Trigger warning: suicidal thoughts
We first met Sarah over on Instagram, where we were struck by the powerful messages she gets across through her sign language videos on her ‘Song Sign With Sarah’ Instagram page and YouTube channel.
Diagnosed with Addison’s in 2020, aged 24, in the height of COVID-19, Sarah shares with us how she went from her darkest times to living her dream of performing sign language with singer Jo O'Meara (previously of pop group S Club 7) on stage.
Sarah tells us:
I love trying to raise awareness and promote a better understanding of the condition. I also love advocating positivity and inclusion for people with chronic health conditions.”
Me and my Diagnosis of Addison’s Disease
I’m Sarah. I am a teacher for students with disabilities, training as a UK Makaton tutor, and love performing arts (music, dance and drama). I also have a number of health conditions, including Addison’s disease, Type 1 Diabetes, Asthma and struggle sometimes with my mental health.
I was diagnosed with Addison’s disease in January 2020, just before the first lockdown. I went into an adrenal crisis and ended up in hospital for 9 days, really unwell. That was when I finally got the diagnosis. I have type 1 diabetes (also an autoimmune condition) and, likewise, Addison’s can go with type 1 diabetes. I had an idea there was something wrong leading up to my diagnosis, as I was having a lot more low blood sugars, I was losing my appetite, having issues with my skin and other problems. It was only picked up when I went into full blown adrenal crisis. I was literally exhausted all the time for a long period of time, and was told that I probably just had “chronic fatigue syndrome”. I could sleep for 10 hours and still feel exhausted. Another symptom I had was constantly wanting salty crisps. I didn’t know this was a symptom. When I found out, it all made complete sense.
COVID-19 Pandemic and Mental Health
Because shortly after my diagnosis, lockdown due to the COVID-19 pandemic happened, I didn’t see my endocrinologist consultant much, and I also didn’t know anyone with the condition. I was also put on the shielding list because of my health. I still walked my dog; that was the main thing that helped, but I didn’t really go anywhere. I joined a Facebook group for Addison’s disease, and that was the only time that I started speaking to others. I find that having Addison’s disease, when you tell people, the majority of people have never heard of it, so it takes you as a patient to educate people on the signs and symptoms.
This began to affect my mental health, as although the medications were helping me, it is a lifelong condition, as with my type 1 diabetes and asthma. In July and August 2020, I had multiple suicide attempts. Part of it was from the trauma of the diagnosis and other traumas from over the years. Having chronic health conditions doesn’t help much at all with mental health, as nobody fully understands. I ended up in hospital (mental health) for a number of months for my own safety. Even whilst I was there, I was having to educate staff, as half of them had never heard of Addison’s disease. At the time, I was at my lowest mentally, so it was draining having to educate them about my health.
What Helps Me?
One thing that helps me so much is sign language. I love 'signing' songs. I have qualifications in sign language. Firstly, it’s useful, as if you’re not feeling well, sometimes it’s handy to use when you can’t get your words out. But I think finding something that you love can really help.
I try to focus a lot on my work and try my best not to let my Addison’s and other health/mental health conditions get in the way. As, at the end of the day, they are part of me. I love helping to raise awareness of the condition, as it’s so important that more people know. I have made posters for my workplace (a college), to help people to know the signs and symptoms of Addison’s disease, but also the symptoms and signs of adrenal crisis, as it is a medical emergency.
Walking my dog (Molly - a Labrador/Golden Retriever cross) really helps me too. She isn’t an assistance dog, but she knows when I’m not feeling well and is my rock at times. I love her so much, and she helps me to feel safe. I have actually put my health conditions on one of her dog collar tags, as if she is found on her own, it could be because of an emergency with me. Animals are very therapeutic, and when I was struggling to get my head around the diagnosis, she was so helpful.
Performing sign language also helps me massively. I am close to Jo from S Club 7, and she has been so supportive with my health and the struggles. Last year (August 2020), she asked me to sign “Reach” (for the stars) with her on stage, and I had the confidence to do this. This year, I will be performing sign language to her song “On the Surface” in Pizza Express (London Holborn) on the 11th July 2022. It just proves that, despite having chronic health conditions, you can still shine.
How I Remember to take my Medication and Carry My Injection Kit
I keep my emergency injection kit in my bag and carry it everywhere. I always have a spare in my fridge at home and in a fridge at work.
For my tablets, I have a tablet organiser box, and every Sunday night, I sort out my tablets and what I need each day of the week and when. This helps me to stay organised and remember. It’s important to remember your medication, as having an emergency is not nice and makes you feel so unwell for a number of days.
Always be yourself and never let your health get in the way of you living your life to the full.
Hear more from Sarah on her Instagram and Twitter.
Read more about the topics raised in this article:
Rare Disease Community: Check out Rare Disease UK, Rare Revolution and Cambridge Rare Disease Network.