MS Support Groups – The Good, The Bad and The Ugly

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The Good - Who do you turn to?

Being diagnosed in the middle of the pandemic, I received those life-changing words from a complete stranger – a neurologist I’d never met until that day, with no family to comfort me and leaving the hospital with nothing but a leaflet about MS.

The first thing I did when I left the busy ward and get outside was calling my Mum. I don’t think either of us understood then how life-changing and serious this was – but she was there for me as much as she could be and we planned to work it out together.

After a few weeks of reading MS charity's websites, I decided to turn to the support groups and introduce myself, I found influencers who also had MS who were the same age as me and looked like me. I had a warm welcome into the online community and I was grateful to read other stories similar to mine.

Fast forward nearly 2 years and even now I still struggle with living with MS, it’s something which becomes part of you more than you could ever plan or imagine.

Your family, partner and friends can listen to you as much as you need, but when it gets down to it they don’t understand what living with MS is like. You feel like a burden and a downer constantly complaining about your symptoms, pain and fatigue. Asking them questions you or them can’t understand. You need to speak to someone who knows exactly what you’re going through -and that’s why support groups are so great.

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The Bad – A shoulder to cry on

We’ve all been there, you’ve had a flare-up or a relapse, you’re ugly crying on your own – your partner doesn’t get it, your family doesn’t get it, your friends don’t get it. But your support group gets it!

My favourite thing about MS support groups is you can have a good old rant about what you’re going through and people will always comment saying they are going through the exact same thing. They don’t need to say much else, that one sentence can make you feel better in an instant. You might have never spoken to or met this person but knowing they know how you feel really, really helps!

The smaller the support group, sometimes the better. I have joined larger support groups (within social media platforms) and struggled with the mass amounts of posts and comments. It also sometimes starts a popularity contest – you will always see the same people commenting on every single post, sometimes not very nicely. That’s when the support groups can turn bad and it might be time to leave.

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The Ugly – Trust Issues

If you have been diagnosed with a chronic illness, it’s highly likely that you’ve had the struggle to get there and you have had to deal with several doctors first. I know when I was looking for an answer I spent 5 days in the hospital with a ‘mystery’ infection – believe it or not these were the doctor's words not mine. I was told I was depressed, obese, I needed to do more exercise or it was just my period until I was finally referred to a neurologist by my GP.

This leaves you with a very strange relationship with healthcare professionals, it means sometimes you want to get an opinion from someone else or see what other people’s doctors have told them. This is when support groups can be dangerous. I’ve learnt a lesson not to use support groups for things like this.

All support groups have a disclaimer that they cannot offer medical advice, of course! But one day I was having issues with my MS team, my neurologist suggested I should have another MRI which was then forgotten about and my MS nurse said it wasn’t needed. I had read a lot of posts about MRIs in several support groups and decided to ask the question. But the answers and amount of comments ended up upsetting me.

So many people started commenting saying my MS team are wrong, questioning why I haven’t had more MRIs, and saying that they’ve had several more than me. I felt really let down by my MS team but the ‘support’ I was receiving felt quite hostile and made me think negatively. I quickly deleted the post, before it upset me even more or anyone else and made the decision to listen to what my own medical team were telling me and live by my own experience – after all who wants to have another MRI!

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Live your own experience 

What I have learnt from my very short time navigating through the world of MS is that support groups are great for having a moan and looking for a friend going through the same thing – but avoid asking for too much advice, everyone is different. Listen to your own body and take little wins when it’s a harder day. Remember social media is curated, it’s not 100% real. And if you need to, take a break!