Sarah was diagnosed with Graves disease in 2007 after spending many nights feeling as though my brain were on fire and my heart wanted to escape from my chest. I was in turmoil. The doctors always mentioned depression or stress when I presented with a lack of sleep or anxiety but I knew something was afoot. I had lost weight; I did that on purpose but still I was the slimmest I had ever been. I even enjoyed the attention I got from being smaller even though I couldn’t stop eating. Everyone around kept asking how I remained so slim when I ate everything in sight. I wasn’t sure but didn’t let it bother me until I found myself rolling around my bedroom floor in a manic state, sweating profusely and unable to sleep unsure of what was happening to me. I was shaking and feeling out of control.

I had never heard of Graves disease before and the endocrinologist explained that they weren’t sure what caused it but that there was no cure. She asked me about my family history but I didn’t know and there seemed to be little information available or any support. I was put on carbimazole and told to let them know if I had a sore throat. She also explained that while the carbimazole would ease the symptoms I would eventually have to have the thyroid removed or have radioiodine therapy. After a while the symptoms abated and I felt sure I would be ok but they came back full force and I opted for the radioiodine rather than surgery. The day came and went. I took a few days off before returning to work.

For a year everything was fine. I was back to my ‘old self’ and then one day I wasn’t. I went to the doctor as I was again not sleeping, feeling low and anxious and was told that I was now hypo would have to start thyroxine for the rest of my life. In fact the doctor joked that at least it meant I would get free prescriptions for life. This wasn’t a joke to me at all. Prior to my diagnosis I had not been someone who visited the doctors that often so to know that I would have to have regular check ups, blood tests and prescription checks was less than amusing. I know there are people with far worse diagnosis but to me this was depressing in itself. I didn’t feel relieved or excited especially as no one seem to know how to support me. I felt quite alone.

Recently I have been having issues with my thyroxine in that my body cannot decide which dose it wants and so there’s been endless blood tests and symptoms. The low moods, anxiety, eating, weight gain, dry hair, lack of hair growth, you name it, I’ve presented with it. What I find really upsetting and a little unusual, wasteful even, is that the doctors deal with every symptom as an isolated thing. Nothing is ever related back to the thyroid. It’s either in my head or I must be stressed. “What’s happening in your home life, are you happy at work, maybe try fasting.” Some doctors are more sympathetic than others but I always leave there feeling misunderstood and unheard.

Most days I feel like a shadow of my former self. Information is more widely available and support groups are popping up here and there which is helpful. Everyone reacts differently to their diagnosis and most people try to carry on as normal as is the case with my sister in law. I think it makes my husband think that I’m exaggerating my symptoms because his sister just ‘gets on with it’. I feel like a complainer. “You only work part time, why are you tired.” Only adds to the stress I feel as I am trying to normalise my existence and live with the disease. Not being able to sleep is a problem because over time you start to get the jitters and unable to do anything. It feels like a wave of fatigue, like a magnet weighing you downwards. I can never fully explain it so I don’t bother trying anymore.

I am persevering to ‘get on with it’ but in my own way and not how people want me to be as that only increases the anxiety. I don’t want to be defined by the disease but I don’t want to push it under the rug either. A balance is needed stay on top of things. I have started to look at forums a groups, which I hope will support me in my journey. Knowing there are others out there with similar symptoms, takes a load off my mind. It is not just in my head. One day at a time.