My mental health journey

When I got my diagnosis of MS confirmed back in 2018, I’d already had a few months to process the fact it could be MS. So I guess there was a bit of relief when I found out, but I also had lots of questions and worry. With any diagnosis of a life long, chronic condition, it is going to hit you hard, and after a while it really did - hit me hard.

Like I said, when I first got the diagnosis I was surprisingly ok for a while - at least I thought I was. But in reality, I think I was definitely in denial for quite some time. I didn’t care about many things, I lost motivation, I wanted to go out all the time and ‘live my life’, and looking back I think a lot of my behavior was pretty self-destructive. I got to a pretty low point and I decided to go on antidepressants. But, honestly they just made me feel numb, and I hated that.

After a period of feeling quite low and lost, I slowly started to make myself a priority again. And the past few years I’ve really started to put my needs first and look after myself and my body as much as possible. And now I’m in a really good place with everything. But, it definitely took me a while.

I think for me, in the beginning, the main things that affected me were:

• Dealing with the actual diagnosis

• Telling people about my diagnosis and dealing with their reactions

• Processing what MS might mean for my future

• Choosing my MS treatment and the whole process around this

• Starting my MS treatment

It’s one thing being diagnosed with a condition, but it’s another thing learning to live with that condition and all that comes with it. And I actually think, looking back, that I found starting my MS treatment one of the hardest parts. I think that’s because it all suddenly felt very real and the treatment I chose initially was a tablet to be taken twice daily. For me, this definitely wasn’t good for me mentally as it felt like a daily (or twice daily) reminder of the fact I had MS.

Something which I also didn’t know when I was diagnosed was how common it is for people with MS to experience mental health issues. And there’s a variety of factors that can contribute to them such as:

MS-related nerve damage 
The brain controls both conscious and unconscious actions by sending messages to all parts of the body. Different parts of the brain control different things, and the frontal lobe is responsible for the control of emotions and their outward expression. Regardless of your personality, nerve damage in this region of the brain can affect the way you feel or react, and can cause you to behave in a way that seems out of character.

Psychological reaction to MS 
Being diagnosed with MS, coping with, and adapting to the changes and uncertainty it brings, can be very unsettling. It may lead to a whole array of emotions such as grief, anxiety, guilt, fear, irritation and anger. There is no right or wrong way to react, and reactions to the condition will vary greatly from person to person. Your own reaction will be influenced by how MS affects you, the symptoms you are experiencing and how you usually cope with what life throws at you.

I was not pre-warned about potential mental health issues when I got diagnosed but I soon found out how normal it was to feel how I did.

With my MS, I have constant worries leading to constant anxiety. One day I woke up with a strange sensation in my arm and as soon as this happened I started to panic, thinking the worst. So many questions go through my mind when things like this happen – Am I going to have a relapse? What if this symptom never goes away? What will this mean for me? And you’d think with time it would get better, and you’d have less of these thoughts, but it doesn’t. And that’s why conditions like MS are so hard to deal with - because it’s not only the physical symptoms you have to deal with, it’s very much the mental ones too. And that’s why again, we need to remember that everyone has their own story and we should not judge them before we know it.

Coping with and accepting my diagnosis has been a big part of my journey so far and I still have a long way to go. But learning to find and appreciate my new normal was one of my methods which has helped enormously. If anyone is struggling with a new diagnosis or any sort or invisible, chronic or long term illness, or even if you are just having a bad day, please get in touch.

Thanks for reading!

Bye for now,
Amy x