Wednesday, 2 March 2011

So I'm a Malingerer, huh?? Warning, bit of a Rant Ahead!!

With all the media rubbish about 'ME/CFS' that's intensified over the last couple of weeks - not to mention the recent changes to the UK benefits system which are going to make things much harder for those with Neurological ME, I've found that quite a lot of frustration has come to the surface which I usually try to keep more or less buried because it takes too much energy to deal with all the emotions.

Something I really hate is that so many people, particularly in the UK, see M.E. as some kind of 'malingerers disease', where we enjoy sitting around being lazy each day, living the high life, never having to bother with work because of our state benefits!! And well, you can't blame them, in some ways, because that impression has been thrown out into the world at every opportunity, through the media, medical schools, psychiatric research projects, and the opinions of the benefit agencies & insurance companies - not to mention the chronic over-diagnosing of this illness, where people who are not neurologically ill are given a diagnosis of ME, (Or rather, ME/CFS) when they are actually burnt-out, depressed, or in some other kind of fatigue state. But the truth of the matter is that those beliefs expose an inherent ignorance about what life is actually like for those of us with severe ME.

I've spent the last 15 years hiding as much of this illness & it's affects as is humanly possible from the people around me, out of shame and fear. It shouldn't have to be that way. We sure wouldn't expect someone with Cancer or Aids to feel they have to do so, right? And I don't want to be that person anymore. I want to get used to being more honest about what I'm going through instead of pasting on a smile and pretending I'm fine while you're here ... then crashing the moment you walk out the door!

I've had M.E. for 15 years now, & I don't think I could even begin to explain the utterly devastating affect this illness has had on my life. I lost a career that I loved. (nursing in a NICU unit, which I fought to keep pursuing for 8 years after I first became ill, despite extreme exhaustion & pain - I certainly don't think that is representative of a person who is looking for an excuse to not work.) I lost the ability to have stable & secure finances; the chance to find a partner who loves me, settle down, and have a family; a whole host of friends who couldn't cope with my complicated situation; my house - as disability benefits (benefits that I actually had to go to tribunal to get, because the doctor who 'examined' me didn't believe in M.E) didn't bring in even near enough money to cover my mortgage (At age 34, I now live in one room of my parents house - a high life indeed!); I've also lost the entire last 7 years of my life (for which time I have been housebound, very often bedbound. For the whole of the past year, I've been unable to even sit up in bed for more than a few minutes at a time - and even that causes pain & extreme fatigue afterwards.); My social life; The ability to walk my two dogs who I love more than life itself; and the right to live with dignity and respect are all gone now too - & that's only the things I can think of off the top of my head!

If one of those people who believes I'm just a malingerer could spend just one week living my life, there's no question in my mind that they would change their position.

Right now, about the only contact I have with the world around me is either through my carer, or on the internet. (I count myself lucky to have that ability as there have been many times over the years when even that was impossible!) Believe it or not, I found out a couple of days ago, on facebook, that my father (Whose house I live in) is making the move to self-employment. I barely see him for a few minutes a week - and the result is that I have no idea what's happening in the lives of my loved ones.

If I manage to go to the bathroom more than twice in a day, then that's a very, very good day. Two times a day is normal - and even that is a battle! I fight with my own body to have a shower once a week. It often takes me up to 2 hours because the crushing fatigue is so disabling that I have to rest every few minutes even using a shower chair ... but I'm too stubborn, proud, and guilt-ridden to ask for help. (though there have been periods in the last few years when I've had no choice but to have my carer help me bathe - Trust me, that is NOT something I would have put up with if I could simply make myself well again with exercise, diet, therapy, anti-depressants, etc etc etc!!!) I'm then wiped out for 2-3 days afterwards. I can't remember the last time I wore make-up regularly, I haven't had a proper haircut in years ... we just take a pair of scissors to my pony tail when it's getting annoyingly long.

Speaking of guilt, that's something else you wouldn't want to live with. My best friend before I became severely ill, has now been caring for me for the last 7 years. She's amazing and I literally couldn't survive without her, but I live every day with the guilt of the burden I'm placing on her. Worse, she's now developed post-viral-syndrome herself, & I can't help but be worried that she may have picked some viral trigger up from me. In addition, since my carer has been so ill, my 60yr old mother has had to start helping out with my laundry, and other jobs, only a few years after she herself became ill with Multiple Myeloma. The pain of all that guilt sometimes feels almost unbearable, like a physical weight on me!

