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Shout it from the roof tops: Why it’s important to talk about MS

Reading time | 4 min

You have just received your diagnosis. You are scared of how your life will change and how multiple sclerosis will affect your relationships with not only your spouse, kids and close family, but the many relationships beyond that.

If you are worried about how to deal with this new reality when it comes to friends, acquaintances and people at work, you are not alone. It can be hugely daunting and our first instinct is often to keep soldiering on and try to appear as ‘normal’ as possible on the outside.

I suppose, we’re all reluctant to appear vulnerable, especially in our work life. All too often in society we are considered as doing well if we are strong. We are told to work hard professionally and play hard socially. We are taught to put maximum effort into everything and that appearing weak is not an option. No pain no gain. If you’re tired, you just need to push harder. Mind over matter. The list goes on.

Well, to hell with that!

What I have learned being two years into my journey with MS, is that you cannot simply push MS aside and ignore it. Trust me, I have tried! The harder I pushed the more I struggled, the more I rushed, the slower I became. And the more you hide, the lonelier your life becomes.

I very much wear my heart on my sleeve so it was a complete no-brainer for me to be very open with everyone. It wasn’t always easy – at times I felt weak and exposed. What I came to realise, however, is that people did not regard me as weak. In fact, it is quite the opposite really. Let me tell you why.

Building a circle of support

At first, many of my friends were not familiar with the symptoms, struggles and challenges of daily life with MS. Yet what have I found was that most of them are nothing but supportive and that they actually admire my bravery! They understand why I might be limping or swaying like a drunk person on the school run, and on days like that they have my back. There is no judgement.

In fact, when I opened up about my struggles, many friends began to open up about their own. I have learnt that truly everyone fights their own silent, invisible battle. I feel it is my responsibility to be open about MS and to raise awareness and increase understanding among those who are not affected by the disease.

Opening up is cathartic

Talking about the reality of living with a chronic illness is so cathartic to me. Friends and family often have questions about MS and I answer them as openly as possible. Talking about it helps me process. How often have you worried about something and blown it out of all proportion in your mind, only for it to seem completely small and ridiculous when you eventually say it out loud?

Talking about difficult things helps us to process them and this applies to everything in life, from witnessing something difficult to receiving a shocking diagnosis.

To feel understood, help others understand

Talking openly about MS helps those around you feel more at ease to have this conversation with you. You will inevitably have come across someone who simply does not know what to say to you after finding out you have MS. We’ve all been there.

People sometimes say misguided stuff. Everything from “I’m sure you’ll get better if you follow XYZ diet and stand on your head once a day” to “My friend has MS and still goes to work every day” to the all-time classic “But you don’t look sick!” Almost everyone with a chronic illness has heard a variation of this.

The truth is people get flustered. They are unable to relate and often don’t properly think through what they say to you. But you can help them. By openly talking about MS you can help them understand; about how there currently is no cure, about how every patient has a very different prognosis, about how debilitating some symptoms can be. This enables folk around you to feel safe about being curious about your condition. By opening up the conversation, you enable a two-way communication: you get to express what’s really going on underneath it all, and others around you learn to understand your reality.

The takeaway

Not everybody is ready to share their journey as openly as I did and that’s totally fine. However, I would like you to consider it because the benefits are plenty. Being open has helped me find support in what I thought were the unlikeliest of places. Remember, people who love you, want to help – always. Give them the chance to understand and get it right. You won’t regret it.

UK/MED/18/0334 December 2018