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.

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.

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.

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!

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?
                            My 10 Tips For Managing CFS
                            Welcome To My Weekly Diary Series