Wednesday, 29 March 2017

Are the CFS Community Their Own Worst Enemies?

Last week I put up a post on my thoughts of how my mental health could be connected to my physical health, namely my CFS. The reaction has amazed me, it’s educated me it’s saddened me, yet also boosted me. Most of all it has completely shocked me how all the negative reactions came from fellow sufferers.

My physical health complaint was diagnosed 18 months ago, as Chronic Fatigue Syndrome (CFS). My mental health complaints of Depression and Anxiety have been an issue for me since my teenage years, I am now 38. I also suffer from stress.

The Best Version of Kelly

I’m not medically trained and I’m not a scientist. I am however well educated and sensible and most of all I know my own body. I understand my mental health, I know how it affects me. I know what triggers it. I know how physically exhausting and debilitating the effects of it can be. If you think Depression isn’t stressful and couldn’t possibly exhaust someone physically then you haven’t seen just how many days and nights I’ve spent on the floor in uncontrollable fits of tears, punching my head and pulling my hair in sheer frustration and despair. It is real, it is horrendous and it is most certainly not ‘all in my mind.’

I believe strongly that our psychological and physiological health are intertwined. I feel there is more to the human body than any of us understand.

I think as a society we want to neatly place mental health into its own separate box. So, if we don’t suffer or if we want to hide our suffering we can distance ourselves from the stigma of mental health.

The Best Version of Kelly

My understanding is that clinical Depression is caused by a chemical imbalance in the brain. Anti-depressants control that imbalance. That is physical. The chemicals are physical. The medication is physical. The symptoms of Depression may mainly be psychological but there are physical symptoms too.

Stress and Anxiety also cause chemical imbalances. The body creates extra cortisone and adrenaline when we are stressed. Over a long enough period this can leave you with adrenal fatigue. It is a physical reaction to a mental health problem.

Please remember this is my understanding and opinion only, based on my experience and my reading.

I strongly believe the years of stress my body has been put under was such a physical strain that it triggered my CFS. Currently no one can prove I am right and no one can prove I am wrong.
So why did me airing my thoughts on this get me into so much trouble with many fellow CFS sufferers?

It’s not easy suffering with an unseen condition, especially one that can’t be tested for so can’t be ‘proven’. We as sufferers know it exists, we live with it daily but how do we make others understand what that’s like? How do we face the stigma, the doubt, the confusion and lack of understanding?

We must fight against it, speak out, educate and make ourselves heard. I hoped my blog may play a small part in doing that. I hoped fellow sufferers would get on board with that and share their experiences too.

The thing is that many of these people have spent years, decades even, trying to prove this condition isn’t imagined or ‘all in their head.’ So many of them felt that seeing CFS and the words mental health together in the title of my blog was disastrous and set their hard work back.

That wasn’t my intention. I simply wanted to explore the connections between my physiological and psychological health. I wanted to see if other CFS sufferers spotted similarities between my story and theirs.

Many did, for every negative comment I received I got a positive one too.

I believe what those who reacted negatively misunderstood my whole point and failed to see that in my opinion no condition, mental or otherwise is ‘all in our mind.’

‘All in your mind’ suggests imagined or made up.

Trust me Depression is neither of those things, neither is Anxiety and neither is CFS.

The Best Version of Kelly
I had to use this picture as I unintentionally look suitably confused.

Many of the CFS sufferers that read my blog were completely dismissive of my ideas. They wouldn’t let me defend myself they simply banned me or got me banned from two ‘support’ groups I was in on Facebook. They showed their own ignorance in more than instance. I think the worst one I read went along the lines of, ‘You’re suggesting my CFS is all in my mind, i.e. a mental health problem.’ Or the one who said ‘Depression can’t cause CFS.’

To the first I’d like to say that neither CFS nor mental illness is all in the mind, they are real and each have physical elements. To the second, no my Depression alone didn’t cause my CFS. To both I would say, open your minds to the possibility that our physical and mental health is interlinked in ways currently beyond our understanding.

I recently read about a study that has found performing a brain scan on Depression sufferers could determine which treatment would best suit them. It’s all to do with seeing how parts of their brain are connected. Correct me if I am wrong but I believe my brain is a physical organ and that current scan technology only shows the physical. I’ve yet to hear of a scan that can read our thoughts and mind? So, Depression can’t be simply in the mind, can it?

We all accept generally that the reverse is true. We know cancer can’t be cured by the power of the mind but we often agree that a positive attitude can help. Who's heard the phrase ‘They will be ok, they are a fighter.’

That’s not to say a positive attitude alone can cure our CFS, of course it can’t but it may help.

