Not being believed

Yesterday morning I appeared on a phone in on BBC Radio Bristol. The subject was ME/CFS and how sufferers are often still not believed.

Please note: this programme is no longer available

A recent report in the news shows that many parents are being accused of fabricating their children’s illness despite it being a recognised condition. This is very upsetting to hear as I went through a very traumatic time, as did my parents when I was first ill with ME at the age of 9 back in 1992 when diagnosis of ME in children was quite rare and the medical profession had very little understanding of it. It is so sad to hear that perhaps very little has changed in 25 years.

Speaking about my experience on the radio has got me thinking about what I went through and how many other people could have gone though similar traumas.

I never wanted to connect with support groups or the ME Association when I was teenager and older as I didn’t want to accept that that was my life and I found it really depressing that a lot of sufferers seemed to be hoping for a cure based on the idea that ME was caused by a virus. This is a very controversial issue. I think that because viral symptoms are often the first thing that people notice as their health is going down hill they often deduce that the virus has caused the ME. However, I believe that the body was already under immense stress and that the virus was the last straw. I believe that there are many different triggers that cause this stress on people’s bodies and that it is often a combination of stressors rather than just one. These stressors may be very physical in nature, environmental, or genetic but also may be emotional or psychological too. I think that there is a predisposition to the condition which has a genetic basis to it but like most health conditions including cancer and heart disease, environmental factors may be the tipping point that pushes the body into a disease state.

I wonder whether the widespread misunderstanding of ME and denial of it as a ‘real’ illness by some people who say that it is ‘all in the mind’ has contributed to many people with the condition being resistant to the idea that the illness could be triggered by factors other than viruses. I think this is a real shame as there may be many sufferers effectively giving up taking their life in their own hands and being open to a holistic healing process that may include treatments that not only treat the physical symptoms but also address emotional, psychological and spiritual imbalances.

Of course when you are going through the initial crash phase of the condition all you can do is rest and it is not possible to do much else but in many cases, apart from those with severe ME who remain in a bed bound or chair bound state long term, it does often become possible to begin to look at what might be inbalanced and start a process of working on reducing the stresses that contributed to the development of the condition. For me I started with nutrition and I found it very helpful to make some changes to my diet to both take the stress off my digestive system but also to include new foods and supplements to give me the nutrients I needed to heal my body. Then later I began to look at psychology and my emotional state and what I was experiencing on a spiritual level. I will say though that this whole process has taken me many years and it was often a case of one step forward, two steps back and there have been many stages of my illness. Overall though, most of the many things I have tried to help me recover have moved me forward in some way, some a lot and some in a more subtle way that took me some time to notice in a tangible way.


2 thoughts on “Not being believed

  1. Hi,

    I absolutely agree about the causes and predisposition towards ME/CFS. I think too, your thoughts on why many people reject possible psychological elements to the predisposition are accurate too. I’m a lot older than you and I remember ‘yuppie flu’ appearing in the media years before I developed it and the ensuing controversy. I think it’s a shame too,so many ave closed themselves off to a more holistic approach – it’s helped me enormously. I also think there’s a lot of misunderstanding amongst sufferers around CBT as a result : they think it’s being offered as a cure, when actually everyone who has any kind of chronic illness in the UK is supposed to have access to CBT to help them cope. I imagine misinformed and emotionally inarticulate GPs have probably contributed to the misunderstanding as well. But the more you, I and others talk about our journeys, the more genuine understanding will spread, even if it’s a slow process.

    Liked by 1 person

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