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MS and Mental Health

@lucyg
MS and Mental Health

“People diagnosed with MS are 2 to 5 times more likely to develop mental health issues than the general population.” 

When I read this figure, all I thought was... “No bloody wonder”. This might seem like a shocking statistic, but many MSers endure a long, difficult journey to diagnosis. Wide-ranging symptoms and varying degrees of severity, and the fact that there is no single definitive test to confirm MS, make it common for patients to be left without answers to various vague, often frightening symptoms for months or even years. Conversely, there are also those of us who have been “lucky” enough to be diagnosed very quickly – which in itself, is pretty terrifying. 

So, whilst there may be many who are finally relieved to be diagnosed following years of strange symptoms and no answers, a diagnosis really is just the beginning. For me, the overwhelming sensation was loneliness, alongside the general rug-pulled-out-from-under-you feeling. I felt like the future I had pictured for myself had been ripped away in a split second, and there was absolutely nothing I could do about it. My diagnosis journey was just a little over 3 weeks. During this time, I flicked from the assumption that I had “burnt out” from overworking (desperately trying to finish writing my PhD thesis, plus preparing to interview for a new job) – to thinking I had a viral ear infection (loss of balance and co-ordination) – to a suspected TIA/mini-stroke (lack of co-ordination and loss of strength down my left-hand side) – to a confirmed diagnosis (over the phone – thanks COVID) of Relapsing-Remitting Multiple Sclerosis (RRMS). During this time, my personal life was also falling apart; my marriage was in pieces and I had next to no social life, largely thanks to the aforementioned PhD-in-progress. Throw in a global pandemic for good measure – a mental health nightmare. And perhaps one of the most difficult things that modern life leaves us to contend with, thanks to the age of social media, is our tendency to compare our lives to others’; something which plunged me further into despair as I watched “normal” people pull together and embrace lockdown, spending time outside and at home with their families, all whilst I was desperately trying to grab a now-wobbly foothold in this new, scary world with MS. 

Like most, I have struggled with my own mental health on and off throughout my life and whilst I do think there is some value in having a good old wallow when bad news hits, I’m also a huge believer in focusing our thinking and our energy on the things that we can control. Since being diagnosed, I choose to focus on keeping myself fit and healthy – something I can control. I prioritise my physical and mental health and wellbeing above everything else. Life, with or without a chronic, incurable illness, can be scary, at times stressful, and always uncertain. The one thing that we can control, however, is how we handle the things that are thrown at us; and whether we are fit, healthy, or unwell – our lives are still our own domain, and sometimes holding onto this is the only way to maintain our balance. We always have a say in how we choose to approach things, and when it comes to MS I have chosen to focus on the positive impact it has had on my life. 

Perhaps I have not yet earned the right to say all of this, as my own personal experience with MS is still in its infancy with me being diagnosed just a little under 18 months ago. But the ups and downs of the past year and a half have recently caught up with me. Complications with treatment, a lack of professional support (I hear more good things than bad things about MS nurses and neurology teams, but unfortunately my experience has not been a good one) and a general feeling of still finding my feet have pulled me into a very dark place in recent weeks. Despite this, I do still genuinely feel that I can draw more positives from this huge life “plot twist” than I can negatives. I would even go so far as to say that I am now almost grateful to have MS, for the many lessons I have learnt, that I know I wouldn’t have been able to fully comprehend otherwise. I’ll prove it. Here is a list of all of the things that I whole-heartedly believe MS has given me:

  1. The strength to walk away from a toxic marriage. Something I had previously refused to accept, thinking that by admitting it was over I had somehow failed. MS somehow made everything clearer for me – life is too damn short to be miserable. And far, far too short to let someone else make you miserable.
  2. The perspective to enable me to achieve a healthy work-life balance. Work is not everything. As a lifelong over-achiever I can’t stress enough how important this lesson has been for me. I was well and truly hooked to the narrative that my self-worth was directly linked to how productive and successful I was. Now, I pace myself and work hard when I can, and pull back when I can’t. And you know what? Nothing terrible has happened! I’ve kept my job and I’m still good at what I do – I just feel a whole lot happier about it!
  3. The compassion to let people be. I like to think I was already a compassionate person. But my God, suddenly understanding how it feels to have an invisible illness, to know that on the outside you look entirely normal when in fact on the inside you are struggling with something pretty mundane e.g. forming a coherent sentence – this is humbling/grounding. You never know what another person is going through, even when they look like they have their shit together. 
  4. Gratitude. Don’t get me wrong – MS is shit. Sometimes, it’s really shit. And whilst it can steal our certainty, our previously planned futures, our balance, our co-ordination, our mobility... it also makes us appreciate the things we have so much more. I am genuinely so grateful for the things I still have. I can walk, sometimes even run, I can drive, I can read, write, sing (badly), dance (abysmally), laugh, cry. And there’s nothing like going through a crappy time to make you realise who the good people are in your life. 
  5. The patience to allow myself to rest when needed. Modern life can often feel like it’s moving at a million miles per hour – exhausting. Rest when you need to rest!

I’m by no means saying this is a fail-safe way to manage our mental health, especially when the curveballs just keep coming, but reminding myself of all of these points when things get difficult has certainly pulled me out of plenty of bleak times. How I respond to what life throws at me, MS related or otherwise, is completely my call – and nothing can change that.

About the author

@lucyg

Diagnosed with RRMS at the start of the pandemic in April 2020. I live in Hampshire, UK with my dog, Dylan. I have a PhD in Veterinary microbiology and I currently work as a research scientist. Still finding my feet (sometimes literally) living with MS, but I love keeping fit and enjoy running, yoga, horse riding and Muay Thai boxing. Music is my therapy; I always have a playlist on the go for every mood...

Instagram: @lucyg_247

Twitter: @LucyG247