I live everyday in pain, rationing my painkillers as well as I can because I hate taking them. (Another guilt to live with!) Dull pain, Sharp pain, numb, buzzing, urgent, weighted, spasms, migraines - the list goes on!) Sometimes my pain is so extreme that even wearing clothes or the weight of my (lightweight!) blanket on me is too much. I struggle to spend even a few minutes talking with a family member, and crash right afterwards. Light hurts my eyes. Noise hurts my brain. Both send me into a state of overload where it feels like I'm being interrogated! I have blood pressure drops when I stand (or even sit) that make me feel like all the energy is draining right out of my feet. Intense adrenaline rushes, followed by huge crashes. Palpitations. Crazy sweating - as though I have a bad fever only I don't. Insomnia, hypersomnia, (Oh, the irony!!!) sleep cycle reversal. Actually I have a list of symptoms so ridiculously long, (I haven't even got close to naming them all here!) that I felt stupid when I recently presented it to my doctor - who basically had no idea just how bad things are for me as I can rarely make it to the surgery, and she's unable to do home visits. (& this is one of the best doctors I've had since I became severely ill.)

At my worst over the last 7 years, I've had years where the vast majority of my time has had to be spent in a darkened, quiet room, staring at the wall. I've had months where on my worst days, I would be paralysed for hours at a time, not even able to lift my finger, never mind reach out and take a glass of water to drink.

Image of woman sleeping in darkened room copyright Chispita. Visit her Flickr site!>

My neuro symptoms drive me insane. (Haha!) I swear my iq has dropped 50% since I got sick. I can't remember things, (including both old and new memories) I can't recall words, or I come out with the wrong one. (That of course is providing I can actually find the energy to speak at all) I have brain fog so severe at times that I trip over my words and certainly can't make my mind focus on something I want to do, no matter how important it might be. I can't fill in a form by myself. I can't make my mind up about anything. I have problems hearing speech, or the tv, not to mention making my mind understand what's being said. I constantly zone out. A simple conversation with my best friend is exhausting and after a few minutes I just can't concentrate anymore, and my body starts to feel the post-exertional malaise - cos yes, even mental activity can set that off! (The brain is a muscle, after all, which requires energy to function!)

On top of all that, there's been loneliness, grief, sadness, anger, the inability to attend funerals and weddings, or important family events, Christmas days spent in bed. And the stigma, judgement & ignorance of people who don't understand (& aren't willing to try because of all the negative media about M.E.), not to mention medical care that can barely be called care. It's more than enough to boot you in the chest when you're really down. This illness just eats away at you, your life, & your coping abilities. It destroys family life. It damages your sense of self and worth. It takes away the liberty to be the person you feel really are.

How can anyone who's never lived with M.E. ever really understand what a price we pay to live this 'high life'??

Nobody chooses to live this way. It's forced upon us - and we have to learn to deal with it. The only other option is unthinkable - and we fight that option along with all the other fights, for the sake of the people who love us - and because we really do want to find enjoyment & happiness in our lives.

I just wish that the people spinning ME as a psychiatric illness would stop and listen for a moment. Choose to care about us as individuals and realise that something much more is going on here.

Why doesn't medicine learn from past mistakes. Parkinsons, MS, Aids, Epilepsy - so many illnesses, all treated with disbelief, prejudice, and cruelty, & labelled without scientific proof as hysteria, depression, hypochondria, etc. Those previous beliefs were proved to not only be wrong, and unjust - but also stupid and dangerous because so many people died before the medics and governments started to pay proper attention - not to mention the millions of lives which were wrecked in the process.

ME patients are talked about in the media and amongst medical circles as 'radicalised' conspiracy theorists, which I find highly offensive - but really, why would anyone be surprised by how strongly we feel about this and how hard we're willing to fight to create change??!!?? We're desperate. It's that simple. I've been living with ME for 15 years, and in that time, nothing has really changed - the same old stuff is happening over and again. I'm not radicalised, I don't send 'hate mail' or bomb cars, for heavens sake. I just don't agree with anyone who says that my illness is all in my head, and I'm willing to say so.

And that's my epic rant complete. (Sorry about the crazy length!!) All I can do now is try to move on, to pick up the pieces all over again and deal with the emotional fallout of this latest injustice ... and remind myself that change will come! Facts & evidence will eventually appear that are absolutely irrefutable, like they have for other illnesses before ours, and action will have to be taken.

