Finding Support in an Online Community

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by Jessie Ace |

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Finding an understanding community makes such a difference to people diagnosed with multiple sclerosis (MS). 

Our partners, families, children, and friends do their best to listen and empathize, but at the end of the day, they can only empathize so much. Unless they have an illness themselves, it is very hard for family or friends to even begin to understand what goes on in our brains and bodies. 

The truth is that MS is an unpredictable and often uncontrollable disease. It does what it wants when it wants, often with no warning.

We experience hundreds of different feelings that are hard to explain, even to people who have MS — never mind healthy people. This is especially true if you have lesions on your amygdala, the part of the brain that is responsible for controlling emotion. 

We live every day not knowing what to expect from one minute to the next. How are we supposed to live as normally as we once did? 

In addition to conducting a lot of trial and error to find helpful treatments or therapies, connecting with people who understand and can make suggestions is important for our health. 

You may be worried about the future. You may need to vent after a sucky appointment. Perhaps you are suffering from new side effects or are worried about switching medications, and you want to see if others have felt the same. You can find support in an online community.

Dealing with judgment from people who don’t understand our condition doesn’t help and can affect our mental health. Sometimes, we need to feel like we’re not alone. Handling a chronic illness is super hard work. It’s a 24/7/365 job we don’t get paid for, and it comes with a really sucky boss. 

However, be aware: Connecting with people via online groups can have downsides. 

Don’t get me wrong, it’s a great way to find people, but it requires a word of warning. I’ve seen a lot of negativity in Facebook groups, which is why I set up a positive group. Negativity can severely damage your mental health if you spend too much time in that space. It can cause a tremendous amount of stress. As you probably know, stress affects our symptoms and makes us feel worse. 

Before joining an online community, check the group rules for negativity policies. You could also ask the admins how they deal with negativity. Your other option, of course, is to join groups and experience them for yourself. 

There are also several forums and chatrooms that allow you to ask questions and get answers from the community. These are generally not regulated, so people may share false or misinterpreted information. Be careful. Always double-check any facts or ask for the person’s source. 

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Charles Lumia avatar

Charles Lumia

It's definitely tough. The first person I talked with after being diagnosed was severely depressed. The second was pretty much unable to walk. I was like...

I have met some pretty cool people though. Just gotta keep your head up and keep looking!

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