Let me warn you though that you will share that positivity with many CFS sufferers at your own peril. Many of them don’t want to hear it. They don’t want to know someone is doing better than them. Even they doubt the milder cases of CFS. You’re not as ill as them so you probably aren’t ill at all. One said to me ‘If you are talking about my illness you need to know an awful lot more than you apparently do.’ Notice how she said ‘my illness’ not ‘ours.’ I was dismissed as even a real sufferer as I interpreted the cause of my condition differently than she had. I was even told 'based on your appearance and mental health issues you can't have CFS.' A fellow sufferer basing their assumptions on appearance!

The Best Version of Kelly

Who is to say there is only one type of CFS. There are many types of cancer, and treatments are decided upon accordingly. There are many types of Depression and equally different treatments will have different success rates dependant on type. So maybe different treatments work for different types of CFS?

I came across a UK girl aged just 24 who has recently been diagnosed with CFS. She too is writing a blog about her efforts to get well through changes in her diet and exercise. She hoped her blog would share positivity and add a piece to the puzzle for people. Her positivity and efforts haven’t been welcomed by the CFS community, she too has faced hurtful comments and resentment and was accused of potentially harming her fellow sufferers. Thankfully she isn’t letting it put her off. How can these people in the CFS support groups justify treating a newly diagnosed and young girl in that way?

We all may have slightly different symptoms in varying severities and the original trigger of our conditions may vary too but we all have an unseen and poorly understood condition. So, I urge you to stand together, embrace your similarities and your differences. Keep your minds open. Show support and understanding. Tell your story and listen to those of others. Educate and support. Don’t bicker, hate, belittle, resent and doubt. Or you’re frankly as bad as all those non-believers you’ve spent years campaigning against.

I want to end on a positive note by saying that many people from the CFS community offered me support and encouragement last week too. Some people agreed with my post and others recognised their own story in mine. I was also given a lot of helpful advice and information. I'm therefore very grateful I went ahead and posted it.

Thank you for reading.

Kelly x

Suggested Posts: Is CFS a Mental Health Issue?
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                            Welcome To My Weekly Diary Series


  1. Love this Kelly. You're so right. Yes, I know we have a hard time with CFS, but it doesn't define us. Yes, our mental health may not be the cause of CFS but it certainly doesn't help things. It is a vicious circle... our physical health affects our mood which then makes our fatigue worse. IT DOES NOT MEAN IT IS ALL IN OUR HEADS OR THE PRIMARY CAUSE so you are so, so right. Thank you for the mention. We should be supporting each other and I certainly know that a glimpse of hope from someone else's story would have helped me when I was really bad and searching for answers on whether I would improve. It's not all doom and gloom! Keep up the good work :). Amy Louise xxx

  2. And again you ask a very interesting, yet confrontational, question. I think you might be right. I have seen "wars" within ME and/or CFS communities which are insane.

    I can think of several reasons for this phenomenon, and it might be very interesting for social behaviourists to examine these.

    Last year I heard about the Minority Stress Model, which is developed for LGB community and now is adapted for LGBT community. I think it might apply here as well. (In fact, I think it will apply to disabled community in general.)

  3. The reason that people with myalgic encephalomyelitis (ME) get upset when they come across blog titles like yours (Is CFS A Mental Health Issue?) is easy to understand once you begin to study the history of this disease. It's really quite shocking and horrifying how some patients have been mistreated by the psychiatric profession, and how many thousands of others have been completely denied medical treatment or dismissed, left to languish in dark rooms for years or even decades. I encourage you to read up on this. I'm currently too ill to spend an hour writing up a concise intelligent response summarizing all that history here, so I will post a link to one of David Tuller's articles. You can google him to find more recent work he's done on exposing the fraud of the PACE trial. You could also google Karina Hansen and read up on the nightmare she lived through when she was forcibly dragged from her home and locked up in a psych ward for several years as a result of her ME being reduced to a psychological condition. There is a lot to know about ME and I hope you take the time to do more research about it. You will be blown away.

  4. Don't you guys think that the writer is really putting so much effort in the articles nowadays.
    Dunno about you guys but I most certainly do.
    Thanks again.
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  5. What a fantabulous post this has been. Never seen this kind of useful post. I am grateful to you and expect more number of posts like these. Thank you very much.

  6. im paralysed due to an injury and comparing my journey to others can really effect me.
    you make some really great points here x

  7. As someone with both depression and CFS, I reacted pretty badly to the title of your CFS/mental health post. Mostly because both my counselor and my new doctor wrote off the CFS as depression, despite me telling them repeatedly that I knew depression and I knew the difference. My doctor asked me, after I had been on depression meds for 2 months, if I was ready to go back to work. So I have a fairly strong reaction to the idea that they are interchangeable. However, I think you're right in that burnout and depression were a contributing factor to my CFS. And CFS made my depression worse. And treating the depression has made the CFS easier to deal with (nothing like a dark, isolated room to help with depression, right?!). Given that, in a world where people only read headlines, I do still find your blog title distressing because people like my doctor exist. I wish there was a reasonable way to address the issue without all the assumptions.


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