Misunderstood = To fail to interpret or understand (something) correctly.
I have two daughters who suffer from Myalgic Encephalomyelitis (M.E.), defined as being “A complex illness adversely affecting multiple systems including the brain, heart, immune, neuroendocrine and circulatory systems.”
This is a hugely misunderstood illness, not just by a huge swathe of the general public but also by so many health care professionals who have been drawn in by the psychiatrists telling them that it is purely a Somatization disorder – i.e. psychologically based producing physical symptoms. This is not true, I quote this paragraph from Invest in M.E. (a respected charity who support sufferers, raise awareness within the medical community and invest in biomedical research projects into cause and treatments for the illness).
Definition Problems M.E. in the UK has suffered from the lack of adoption of a clear clinical diagnostic tool, resulting in M.E. sufferers not being identified correctly. Instead M.E. has been confused with other conditions that cause chronic fatigue. This obfuscation has lead to the psychiatric lobby being able to diagnose M.E. sufferers with “somatoform” disorders, such as “Faulty Illness Belief
Prior to their diagnosis I admit to being mostly ignorant about the illness. I had heard all the references to it being something called “Yuppie Flu” and meant sufferers had very little energy ~ that is where my knowledge ended. Having seen my daughters suffer and how massively it has altered the course of their lives I now know how fully ignorant I was. My fear is that, unless you live with it, or care for someone who suffers from it, the general population continue to live in ignorance about this serious illness and are blasé and unsupportive in their behaviour towards sufferers. So the large number of sufferers living with this life altering illness are left sadly very misunderstood by the majority. This is something I have vowed to work towards changing, by talking to the people who know us about the illness and joining force with charities working towards raising awareness about it and also money towards the funding of biomedical research to try and find out what causes it and treatments to help combat the symptoms and help those who suffer to reclaim their lives. There are people who will say “Oh why is she banging on about this again” and read no further, sadly I can’t do anything about that. BUT there are so many lovely people I have spoken to who have been surprised to hear about how M.E. can affect a person so severely and have asked questions, shown an interest and left me with the promise to help me spread the word ~ M.E. is not a psychological illness, it is not a case of “just being tired” but so much more than that.
Why am I writing about this now? Tasha is having a huge battle with M.E. and the symptoms it is throwing at her causing her to spend almost all of her time in bed, struggling to even send a text message (and so enlists my help to send it for her), is in pain, has digestive issues, can’t think clearly (brain fog) and can barely keep her eyes open for any length of time. Her mental health is in decline too because she worries that the people she cares about, the few treasured friends she has remaining may think badly of her. This is because due to this illness she can’t keep prearranged arrangements to see them or keep in touch as she goes for long periods of time without any contact. She worries they will think she is just being lazy and rude and will lose patience with her and become bored of supporting her because her illness goes on without her seemingly getting any better. Recent articles in the press such as… “ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers” which, was in the Telegraph, among others of a similar vein also printed in different publications, haven’t helped her with her anxiety about how others may think of not just her but others suffering from M.E.
Every time I see M.E. articles in the press my heart sinks as it is usually all about how psychiatric treatments such as Cognitive behavioural therapy (CBT) can help patients recover and get back on with their lives. Usually this advice is combined with the idea that Graded exercise therapy (GET) alongside CBT will be the absolute cure. I read these articles with a sinking heart and know that there are certain people who will use this (false) information against sufferers, telling them that they just have to work at telling themselves they aren’t sick and put on a pair of trainers and get on the treadmill and hey presto, they will be cured!
I am hugely against the idea of GET because in the beginning, when we were very new to living with M.E. we decided we would do everything we were advised and do whatever it takes to get the girls better. So we agreed to try it with our youngest, Tara, who became sick first. We were told to get her to walk to the first lamp post in our street as fast as she could and back again twice a day, no matter how tired or unwell she felt. Each day we had to add a lamp post and keep the speed up. By the end of just one week she was in a huge amount of pain, exhausted, waxy coloured, nauseous and just very unwell. So we discontinued hoping she would pick up ~ she didn’t. We ended up in a pain clinic and on amitriptyline then referred on to an osteopath who helped relieve the pain and carry out lymph drainage massage (which she taught us to do to continue at home). The combination of medication and osteopath helped enormously with the pain, but the damage by the GET lingered and 5 years on she is still mostly housebound, attending school via a virtual school using her laptop in her bedroom. Social activity with her peers has to be carefully planned with the knowledge that bed rest will be necessary for a few days afterwards. Tasha is more severe than Tara, she gets intermittent paralysis of her legs, burning sensation of her skin as if it is on fire and extreme fatigue, meaning some days she has to shuffle to the toilet on her bottom because her legs have no strength in them to carry her and allow her to walk. Both girls have a Blue Badge which we find invaluable and wheel chairs if we need to go more than a short distance.
However, I am not advocating that they don’t do anything at all either because it’s important to keep the joints and muscles moving in whatever way you can. Whether that is via relaxed passive movements for those severely affected and unable to exercise themselves, to gentle stretches, pottering intermittently around the house, walking, swimming, gentle sensible exercise etc – whatever you are able to safely and comfortably do without causing Post-exertional malaise (PEM)“is one symptom of chronic fatigue syndrome (CFS), but is itself more complex than a single symptom. Patients experience fatigue, pain, cognitive difficulties, sore throat, and/or swollen lymph nodes after previously tolerated physical or mental activity. These symptoms may appear immediately after the activity or after a period of delay, and may last days or weeks.” What you are capable of doing depends on the severity of your M.E. When the girls are able to they walk for short distances either with or without the crutches we have for these occasions with the back-up of a wheelchair should they need it. They do gentle stretches and try to keep their muscles moving and we very carefully monitor them, as they do themselves and pull back when they feel it is too much for their body to cope with. They are not lazy girls, before they became sick they were both hugely physically active, Tasha with sport and Tara with dance. They were devastated when they had to give these activities up and so when M.E. sufferers are called lazy it is like waving a red rag at a raging bull and I get onto my soap box and rant angrily on at anyone who cares to listen!
Thankfully there are others who feel the same way as I do, so I share this brilliant blog post in reply to the articles in the press saying that exercise is beneficial for ME sufferers ; Utting-Wolff Spouts
It is only by talking about it and challenging old out~dated beliefs that we can change public perception, gain support to raise funds for research into treatments for the illness along with tolerance towards those who suffer, giving them the much needed support and understanding they require.
Remember, the first step towards helping someone with an invisible illness is to tell them you believe them and move forward from that. For a sufferer to know they are believed and more importantly supported matters far more than you could ever know.