Are people with ME/CFS afraid to discuss their mental health struggles?

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Historically ME/CFS has been dismissed or misdiagnosed as a mental illness – hysteria, depression, anxiety and more recently conversion disorder. Sadly this view still stands today with many doctors, and it means patients can often go years without a correct diagnosis. Many doctors are still sceptical about ME/CFS and they refuse to believe it’s an actual physical condition, even with all the mounting evidence. 

And it’s not just the medical profession that perpetuates this myth. Mainstream media and the general public all play their part in making people with ME/CFS feel like they are under attack, and constantly having to prove their illness is ‘real’ and not ‘all in their heads’.

But having a chronic physical illness does not make us immune to mental illness, in fact struggling with constant pain, exhaustion and the multitude of symptoms that accompany chronic illness, makes us more susceptible to mental health problems. 

So, how does this situation affect the mental health of ME/CFS patients? How does the constant denial and rejection impact patients who are living with a debilitating physical illness? And what about people with ME/CFS who also struggle with mental illness? Are the misconceptions surrounding ME/CFS deterring people from getting vital treatment for their mental ill-health, for fear that their very real physical symptoms will be dismissed? 

My Story

I have suffered with anxiety and panic attacks since I was a young child, and later in my teens I developed depression as well. Due to the stigma surrounding mental illness I went many years without a diagnosis or treatment. 

Fast forward to my twenties, and following a number of infections and viruses, my physical health deteriorated too. 

Due to my history with mental ill-health, and the reluctance within the medical profession to believe in conditions like ME/CFS, I was fobbed off for years. My physical symptoms were blamed on depression and anxiety, and without a correct diagnosis or treatment my physical health continued to decline. 

It was actually another 10 years before I was correctly diagnosed with ME/CFS. I often wonder what my life would have been like if I had met the right doctor, willing to investigate my symptoms, at the start of this illness – would I have made a recovery rather than spend years in a downward spiral of worsening health?

Is it any wonder that my mental health deteriorated too? I was suffering with unexplained physical symptoms on my own, without the much needed support of my doctor. I was constantly being told that my pain, fatigue, dizziness etc were all in my head. That kind of dismissal can be soul destroying, and it led me to feel very desperate. 

Chronic Illness and mental health 

The truth is; our physical and mental health are inextricably linked, and people who live with a long-term physical condition are also more likely to experience mental ill-health, such as depression and anxiety.

More than 15 million people – 30 percent of the UK population – live with one or more long-term conditions according to the Department of Health (2011) and more than 4 million also have a mental health problem. Evidence demonstrates those with a long-term condition are two or three times more likely to develop mental ill-health. People two or more long-term conditions are seven times more likely to experience depression than those without a long-term condition (World Health Survey, 2007).

Chronic ill-health is exhausting, and it’s no wonder it affects our mental health too. The constant pain, the unpredictability of our symptoms, the loss of self and purpose, the limitations put on our lives, constantly fighting to be taken seriously and to get treatments we desperately need – all take their toll. I challenge anyone to live with this daily, without a break, not to get depressed at some point. 

Untreated mental ill-health is damaging

Though mental illness remains heavily stigmatised, it is common. About a quarter of the population will face a mental health issue in any given year. With more than half of all mental illnesses left totally untreated, millions of people needlessly suffer with unnecessary symptoms.

Mental illness is not all in your head. It’s the product of brain chemistry changes. So mental illness can affect your physical health too. 

Over the years, I have felt compelled to downplay my mental health problems so my physical symptoms would be taken seriously. I was afraid to seek help for my depression and anxiety. But mental illness is just as serious as physical chronic illnesses like ME/CFS. 

Not only did I fear that discussing my mental ill-health openly would lead to my physical symptoms being dismissed, I also sacrificed my mental health and spent all my energy concentrating on improving my physical health. I have remedied this in recent years, and I now take the time I need to nourish my mental wellbeing, but I know my overall health has suffered from the lack of mental health treatment over the years.

What we have to remember, and what doctors often forget when discussing treatments and ongoing care is, our physical and mental health are not separate entities. Our minds and bodies are one, and therefore should be treated this way. 

Do we actually discourage the discussion of mental illness within the ME/CFS community? 

