How to communicate with others

Everyday living
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Hi again everyone :growing_heart:

I just wanted to ask a question and see if anyone else feels the same or have any tips.

When you were diagnosed, did you ever feel like you had to be strong for everyone else? Like you were reassuring people around you instead of being able to focus on yourself?

Being in “survival mode” for a while, trying to show that I’m okay and strong, not just for me but for others too. But lately I’ve realised that’s not ok.

What’s been getting to me is that sometimes the people closest to me don’t really check in. For example, I recently had to take a couple of sick days because I was burnt out with work and everything else going on, including MS, and no one really asked how I was doing.

I don’t know if it’s because MS isn’t always visible, or if people just don’t realise, or maybe they avoid the topic. But it’s starting to frustrate me a bit and I want to act on it.

I’ve recently started opening up more to my friends and telling them honestly when I’m not okay. I’ve also tried to gently tell my parents that I’d like them to check in with me sometimes. I know it can be a generational thing too.

I’m trying to be more honest about how I feel, in a calm and kind way, because keeping everything inside doesn’t help me.

I guess I’m just wondering if anyone else experienced this and how do you deal with people not checking in or understanding? Do you have any advice on how to communicate this?

Thank you for reading and answering my messages, means a lot.

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I can totally understand when you said about making sure everyone else was OK when you were first diagnosed. Looking back I think I was also trying to convince muself that there was nothing much wrong, which in the early days there wasn’t. Also not wanting people round me to see me as some sort of needy burden they had to look after. I just wanted everyone to carry on as normal.

A lot of us when first diagnosed have few if any visible symptoms and if there is nothing to see, people soon forget and get on with their own busy lives. And also of course MS is such a tricky thing to understand if you haven’t got it!

Your parents may be a different matter though, a gentle nudge to remind them you need a bit of TLC occasionally!

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Oh crumbs yes, the managing people’s reactions thing. I remember having an ironic smile about the fact that helping others to deal with the news can help take one’s mind off one’s troubles! In a way I found that strangely therapeutic. It’s new territory for everyone - the person with the dx and those around them. I don’t have any thoughts really - it’s all a it of a blur looking back. But I think it’s fair to say that it’s a difficult time for most of us.

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