The Journey of Invisible Illnesses
***Trigger Warning*** Mental Health
“Just try harder.” Harder to hide it or harder to get better? Something I would never have questioned during my personal and professional life is becoming bed-ridden. I don’t mean becoming so tired that I needed a nap, I mean not being able to move and questioning whether or not I had a future.
I had the tendency like most millennials to work non-stop and then monetize every hobby and side hustle I could think of. Add living in an immigrant household working harder than everyone else was not a question but a way of life. I had been trying to break barriers, discipline myself into a corporate career and then traveling around the world solo. I was very active and if you ever asked me what my hobbies were this is what came to mind: the gym, hiking mountains, flying drones and traveling. This was all great, I felt like I had a lot going on for me. Until one day I began blacking out and dropping on the floor. The symptoms gradually became worse and eventually taken to A&E.
As someone who was fairly healthy growing up, I assumed I would get better. I left A&E after several hours of waiting, with more questions than answers.
“Just pray more?”
“Maybe you’re being punished?”
“What did you do to yourself?”
As a person of faith I know this happened for a reason, but to have illnesses weaponized against you can be problematic, I say can be it is. After awaiting an MRI scan during the National Lockdown I was eventually diagnosed with FND (Functional Neurological Disorder). Which is often described by Neurologist Professor Jon Stone as a “software” issue of the brain, not the hardware (as in stroke or MS).” It is often medically unexplained and unfortunately due to lack of funding. I gave up, I wasn’t able to physically get up for my prayers and felt hopeless. I tried to continue to work, I could barely stand and when I walked up and down the stairs I began to drop and that was it.
Some days it would be 22 hours of me being unable to move. The days became weeks, and weeks eventually turned into months. I gave up, I couldn’t see a way out apart from one. Everyone and their TikTok medical degrees were telling me to just be happy, positive, keep pushing, drink turmeric lattes and a bit of yoga should cover it. When I tried all these things, all I did was make myself worse.
After months of dark thoughts, I got to my worst night. I didn’t want to continue what felt like an unbearable life. I took it hour by hour, and when my head hit the pillow I felt a moment of relief. Because for several hours I would not have to deal with my symptoms. My world was ending whilst everyone else was living. When I woke up during what we call a New Year, I learned the meaning of surviving. And I was doing just that, I began to look into ways of alternative living. Over the years I have had to seek medical treatment from different medical practices like somatic therapy, acupuncture, neuropsychotherapy and physio. I found talking therapy was a starting point to me accepting becoming sick. I know I know we are not meant to “talk” about personal stuff. Well it’s too late. Knowing that having a good therapist saved my life and with building coping strategies. I could continue to speak about invisible illnesses as it is now my life but I know how isolated I was and continue to be. There will be people who leave, others who don’t get it and new bonds will be formed. One thing I know is my previous business didn’t always give me joy and fulfillment. I don’t enjoy being sick, nor do I enjoy the painful symptoms. However, I have learned how to be patient (Sabr) and genuinely learn that we won’t always have the things we once but so much emphasis on. I’ll leave you with a few practical tips that may help.
Top tips:
Get a second opinion
Write to your MP
Document symptoms
Join communities/groups who can support you
Don’t be afraid to pick up the phone to Samaritans 116 123
Set boundaries