A Reluctant Confession for ME Awareness Week

Some years ago, around the time I was diagnosed with ME, I reconnected with an old school friend. She took to phoning once or twice a year to update me on her news, and when she asked what I was up to I would explain (yet again) that I was chronically ill.

Her responses progressed from sympathy, ‘Get well soon!’, through incomprehension, ‘What, ill again?’, to incredulity, ‘You can’t still be ill?’.

The last time we spoke I’d been housebound for almost five years. She described her new job, her new husband, her new home, her new nephew, before finally asking what was new with me. When I replied that I was still sick and still housebound there was an awkward pause.

      So…it IS cancer then?’ she finally blurted.
      ‘Not cancer,’ I told her ‘I have severe ME’.
      ‘Oh, so you’re not reeeeally ill then!’ she pronounced with palpable relief.

I tried to explain the extent of my illness but she cut me off. Apparently she knew all about ME because her next door neighbour had had it the previous year.
      ‘She’s a single mum,’ she told me pointedly, ‘but SHE worked full-time and she was better in a few weeks.’ 
I tried explaining that her description didn’t meet the neurological criteria for ME but it was clear that nothing I could say would change her opinion.

      ‘Of course, I really should have known that it wasn’t anything serious,’ she told me at the end of the phone call, ‘if it had been cancer you’d have been dead or better by now.

And there’s the rub: ME is an illness that rarely kills but cannot be cured. Which leads to my reluctant confession, because you see, when I was at my very sickest (bedridden and in pain; paralysed for hours at a time in a darkened room) with the thought of a lifetime of illness stretching before me I sometimes secretly wished that it had been cancer. At least then the doctors might have done something to help me. At least I might have had a fighting chance of recovery.

It’s the sort of thing you can never actually say aloud. The sort of thing that would cause untold offense to anyone without first-hand experience of ME because, lets face it, we’ve all been touched by cancer at some point in our lives, even if we’ve never had it ourselves. But let me explain:

No one ever doubts the seriousness of cancer or tells the cancer patient that it is all in their mind and the sure-fire cure is just exercise and positive thinking.

Every doctor will have heard of cancer. No medical or nursing student will graduate without a basic understanding of cancer’s causes, effects and treatments.

No one blames the cancer patient if they aren’t getting better or tells them that they simply aren’t trying hard enough.

While cancer always carries a risk of death it is rare that doctors cannot attempt at least something to treat it. Most patients have a chance of recovery, however small.

Billions of pounds are spent globally every year on biomedical research for cancer. New drugs are being developed all the time and recovery rates for many cancers continue to improve.

While the mortality rate for cancer is much higher than for ME, the idea that people can’t die from ME is entirely mythical. Deaths from ME are typically prolonged and agonising, following years or decades spent isolated and bedridden without adequate medical care. While an estimated mortality rate of 3% may not sound significant, if that was your child, your sibling, your partner or parent, even one death from ME would be one death too many.

Doctors liken the effects of ME to harsh chemotherapy; its severe form is more debilitating than both AIDS and terminal cancer right up to their very final stages. Dr Mark Loveless, Head of the AIDS/CFS Clinic at Oregon University, described patients with severe ME as feeling effectively the same every day as an AIDS patient feels two months before death. Another specialist in both conditions, Dr. Nancy Klimas, controversially stated that she would choose to have HIV over ME because of the treatments and better quality of life that would be afforded her.

Friends that have survived cancer have told me they were lucky not to have what I’ve got. A terminally ill friend told me that while she didn’t want to die, she would take her own life if our roles were reversed rather than face the prospect of lifelong illness.

Healthy people tell me to ‘look on the bright side, at least it’s not cancer’ as though this will somehow make it all OK. I don’t know any other illness for which this would be acceptable. No one comforts patients with MS by comparing it to Alzheimer’s, or tells someone with cancer that at least it’s not Motor Neurones Disease.

Please don’t think for one moment that I am trying to belittle cancer or underestimate the ordeals that cancer patients go through. I myself have lost friends and family to cancer so I know its devastation, but because of ME I missed out on seeing them in the last months of their lives; I couldn’t visit them in the hospital and didn’t make it to their funerals to say goodbye.

Following the blog of a woman with terminal cancer, I was horrified to realise I envied the amount of life and friendship she managed to cram into her final two years while I wondered from afar if I would ever get the chance to experience those things again. She is now dead, I am still housebound and I live with the knowledge that I would happily have traded some of my years for a fraction of her experiences. I cannot tell you how shitty that makes me feel or how terrible a person I fear that it makes me.

I have lost loved-ones to cancer, but also watched others recover and return to full healthy lives in the years of my illness while my life stays on hold. Weddings and christenings, parties and holidays all go on without me. I have no doubt there are some (but not all) with a terminal diagnosis that would happily trade death for severe lifelong illness, but at my worst times of illness I couldn’t help but wonder if ‘dead or better’ might not be preferable. I know many people far worse affected than me who wouldn’t hesitate to take that gamble. On my better days I wonder how I could possibly think these things, on my worst days I simply cannot help it. I can’t tell you how shitty that makes me feel either.