It’s not just with doctors that we fear discussing mental health issues. It’s also on social media, the general media, and sadly, often with our friends and family too. 

My concern is that we actually discourage the discussion of mental illness within the ME/CFS community because we are afraid of how we are portrayed, or afraid of how this will be reported in the media. 

I worry about how damaging this attitude is to those of us living with mental illness.

It’s understandable considering ME/CFS has been treated as a physiological condition for decades. And the many claims of cures using talking therapies like The Lightning Process, CBT & Mickel therapy means we have to protect our community. But are we too quick to get defensive when mental ill-health is discussed? 

I completely understand the need to shield a community that has been criticised and mistreated for decades. But by doing this, are we downplaying how serious mental illness can be? Are we somehow, unwittingly, invalidating the struggles of people living with mental ill-health? 

Talking about mental health is vital

Living with a debilitating chronic illness like ME/CFS is hard enough, but the added pressure of not being able to discuss our mental health openingly, without fear of judgement, adds a whole new level of despair. We need to have a platform to discuss our mental health struggles, because bottling them up leads to more suffering.

I have always openly discussed my struggles with depression and anxiety on my blog, but I have to admit to downplaying it sometimes within ME/CFS groups. The mistreatment of our community, and my own misdiagnosis, has definitely made me more reluctant to share my mental health challenges.

But talking about mental health is vital. Undiagnosed and untreated mental illness can kill.

Can we accept that just because we have one diagnosis this does not exclude other illnesses, mental or physical? In fact those of us living with chronic illness are far more susceptible to developing other comorbid conditions. 

Can we accept that living with ME/CFS, or other chronic conditions, not only takes a huge toll on our bodies, but also our minds?

Can we please find a way to safely discuss our mental health problems within the chronic illness community without fear of being judged? Can we find a way to remove the stigma surrounding mental illness?

Please don’t feel ashamed to discuss your mental health struggles. Mental health is just as important as physical health. 

By spending time on your mental wellbeing you are able to do what’s best for your body and mind. Living with an incurable, and largely untreatable, illness means we are limited in what we can do to improve our physical health. So anything we’re able to do to better our overall health is a bonus.

If you are struggling with your mental health please know you are not alone. I have written a blog post with tips that have helped me get through bad mental health days – maybe some of these strategies could help you too. 

The Samaritans offer non judgemental support if you need someone to talk to, and their lines are open 24/7. Their Free 24hr helpline is: 116 123. Or if talking is too exhausting for you, you can contact them via email: jo@samaritans.org

Take care x

Do you find yourself downplaying your mental health struggles for fear of your physical symptoms being dismissed? 

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4 Comments

  1. I have suffered from depression on several occasions and currently am experiencing the longest period of depression ever, 3.5 years. I also have had M.E for 25 years. And then anxiety joined the club too. There have been times when I haven’t been depressed but the M.E has been bad.
    I’m too depressed to write much now, but thank you for the post

  2. I do get chronic fatigue because of EDS but not diagnosed with a chronic fatigue syndrome. However, this post is relatable to some many illnesses. Like you, I suffer with Depression and anxiety and I developed Borderline Personality Disorder because no one believed I was physically ill for years. Thanks for sharing this post because mental health and physical health definitely are not separate to the other x

  3. Is it possible to avoid phrases like: ” their illness is ‘real’ and not ‘all in their heads’.”?
    Mental illness is very real and can be very deadly. I have ME and have lost a friend to mental illness. I appreciate your post – it addresses a very important issue – but I don’t like people with ME using those terms. For many people it could appear that we are perpetuating the marginalisation of mental illness and intentionally bringing other people down in order to bring ourselves up. In articles like this I feel we need to explain the origins of those sentiments and put them in their context when they are used. I think that a slight rewording of that paragraph would help immensely to avoid that perception.

    1. Thank you for your comment Kelly. If you read the full post I make it very clear that mental illness is just as serious and ‘real’ as physical illness, and is not ‘all in our heads’. But I have used these phrases because I have come across this discrimination multiple times over the years, and I know many other people with ME have too. I am not perpetuating any myths, my post is designed to combat these myths and start a discussion that i feel is desperately needed. I know how real mental illness is, I have lived with it most of my life. But i am sorry you feel my post does this.

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