I’ve been immersed within the M.E support groups again offering support and hope, listening and taking note. I myself hadn’t ever been able to stay within that environment for very long as I found it quite toxic and restrictive for my own wellbeing. I still felt this with a number of experiences I encountered with some aspects of certain groups on my return, even now from my position of recovery...which has been the catalyst for this post.
I have been guided to write this post not as I tend to focus on this side of things but as a result of listening to what’s needed within the wider community, and as I still keep hearing about astounding and shocking situations I cannot in all clear conscience not highlight the dangerous extremities of lack of understanding and support. It deeply troubles me dear ones that people still have a perspective about M.E (CFS) that is often stigmatised and is most commonly extremely hurtful and very damaging. People’s doctors, health professional or nearest and dearest saying things like...”If you just think positively. If you just get out of bed and exercise your muscles will recover.” “You just need to get a grip.” “I think you might be playing on this.” “Oh yeah that’s that psychosomatic illness.” “Have you done too much again.” “Watch you don’t make yourself ill again.” “Oh yeah that’s that tiredness thing.” “Well the tests prove there’s absolutely nothing wrong with you so you’re fine.” “The tests will tell us the truth because you’re obviously not.” “Oh that’s that yuppie flu thing.” “I’ve also heard people being called lazy and not trying hard enough, which is one of the most absurd things I’ve heard, as I’ve never come across anyone yet with this, who’s life story would state beyond a shadow of a doubt the complete opposite of this unfounded assumption is true! It has been proven time and time again that we are high achieving get up and goers, both professionally and personally, so in FACT the exact opposite from lazy is truth! So these are just some of the horrible and disgraceful and disrespectful comments people with M.E (CFS) have had to endure over the years, we have been shunned, insulted, abused, neglected and mistreated. All this adds a terrible burden onto a person dealing with all of this and many are just left alone, it has/is having a profound negative impact in so many ways. I’m writing this on the back of hearing it’s still going on after all this time, and people are still loosing their lives!
My M.E looked like it started with a horrible virus, got made a lot worse by a head injury, combine all that with much emotional stress.
The first large scale outbreak of this illness was in the Royal Free hospital in 1955 and it affected patients, doctors and nurses. However similarly it has been reported that unexplained illness with the very same types of neurological, muscular, immune and nervous system problems can be traced as far back as 1750. It has also been reported that Charles Darwin and Florence Nightingale had it. It has been listed in media as the disease of a 1000 names due to the fact that many scientists and decision makers can’t really come to a definitive decision and keep changing the label, which makes things even more difficult all round! So not only does all this stigma, lack of understanding and lack of support have a vastly destructive effect on patients mental wellbeing, but as we know the mind affects our physiological state and our physical health. Lack of support and understanding at this level is extremely traumatic and can be the catalyst to other conditions. It has a profoundly negative affect within family and friend circles. And eventually has a knock on effect with all welfare, safety, security, economics, self worth, confidence, all social interactions. And with all this added trauma it’s no wonder that often a persons ability to trust others becomes affected.
Here’s truth...Severe M.E is an extremely complex, searingly painful, life changing illness which usually causes multi systems dysfunction. Again as with any disease there are variations. With some like me in the 25% severe range all bodily systems didn’t work effectively, this has had people like me bedbound/housebound for many years, even decades. It makes all of your senses extremely sensitive, which brings on extreme nausea, dizziness, fainting, slurred speech, so much so that we have had to stay in darkened rooms, unable to read, write, speak, with no stimulus from even the slightest noise, movement, touch, smell or taste. Which makes life very isolating, and worst than being imprisoned. It makes your body very vulnerable to infections, stress of any sort and other secondary conditions, which can become life threatening. The cognitive symptoms make it often impossible and at best difficult to understand what people are saying, and also to articulate what we want to say, see, write, read. There have been times that I have completely forgotten where I am/was and who my nearest and dearest are. Spacial awareness and balance are a massive problem, so even when you do start to cope with getting out of bed, you need support and supervision because falls are many, cognitive dysfunction, spacial awareness dysfunction, extreme joint, muscle, tendon, nerve pain and problems, fine motor skills impairment, make cooking and many other things exremeley difficult and often very dangerous! Then there’s the fact of that all encompassing fatigue (which is not tiredness!!!) it affects not only your muscles but organs, cells, systems, bones nerves etc... SO PLEASE lovely people if you know of someone with this illness I absolutely implore you to think before you speak, have empathy, do some research so you can at least try to understand what the person is going through. Please stop blaming people for having this illness, or when you perceive they have done too much....Be kind, be gentle, be considerate, however small that may seem to you, it can mean the world to them. I’m pretty sure people wouldn’t make all these negative comments and assumptions to or with someone who had cancer or any other potentially life threatening disease.
Also above doesn’t stop when you are becoming un bed-bound or house bound, as rehab, recovery, integrating back into society is a whole individualised mind boggling, heart wrenching book of it's own.
And another thing I do know for sure is it is critical whist recovering for people to receive support to enable them to support themselves effectively. We cannot continue to think it's acceptable in any way for human beings to be treated this way. People with these conditions need understanding, kindness, community, empathy, support and advocacy all round.
If you’re reading this and still have this illness, please don’t blame yourself beautiful soul, you didn’t bring this on yourself. And even if you do have a relapse after trying your best to get on with your life despite a mind-boggling amount of symptoms and under all this added pressure, it’s not helpful to keep saying, have you/ I done too much, all this blame isn’t good for anyone! It’s because things have gotten out of balance just like any illness, so it’s just time to reassess how to get everything working harmoniously again. It’s much more empowering to say “what can I do that will help me find balance or harmony again.”
There has been lots of other extremely outrageous, outright dangerous and shocking things gone on here, due to ignorance, lack of understanding and of course a collective consciousness of ‘well if we can’t see it on our machines, in our labs then it’s not real.’ This has affected people through media, communications and assumptions, it has infected the minds of many as a result.
So this just means that machines are needing updated doesn’t it? Or alternatively, I ask you has this illness which now affects millions, with 25% affected severely like me, been the catalyst to 'human beings' with hearts, minds, spirits and souls examining the 'real' nature of 'many so called' unexplained diseases out-with the pathology labs? 💜