Emily’s Autoimmune Story

MEET EMILY

I’m a 19 year old girl from Queensland, Australia. Currently studying Speech Pathology part time. Both myself and my parents have/had autoimmune diseases (Dad has chronic nerve damage from Guillian Barré Syndrome and Mum has Celiac Disease), and my fiancé’s mum has both Lupus (SLE) and Myasthenia Gravis… so my family is full of autoimmunity!

 DIAGNOSIS

I have a rare autoimmune disease called Adult Onset Still’s Disease. I got sick about 4 months before my 17th birthday… so I’m still fairly new to the game. Still’s is often described as if RA and SLE had a baby. I’ve got the arthritic joint degradation and pain of RA with the systematic implications of SLE. I have joint pain, fevers, rashes, kidney problems, respiratory problems, heart problems and GI problems… plus neuropathy and periodic paraplegia which the doctors think is linked to my Still’s.

It’s all still a bit mysterious, as until fairly recently, all I knew was that I had autoimmune arthritis and some complications. I was super lucky to get answers so quickly, and very relieved. I’m currently on 15 different medications, including methotrexate.

I own a few canes (that I use everyday) and a walker that I use on especially bad days. Being only 19, I get a lot of weird looks and rude remarks… especially when I’m picking up some of my meds at the chemist.

 LIFE CHANGE

Being a teen, my disease has had lots of effects on my life… but perhaps the most difficult has been the social aspects. When I was in high school, I spent very little time with my friends, even at school! Everything I did was restricted because I was just so tired and immobile.

In less than 2 years, I went from having some of the highest grades in my cohort, volunteering and mentoring, representing my school in netball and cycling, and working as a cashier on the side… to barely able to attend a single class, and spending all of my time out of school either at the hospital or asleep. Especially as an active teen, it was a really hard blow!

 HEALING

Obviously, my medications have been the biggest help… but in the past 6 months, I’ve been trying to incorporate more natural symptom alleviation methods. I do daily physio, take supplements (magnesium and B12 especially!), follow a vegetarian diet (shifting to dairy free too), and use things like TENS therapy for pain.

 STRUGGLE

I still struggle in a lot of areas. Autoimmune disease is a tough gig, and can have some major mental implications. I’m still really struggling with learning to cope with the uncertainty of chronic illness. The fluctuations, in particular. You can never really tell when a flare is coming, and that’s actually really scary.

INSPIRATION

It’s simple, but that’s part of what makes it so beautiful. Stripping life back to personal growth and saying, “yeah, the going is tough… but I’m still growing amongst all of this”. Especially as a young person struggling with AI disease, I often feel left behind by my peers. They all seem to be doing so much with their lives and I often feel like I’m losing the race. This quote reminds me that I’m not behind, because we’re all running a different race. Even in the madness of what I’m feeling right now, I’m still growing as a person! And that’s something that I ought to be proud of.

Find Emily | @growth.with.illness