The story of Jo
My Addison’s Disease diagnosis was a long time in coming. I spent the majority of my teenage years unwell, but things really came to a head when I was sixteen. During the summer between my GCSEs and my A Levels, I lost a lot of weight very quickly and my skin became very tanned. I thought nothing of it at the time. I had been on holiday with my family that summer and was in fact pleased to have come home with the best summer glow! Little did I know, this was the start of a very rapid decline in my health.
Sixth form was a struggle. I was constantly exhausted, cold, frequently dizzy, nauseous and often with severe stomach pain. My skin became more and more orange, with patches appearing on my forehead and arms, and the continuing weight loss left me very weak. I spent a lot of time at the doctors but despite numerous tests and appointments, I received no diagnosis. I believed that surely nothing must be wrong, that feeling this terrible must be a normal part of puberty and something I would have to get on with.
As with many Addison’s patients, my eventual diagnosis came when my condition reached a crisis point. Long after trying to get GPs to listen to my symptoms, we managed to convince them to do a blood test. Within twelve hours of the test being done, I was rushed into hospital with dangerously high potassium and low sodium. I was told in the hospital that my levels were such that my body should no longer have been functioning. It was then, at the age of eighteen, that I was told I that had Addison’s Disease. I was treated for the imbalances in my body and given a treatment plan to go home with. I was taught how to manage my condition and assured that I would be able to live a normal life.
“Addison’s is a rare endocrine condition where the adrenal glands do not produce enough steroid hormones and can be life threatening. It affects approximately 1 in 10,000 people, meaning an estimated 300 – 350 new cases are diagnosed each year across the UK, this makes it roughly 300 times rarer than diabetes.” (Addison’s Disease Self Help Group)
Being diagnosed with a rare, incurable disease at eighteen was extremely difficult. Your teenage years are meant to be enjoyed but mine were spent recovering. Emotionally, the diagnosis was very challenging. Whilst it was a relief to finally have an answer, it was hard to accept that Addison’s is something that I will live with the rest of my life. With Addison’s Disease, there is a chance that you can develop subsequent autoimmune disorders. At twenty, I was diagnosed with LADA diabetes, which is another condition I must manage for life.
I am now twenty-two and have been living with rare diseases for four years. Whilst the promise of a ‘normal’ life certainly hasn’t come true, I haven’t let my conditions hold me back. Despite being so unwell, I made it through my A Levels and I am now in my final year at university. I found it very hard to accept my diagnoses and as a result, I have often kept my conditions hidden from those outside close family and friends. But now I feel ready to speak about my experiences as a young person with rare, chronic illnesses. Whilst life with rare disease certainly isn’t easy, it is nothing to be ashamed of and if anything has taught me my own strength.