My experience of having a friend with M.E., in honour of M.E. Awareness Day

My friend Bee

So the first thing to point out is that I am not Bee!  In fact you could say that I don’t really know Bee that well, she is more a friend of a friend, and I did bump into her from time to time at university.

However, our paths crossed at a university re-union.  I came to see my friend, but I found I was interested in Bee’s story, and I wanted to know some more.  Just before the reunion, she wrote an open email to us all, explaining that she had M.E. and excusing herself in advance for not joining in all the activities.  So, in the pub, I asked about the email and M.E..  I was fascinated with her story, how and when she got ill, the impact it had on her life, the fights she had to get the support she was entitled to, and her gradual success in beating the disease.

Bee’s impact on me

I won’t say anything more about her, Bee can do that much better than me!  Instead, I want to mention her impact on me.  I left our reunion and found myself continuing to process her story.  How could she get so ill?  Why did she feel she had to write an email excusing herself?  How did she improve her health?  While I could not find answers to these questions, it seemed there were many people like her, suffering in complete silence, not receiving the help they needed or deserved.

My fundraising

Now I’m not a great charity giver, but Bee mentioned a couple of M.E. charities and I felt I wanted to support them.  I was going to give some money, but thought more important than the money, was to get people like me to better understand M.E..  So raising awareness seemed to be a way I could help. Perhaps making a little money for an M.E. charity along the way, to support people with M.E. in Bee’s locality.

So I came to my decision, I would run for M.E. and get sponsored for it.  After just beginning to run for the first time after 10 years, a 10k run seemed a good target.  I made posters, designed a t-shirt to run in (with a little help!)  and promoted the run on my Facebook page.  I even told Bee eventually!

Other friends with M.E.

It was then that I got a great surprise.  Not one but two of my friends that I had known for years, admitted to me for the first time that they suffered from M.E.  It was only then I began to understand why Bee had written that email……M.E. sufferers seem to experience a very real lack of understanding, judgement and disbelief from those around them. So, not are they affected physically, but the judgement and misunderstanding of others causes them to suffer in silence. This is in addition to them having to deal with the illness itself.

I completed the run and have continued to run ever since, which has helped my health! My university friends all came up to support the event, and we had a lovely weekend together.  Coincidentally, the event occurred on May 12 2016, M.E. awareness day. As I finish this I am wearing my running T shirt from 2 years ago.

M.E. is a serious condition

M.E. is debilitating and people with the condition become disabled, there is no doubt about that.  Bee’s story really inspired me to take action to raise awareness of the devastating effects of the condition and also to give a message of hope to others that there are things out there might be able to help the condition, but I’ll leave it up to Bee to explain that one in her blog post on M.E. and Fibromyalgia!

All I can say now is thank you Bee. Also, if you have a moment, spend a time looking at one of the #missing millions campaign.  One of them just might inspire you to do something to raise awareness too!

Alex

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