Hi, I’m April.
I am the voice behind The Invisible Illness Club. Each episode and blog post is designed to help you not feel so alone. I can empathize with what you are going through, and I want this to be a safe place where you can feel encouraged and we can all lift each other up.
this is my story
I remember in my twenties, a few years after I had my son, beginning to feel pain in my lower back, but like all twenty-somethings, I thought it was just related to not being in shape. By my 30’s my back was a disaster and I began having bad headaches daily. At this time, I was a single mom, working a full-time job and trying to raise my son. I didn’t have the option to take off every time I felt bad, so I worked, no matter how I felt.
When my son was around 10 or 11, he was diagnosed with several mental health issues. As he hit puberty, his behavior only got worse. Now, my anxiety is increasing, I’m dealing with daily bad headaches, my back is a mess, and managing some tough symptoms, but I had to take care of my son and get him the help he needed. All of my energy, outside of work, was spent helping him. My life was overwhelming.
During this time, I also found out that my mother tested positive for a gene called HLA-B27. This gene means that she was more susceptible to an autoimmune condition and based on all her symptoms, they were beginning to test her. I took the genetic test myself and discussed my symptoms with my doctor but was told that while I was HLA-B27 positive, I did not display any symptoms of an autoimmune condition. My back issues were likely due to my low low back not settling back into place correctly after having my son 16 years prior.
In 2018, I met and married my husband Victor. He saw how I was struggling physically and encouraged me to get help. In 2019 I finally found out my headaches were migraines and began to get help with that. This was a huge relief and relieved a lot of my daily issues, but my back was still so bad that some days I couldn’t stand up straight and walking was a chore. At the time, I was teaching middle school, walking and standing was of course a daily requirement. The dull ache in my lower back became a sharp, piercing pain. Every morning, it felt like a battle to get out of bed. This was my reality for years, living with an invisible illness I didn't even have a name for yet. As my health kept declining, I made the decision to leave teaching in 2020. It was a difficult decision, but due to my health, both mentally and physically, leaving the profession was the best choice.
In 2021, due to my mother’s declining health, we made the decision to move near my family so that I could be a caregiver for my mother. The next year, my mom was able to see a new rheumatologist and received the diagnosis of ankylosing spondylitis and fibromyalgia, as well as some osteoarthritis. During her initial visit, the rheumatologist looked at me and asked if I had back pain and how long I had it. After telling her, she stated that I would need to see her also for testing.
I was given my diagnosis in 2022 and FINALLY started getting help and being heard.
I know what it’s like to wait way too many years to get someone to take you seriously and I know what it’s like to fight for a diagnosis. I also know what it’s like to fight the insurance companies for medications and have to switch to something else if they choose to deny it.
It took me a while to come to a place of acceptance and to begin to find more joy and hope in my everyday life instead of just keeping my head above water. I know how you feel on the best and the worst days.
That's why I created The Invisible Illness Club. This is a space to share your struggles, find support, and learn practical tools to navigate life with an invisible illness. You're not alone. Let's breathe hope into everyday life, together.
