What no one else sees
The invisible side of living with MS
Most days, Astrid juggles her busy life as a writer, teacher and podcaster. On top of a full-time career, she is a newlywed, a business owner and a National Advocate for MS Australia. Astrid lives with a chronic illness and experiences a range of invisible symptoms on a daily basis.
“I was 32 years old when I was diagnosed with relapsing-remitting Multiple Sclerosis. I was really ill in the months leading up to my diagnosis, and doctors always brushed off my symptoms as “depression” or “you’re working too hard”. At the time, I was working 70 hours a week, so the GP’s initial diagnosis seemed somewhat truthful to me. But then one morning I violently woke and it felt like my feet were on fire. The feeling spread, and by the time it got to my abdomen, I knew something was seriously wrong. I walked myself to Emergency, and after a series of rather uncomfortable tests, an MRI revealed I had Multiple Sclerosis. It was a relatively fast diagnosis.”
Multiple sclerosis (MS) is a disease of the central nervous system, which includes the brain, spinal cord, and optic nerves. It is usually thought of as a single disease, but its course and symptoms vary from person to person. Many of the symptoms people with MS experience are completely invisible to the eyes of others.
“A lot has changed since my diagnosis, although no one else can see it. I live with invisible MS symptoms - numbness, pins and needles, sensations of burning and tingling, Lhermittes sign (uncomfortable 'electrical' sensation that runs through my back and limbs), vertigo, problems with balance and coordination, and feelings of weakness and spasticity. I’ve fainted a few times. I also feel fatigued every day, and if I am in or recovering from an MS relapse, the fatigue – and cognitive disfunction that goes with it - can be severe. I catch planes a lot and I once actually forgot how to catch a plane and missed my flight. Even though it’s highly embarrassing, I tell this story because cognitive disfunction can be that quick and severe. It has never lasted more than an hour or two so far, but one day it might.”
“I experience neuropathic pain, which makes it very difficult to concentrate. I can be out with friends, in a meeting, or just living my life - but no one can tell I’m actually in a lot of pain. I can also have problems with my proprioception (my ability to tell where things are in space) and it’s too dangerous for me to be out on the street. I've walked headfirst into the closing doors of lifts, as well as strangers on the street.
If I’m feeling well (which these days is quite often) I still wear heels. It sounds vain, but I like wearing heels - it makes me feel like myself. It is also a personal challenge I have set myself, to retain my ability to wear them. And when I can’t, well, that lets me know how skewed my sense of balance is on any particular day.”
“I deal with having invisible symptoms by being comfortable enough to say them out loud and talk about it. I’ve learned that anything can happen, so I may as well be prepared and ready. MS is a hard disease to live with, but by making adaptations to my daily life, it’s totally viable to have a full-time career, loving relationships and a social life.
We live in a time where we do have treatment options and help available, and as patients, I think we should take an active interest in our own care and responsibility for our health.”