Sarah’s Story: Living with Addison’s & my Journey So Far 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 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 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 couldn’t not walk 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 educating 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 to not 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 about my health conditions on one of her dog collar tags, as if she was to be 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 diagnose, 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. Here’s the video link to me signing “On the Surface” by Jo O'Meara 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 in 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 times. 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 from living your life to the full. Author: Sarah Mather aka Song Sign with Sarah Hear more from Sarah on her Instagram, Twitter and Website Resources to support you: Ask your healthcare team to be referred for professional emotional support. It’s always going to be a hard thing to do, but asking for help and talking about your problems with someone can be really helpful. Your healthcare team can refer you to lots of places so that you can get the right support for you. Contact other charities such as Mind, Rethink and Rareminds Connect with the rare diseases community. Check out Rare Disease UK, Rare Revolution and Cambridge Rare Disease Network. Some people find it helpful to speak to someone who understands what it is like to live with Addison’s and adrenal insufficiency. Our online community is a welcoming place for everyone affected by Addison’s and adrenal insufficiency to ask questions, read about people’s experiences and support each other. Find out more. Visit our 'Reducing the Stress of a Long Term Condition' page. Having a chronic health condition can be exhausting and overwhelming, so we discuss balance life, emotional health and Addison's and adrenal insufficiency. Visit our young persons page, for more information and resources relevant to your age group. Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! Join the ADSHG Say hello! Follow us on Twitter, Facebook, Instagram, LinkedIn and YouTube.