Social Media ‘Support’ Groups

I feel extremely lucky that, after years of doing stressful work that I really didn’t enjoy, and which was probably instrumental to me being diagnosed with M.E. years ago, I now do work that I actually love getting out of bed for.

That’s because I have a passion for it! Can you say that about your work? Not many people in this world can.

It was my experiences throughout my life that has led to me doing this work.

After being widowed at a young age, my health deteriorated to a stage that I was eventually diagnosed with M.E./Chronic Fatigue Syndrome. However, with absolutely no help from the medical profession and no over the counter or prescribed medications, I recovered completely and haven’t had a relapse in over 10 years.

In a nutshell, I spent 4 years researching, learning, growing, taking massive action, paying a fortune for different supplements and treatments, and ultimately healing my body and my mind. More importantly, I took responsibility for my own life and my own health.

I simply wasn’t going to accept what the consultant told me, that there was no cure and that I’d have to manage the symptoms of the condition.

I didn’t resort to medication, which although may have relieved some symptoms would no doubt have caused more problems for my exhausted body. And I didn’t waste my time or energy fighting for, or waiting for, a ‘cure’ from the medical profession.

This is why I do what I do!

The reason I chose to do the work I do, namely supporting those who are suffering the effects of Burnout, or who have been diagnosed with Chronic Fatigue Syndrome, so that they can make a recovery, is because I feel there isn’t enough hope out there for sufferers.

I want to demonstrate that there is a light at the end of the tunnel and that with the right care and attention they can recover, or at least significantly improve their health.

Often when sufferers are diagnosed, usually after years of suffering, they’re told that there is no cure and all they can do is learn to manage the symptoms, and basically live with it!

It’s no wonder people give up before they even start trying to get better.

Add to that the ‘support’ groups on social media and, well basically, they have no hope.

I’m a member of many groups on social media, some of which I love because I learn so much from them and ultimately grow as a person, and others because it relates to the work I do.

Once, I responded to a request for help on one of the Chronic Fatigue ‘Support’ Groups.

A young girl had been diagnosed with CFS and was specifically asking other members for answers and advice on how they manage their energy.

As you would expect in these groups, the trail of comments that followed were from other sufferers empathizing with the young girl and sharing their symptoms and problems too.

A couple of members even suggested that she should be tested for other conditions that she could possibly have as well.

The only vaguely helpful advice, which after all is what the young girl was asking for, was from a lady suggesting she see a chiropractor for her pain. This of course could help manage her symptoms, as the medical professionals recommend.

After reading through these comments, I responded, to offer some help and advice, as the young girl had requested.

Unfortunately, it’s impossible for me to write everything I did to recover from CFS in a Facebook comments box, so I referred the girl to my website and social media channels, for her to follow the tips that I regularly share on those, and for her to get in contact if she so wishes.

Then I wished her well and went to bed.

The following morning I noticed that in response to my comment on the post, another lady had written “Go away”.

Interesting I thought!

You may have noticed that, whenever I write about CFS support groups, I always put the word ‘support’ in quotes.

I am of course being ironic because, in my experience, many of the groups out there on social media are not supportive at all. They aren’t supporting sufferers to a recovery of this condition but supporting them to remain with it and even to wallow in the condition.

That poor young girl took the time, courage and the little energy she had to reach out for help and advice. She was taking steps to find solutions and possibly wanting to take steps to improve her health but was given no hope whatsoever.

All she got was the other members’ tales of woe, along with one ‘unhelpful lady’ shunning any useful advice, by telling me, the only person who had recovered from the condition and who had attempted to give any productive help, to “go away”.

I’m so relieved that I wasn’t on Facebook, and in any of these ‘support’ groups all those years ago when I was unwell, I quite possibly would still be suffering now!

I know it can feel very comfortable to be with people who are suffering in the same way as you, and that’s fine if it’s in moderation but my advice to you is:

  • to notice the groups you get involved in. Are they supporting you to recover and to grow? Or are they ‘supporting’ you to remain where you are? Choose the ones that are supporting you to grow not the ones that are holding you back from recovery.
  • to follow the people who are where you want to be. For example, whether you want to recover from M.E./CFS, improve your energy levels or just be a more positive, happy individual, only follow or mix with those who have already achieved these things and notice what they do to stay well.

Thankfully, I’m not the only one doing this work, there are more and more people out there doing the same as me; sharing their knowledge and tips for recovery.

Let’s hope that the people who really want to recover from this debilitating condition, and who are willing to do whatever it takes, can avoid the ‘naysayers’ and are able to find the support that will help them to be well again!

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