Reader question about losses from neurological ME CFS

What have your greatest losses been over the course of your illness?

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)



  1. "ME patients are talked about in the media and amongst medical circles as 'radicalised' conspiracy theorists, which I find highly offensive"

    Couldn't agree more. I don't know if you were privy to the whole Sarah Myhill vs. Bad Science business, but that was a real eye-opener (whether you agree with Dr. Myhill or not).

    Never go near the BS forum unless you want your blood pressure raised (though if you have POTS, this can sometimes be beneficial!)

    It's full of antisocial nerds, frustrated medical undergrads and wannabe psychiatrists who think they're just 'so much cleverer' than everybody else.

    The level of vitriol, bias and lack of empathy has to be seen to be believed.

    When they're not attacking the sick and disabled, they're out baiting Gillian McKeith or some other poor New Age therapist type, as if by doing so they're fighting the worst evils of the 21st century.

    It's funny though, that these self-identified 'skeptical rationalists' allow psychiatrists to get away with the wildest claims - many of which seem to be based more on opinion than hard empirical evidence.

    They will also cherry-pick studies that support their angle: a favourite tactic. If just one study appears to back up the efficacy of CBT/GET, for example - they're all over it.

    But the studies that *contradict* that one (or suggest physical or viral causes) are often ignored.

  2. I've managed to more or less avoid the whole Sarah Myhill debacle though I've seen posts about it around the place and of course know what happened. Yea I wouldn't touch that forum with a barge-pole, lol!! I can't stand people who think they're cleverer than everyone else, and who treat other people so terribly and so little empathy or compassion. I think it must come from the need to boost each others ego's and self esteems, which are probably rather lacking! Sad really that they need to bring other people down to boost themselves up!!

    Seems to be the way of the world that people ignore the things they don't want to see, unfortunately.

    I have to say, having my rant has calmed me down considerably, lol. I feel a bit more peaceful having got it out of my system a bit. ;)

    Thanks for commenting! :)

  3. Heartrending and beautifully said, Susannah, and I could have written almost every word of it (had I the strength to type this much). I have a feeling it probably took you a while to get this down. I'm going to repost this.

  4. Hi Susannah. It really does seem to be a problem that "we look so well". The social and emotional pain of these illnesses are worse than the illnesses themselves. I have to TEACH every new doctor I get changed to. Sometimes I have just wanted to disappear if I was going to be so sick and just be abused when I sought help.

    Ok I have a question for you. We are both stuck in bed, I chose the identity of a bluebirdy, you chose "The thing with feathers" with the pic of a little bird. Hmmm. Something in our thinking wishes we could fly around, feel free from this bed, this room, this house.
    Nice to meet you. Keep in touch.
    (penlady from twitter)

  5. I could only read this by highlighting the whole thing like the first step before you copy something. Maybe my eyes are changing. Well I am really amazed how much we have in common. I don't have a carer, I live with my sick mother who also has my illneses, she can't get help either, and when Dad was alive, there were 3 terminally ill people in this house and we still could ot get help. We often have to phone each other because we can't get up to care for each other. I'm glad you can walk your dogs. I use a rollator walker outside the house so I can rest every few steps. I have a shower seat too, but can't shower every day. I have to use a dry shampoo between showers. We should share the gadgets we use with the other bedriddden lady you told me about. Maybe we should start a team blog where all bedridden people can write how they cope with different situations.

  6. Hi Nopostergirl, thanks for what you said!! :) Yea, it took a while. I usually have these posts on the go for a while before i post, doing them a bit at a time when I have the energy. I'm probably overdoing it right now but I'm in one of those 'stuff pacing, I want to do this!!' moods, lol. Not sensible, but maybe those periods of rebellion help me survive. Then again, I guess I'm just switching spoons - I spend time writing a blog post and that means I have to forego a tv show or reading time, or conversation with my friend/carer .. or sometimes a bathroom break. Sometimes that can be good - sometimes it's probably totally counter-productive. After 15 years of pacing though ... it's often just tiresome! Lol.

    Hi Sheila! I really do think that you're right, the social/emotional pain of having ME just makes the pain of the actual illness SO much worse!! I just don't think people realise how damaging it is to be so constantly invalidated and unfairly judged. To have the media give our friends and family the impression that we're lazy or mentally ill. That we're putting it on. It would be exhausting on the best possible day!! Yep, i've had to teach my doctors too. I'm working on breaking in a new one (LOL) but as I've barely been able to make it to the surgery all year, I'm not getting too far. She wants to try to find me a specialist who isn't all GET/CBT-y but there's no-one in the area and there's no way I can travel right now, sigh.

