How can I come to terms with MS diagnosis?
Q: After three years of what seemed like endless GP visits, consultant appointments and tests, I have been diagnosed with multiple sclerosis (MS). The neurologist I spoke to was sympathetic and helpful, but to be honest, I only listened to a fraction of what she said after telling me I had MS. I came away with a wedge of papers about what happens next, but I can’t bring myself to look at them.
I am terrified of what I will learn about what is going to happen. I also feel anxious and depressed all the time. Feeling confused by it all, I spoke to one of the GPs at my local practice recently and explained that I wasn’t handling it well. However, he seemed more interested in talking about what might happen with MS than helping me come to terms with it emotionally. We also didn’t get much time to talk about possible treatments. I am sure he felt that I was wasting his time when I told him I hadn’t read the information pack I had at home. Which is probably why I ended up getting a bit shirty with him.
Anyway, I am now feeling worse than before and even coping with simple things around my flat seems too much for me. What am I supposed to do? I can’t go on like this, I’m such a failure.
A: Fear, anxiety and sometimes anger are natural responses to getting a diagnosis like this, so please don’t feel that you are in any way a failure. However, you’re right – you can’t go on like this.
You need to start making informed decisions about what care or support you feel you might need, and plan for any adjustments you may need. I know it’s daunting, but can it really be any worse than coping with constant fear and anxiety about the unknown, as you are now? MS is a complex neurological disease that affects different people in different ways, and many go on to have full and active lives by managing their condition.
But having clear and accurate information will make a difference, so please make a start by reading the pack you have. This will answer many of the questions you might have, but I suspect you will have more, so please also contact the Multiple Sclerosis Trust (mstrust.org.uk).
The charity runs a free helpline where you can get practical information and support. There is also an interactive video experience where many of the most common questions are answered. The website also has details of local support groups, online blogs and groups, as well as details of how to access specialist MS nurses.
Until some of this help kicks in, do you have a friend or relative who could give you a bit of help at home? Finally, please don’t give up on your GP – he will know that recently diagnosed patients can be emotional and confused. However, once you know more about your condition, you’ll be better able to ask the key questions when next you see him.