Dealing with a Diagnosis

Getting diagnosed with an illness or disorder, whether mental or physical, can be really difficult to deal with. You wonder how it's going to affect your life, you wonder how it's going to affect your family and you ask 'why me?' I know how this feels. I've been through it.

In 2020 (as if that year wasn't bad enough already…) I was diagnosed with myotonic dystrophy. According to the NHS, myotonic dystrophy is defined as “a progressive condition, which means it gets worse over time. It often begins by affecting a particular group of muscles, before affecting the muscles more widely.” Myotonic dystrophy is one type of muscular dystrophy or MD which could affect the heart or the muscles used for breathing. My myotonic dystrophy is genetic, meaning that I was diagnosed with it due to my father having it and passing that gene mutation on to me. Since then, I have had to go through a multitude of blood tests, heart tracings, lung function tests, strength tests, and pretty much every other taste you can name under the sun.

My diagnosis was really difficult for me because it meant that I had to really think about my future, in particular my future family. I have always wanted to be a mum and my diagnosis means that it won't be as straightforward for me as just trying for a baby. I will have to have tests on my eggs, may have to go through multiple cycles of IVF, will have to have risk assessments and tests throughout my pregnancy, and am at a higher risk of a stillbirth or cot death. This was devastating for me to learn. I didn't care about the muscle wasting part of MD - I only cared about the genetic childbearing part. There was and still is nothing I can do about my diagnosis. It's a matter of playing with the cards I've been dealt and rolling with the punches. The following things are some things that helped me to cope with my MD diagnosis.

Do your research

One of the first things to do is research your condition. Find out how the diagnosis will affect your body and your daily life and what you need to do next. Look into whether there is anything that can ease your symptoms or delay the worsening of your condition - educate yourself. For example, when I was looking into myotonic dystrophy, there was information that said that gentle regular exercise could be beneficial in maintaining strength and muscle mass, although it may not have any long-term effects and won't cure the disease. So I am making sure to exercise somewhat at least once a day which I wouldn't necessarily have done had I not looked into it.

Turn to your support system

The people around you are really important when dealing with a difficult diagnosis. They are there to support you, to help you, and to make you feel less alone. I know it's very easy to try and hold it all in and deal with it all yourself, but that isn't healthy. You can only hold in so much before you burst. Talk to the people around you whether it's your friends or your family or even a teacher at school or college. You need them at this time and they are here for you.

Take your time

There is no pressure or time limit on how quickly you need to deal with this. For me, I took half the day off of work and then got back to work the next day as though nothing had happened. However, for my dad, he took three days off work and then took the weekend as a few extra processing days. It is different for everyone. If you are really struggling and it is taking you days or even weeks to get your head around your diagnosis, that is totally okay. You are allowed that time. This time is yours.

Live life as normal

I know this sounds like a strange thing to say when you've just found out something that will change your life forever. However, it is important to not let your diagnosis change your life too much. Don't let it stop you doing things you love if it is safe for you to continue. For example, I love acting and singing. My MD doesn't affect my ability to act or sing so I will continue to do it as normal because I love it. Your diagnosis is not all you are, but a part of you. While you may have to adapt your life to suit your diagnosis in some areas, try and continue as normal where possible. Don't let your diagnosis take over; get out there and live.

Join a support group/message board

The important thing to remember is that you are not alone in this. You are not the only person in the world going through this. About 9,500 people in the UK have myotonic dystrophy, so that is 9,500 people who are experiencing similar things to me.

This is why support groups and message boards are amazing. They are places you can go which are free of judgement, free of stigma, free of shame. They allow you to talk to others who have been where you are and you can get advice, support, guidance, and reassurance from people just like you. It allows you to form a connection with others like you and it helps you feel less alone.