    I do love the freedom of birds - there's something very beautiful about it. I can't remember the last time I felt so free. Probably the last time I went hiking in the hills, before I first got sick. Gosh that was a long time ago!!!

    Sometimes different colour themes are easier/harder for different people. It's a big problem in webdesign. It could be just that affecting you.

    We do seem to have a lot in common. I'm so sorry to hear about your parents and what you have been through!! I know how hard it is to be this sick and have others sick too and you feel both frustrated and hurt that there's no-one to take care of you specially, and also frustrated and guilt-ridden because you can't care for the people YOU love. They seem such contradictory feelings, but I think it just shows our basic humanity. It basically sucks.

    I think I wrote the section where I talked about walking my dogs with very bad grammar (i've tried to correct it now) - I can't walk them anymore, thats one of the things I miss the most - one of the things I resent being taken from me. I'm completely bedbound right now.

    I like the idea about a team blog, but I think I couldn't commit to it at the moment as I'm only just starting to get this one off the ground, and struggling to follow other people's as much as I want to. Perhaps something for the future?? I think it's a wonderful idea because bedbound people in general tend to be so invisible to society, and even to each other.

    I'm so glad to have met you too! :)

  7. Can completely relate on everything. We're pretty much the same age, I live in a room, my parents live with me etc I would love to have a dog, but as we rent and I couldn't walk it it's a no go :0( I have a cat though, we all need a furry friend!

  8. Susannah, I am in the USA and I haven't heard of your illness. But then I'm a stay at home retiree so my contacts are somewhat limited. Lately I had knee surgery and it went sort of bad on healing and I have spinal stenosis. But I am improving. I can walk, go out, move about, etc. I was busy feeling sorry for myself. No more. After reading your so eloquent description of your plight I only have gratitude that I can do as much as I can.

    As an American I can't speak to your insurance, health care situation. It seems you are caught in a crack in the health care system. Many here have illnesses that don't seem to be acknowledged by the system. I am so sorry you have that problem as you seem not to be in a state where you can fight for your rights. Too sick. But I do wish you an improvement in your illness, or even complete recovery. Barring that, I hope your government does see where their health care money needs to go.

    Best wishes.

  9. Ladies, I'm so sorry I have taken so long to reply to you here. I'm behind on a lot of comments, for the obvious reasons. I want you to know though that I appreciate each and every comment, and they mean a lot to me!

    Livinglifefromabed - It does seem, from reading your blog, that we have a very similar life experience, doesn't it! I'm glad you have a cat (though sorry you can't get a dog!!) - I do think just having that special animal there with you through it all makes such a difference!

    Hi Judy,
    People aren't generally diagnosed with the name 'myalgic encephalomyelitis' in the US, except by specialists, as it's been innappropriately been placed within the CFS/Fibro diagnoses over there, instead. It's unfortunately led to an awful lot of misdiagnosis and untreated illness.

    I'm sorry to hear about your spinal stenosis .. that's pretty horrible and I think you have reasons to allow yourself to feel a bit sorry for yourself!! We all have our own pain to bear, and it doesn't do to compare TOO much - though I have to say I've found it useful myself to remember there are always people much worse off than me, no matter how desperate my situation is.

    Yes, I ... we all with ME, are definitely caught in a crack in the health care system. It's appalling really that it's gone on so long (decades, at least!) - but there it is. I do agree, very much so, that the worst thing about it is that in the case of this illness, and it's an issue in pretty much every country, actually, people are generally just too sick to fight for their rights. But then, I guess that's how they've got away with it for so long, really!

    Thanks so much for your kind words. :)

  10. Hi susannah, just wanted to say i have stumbled across your site and am so sorry to read about how unwell you are. I have CFS/ME and have times when I am housebound, but nothing like as severely as you. It must be just awful. You prob don't remember me but I did meet you a few times at church years ago and know your Dad well.

    It really sucks and I can't imagine the pain you are feeling.

    I have dark days where I feel robbed of so much, but I do get out of the house every few days and those days I am so Thankful for, and realise just how fortunate i am to be in this position.

    It has been good for me to read this, to be more aware of what people with severe ME are living with, and wish that someone would spend some money on proper research into this horrendous condition.

    Sending you a virtual and gentle 'hug'