a primary care provider, Pulmonologist, Neurologist, Cardiologist, Rheumatologist, Pain Specialist, Physical Therapist, and Sleep Specialist. I have found that coordinating care and communicating my medical information with such a multidisciplinary team has been difficult through no fault of their own.

In previous clinic visits, many physicians seemed perplexed by my rare diagnoses. Many have never heard of my conditions, look at me funny, or some will look them up right then. Sometimes I leave without resolve, for doctors themselves do not know what’s going on and can only offer “we’ll try to keep you as comfortable as we can.” This “learn as you go” mentality might be one of the most frustrating aspects of seeking care for rare conditions.

R: What have you learned about your symptoms over time? 

K: I have recently taken a genetic test, as I have been experiencing new symptoms of muscle weakness, muscle stiffness, spasms, periodic paralysis, etc. I am on a journey to find out what it is happening. My geneticist and I are currently trying to figure out whether my symptoms are due to sporadic ALS, spastic paraplegia, or other muscle diseases. Because we’re trying to narrow down on a specific diagnosis from multiple conditions that share similar symptoms, precisely tracking symptoms and observations of my health is a valuable tool for my health care team. For example, a graph of my lower back pain and thoracic back pain over time — along with genetic test results — will help my clinicians to narrow down between sporadic ALS and spastic paraplegia. 

Katie’s pre-Folia health journal to track routines, appointments, treatments and symptoms.

Before learning about Folia, I used a paper calendar to coordinate appointments and jot down symptoms. This system was inconsistent and inaccurate because it was easy to forget time frames and difficult to search for specific information. Even though I wrote down symptoms I experienced, it took some effort to flip through the pages and retrieve information on when and how they occurred. For a very long time, I was looking for something that would help me to track routines, appointments, treatments and symptoms.

A snapshot of Katie’s pre-Folia symptom tracking notes

Folia has become a valuable part of my daily routine. There’s less stress in having to remember everything, and the transition from pen and paper to Folia has been pretty smooth. I could set up treatments to repeat daily, weekly, monthly, or any other increments. The reminders have helped me to take my medications on time throughout the day. I no longer have to search through pages of notes to find my symptoms. In a single place, I can personalize all the symptoms I need to track. Subtle changes in symptoms are important for my physicians because my symptoms vary from day to day. I use the app to input when my appointments are scheduled, along with my goals and questions for each visit. During appointments, I pull up Folia on my phone to retrieve information on what’s going on.

R: What advice would you share with others in the autoimmune community?

K: I recommend what you often hear: bring someone with you to your appointments because there is a lot of information, and it is hard to retain it all. If no one can go with you, then take notes and do not feel bad about it. Sometimes the doctors will even write a brief summary with next steps for you. You can also ask to record the verbal conversation on your phone.  

I am lucky to have a great support system that I call after the appointments. I follow up with them to discuss, cry, or laugh. It’s important to have an outlet. I used to be very independent and private, but I am now letting people in and depending on others from time to time.

“You know your own body. Stick with it.”

I’m learning that I have to stand up for myself. Some doctors have belittled me, denying the symptoms I experience. They conclude I’m not feeling what I’m feeling. If you’ve had a similar experience of not being heard, please remember: you know your own body. Stick with it.