Of course many ME patients get cancer as well and endure years of gruelling treatment only to still be ill at the end of it. Of course I am immensely grateful that I don’t have cancer but please don’t mistake ME for being the easier option. There are many terrible illnesses that I will hopefully never experience, but telling me to be thankful for conditions I haven’t got won’t make what I have got any more bearable.

So this ME awareness week, if you know someone who has ME (or any other chronic condition) whatever its severity, please be aware that the prospect of lifelong illness is a difficult and frightening one. Even if these words enrage you to the point that you never speak to me again, please speak to them, let them know that you care and do them the courtesy of taking their illness seriously. And please don’t forget that their family and friends will be suffering too.

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47 Responses to A Reluctant Confession for ME Awareness Week

  1. saxoma says:

    Dear Sarah My heart goes out to you – across the ether by email but still goes out to you. You are a precious child of God and while we don’t understand how you have been afflicted I can offer to pray for you – as I have always prayed for your whole family. Much love as always Serena

  2. triciaruth says:

    I don’t think that these feelings make you a horrible person – it shows that you still have a lust for life and if you still have that then you haven’t given up. I pray that your symptoms will improve so you can start on a road to, not a cure as there isn’t one, but giving ME a bigger arse kicking than it is currently giving you and some form of recovery.

    In the depths of my worst symptoms – only able to move from the bed to the sofa and back (through will-power/stubbornness and with extreme difficulty; having to ‘bump’ down the stairs and crawl up them again), to sit in an almost vegetative state as I was too tired to read or watch tv and sleep was illusive – I often thought it would be easier if I was dead because even this shell of an existence was so damned HARD. Then I would think of all the things I still wanted to do and, on balance, being alive was preferable because where there is life, there is hope.

    • Thank you triciaruth. Without hope of better things to come I think many people would find this illness unbearable but it is amazing how hope stays alive in even the most desparate circumstances.

      There is a big difference between actually wanting to die and just wanting the pain and sickness to end. Even when I have thought that death might be preferable, all I have ever really wanted is to be well again.

      I have lost count of the number of people (with so many different conditions) who’ve admitted to similar feelings but have never felt they could share them for fear of being seen as a terrible selfish person.

  3. Pingback: Counting Our Blessings: ME Synchroblog Part II | hidden courage

  4. The Femmetastic Feminist says:

    The comment I have gotten when I talk to people about my chronic pain is “we’ll, it’s not like you are in a wheel chair”. But the truth is, that some days I would much rather be paralysed. I can’t sit down without pain, being pain free but stuck in a wheel chair seems preferable at times.

    • Even being in a wheelchair with chronic pain/illness isn’t enough of an excuse for some people as healthy wheelchair users are able to live full and active lives. A medical student once asked me whether I would permanently trade the use of my legs for perfect health. At the time, being completely bedridden, it was a no-brainer. Being in a wheelchair wouldn’t stop me working, exercising, having a social life, starting a family or most of the other things currently impossible to me.

      • The Femmetastic Feminist says:

        very true. I feel as if I need to constantly explain my pain/illness and justify my inability to have the same lifestyle as pain-free healthy people.

  5. E. Milo says:

    You are not alone, you are not a selfish person and you shouldn’t feel shitty. Maybe I should be more tactful, but I’ve often wished for ANY other chronic illness except the one that makes you sicker when you exert energy. ANYTHING would be preferable. I could deal with ignorant doctors and isolation and pain and loss and all of it if I just weren’t terrified to DO TOO MUCH. I’ve admitted on my blog before: when I got the body CT scan, I hoped they’d find cancer. When I got the brain MRI, I hoped they’d find a brain tumour or MS lesions. I would choose no legs and no ME ANY DAY over this disease. And, unfairly to all who love me, I have many many times said I’d rather be dead. And it’s true- it’s not melodrama. The only thing that keeps me going is that things might-and do- change. One of the cruelest jokes of this disease is how difficult it is to explain to people. Get rid of that friend, please. And know you’re not alone.

    • That phone call several years ago was the last time I ever heard from that friend anyway (although to her credit she carried on phoning a lot longer than most other people did, at least until she learned why I was sick). It sounds like you’ve had a very tough time of it yourself. Thank you for your honesty.

  6. starrystez says:

    I understand. I’m housebound with M.E and have been ill for most of my adult life. It is a really devastating illness and the lack of understanding makes it even more painful to deal with. I can’t wait for the day the medical profession realise what they’re actually dealing with.

  7. eleanorjanebirdy says:

    Lord above, some people shouldn’t open their mouths! Saying ‘at least you don’t have…’ or ‘at least…’ anything really is Just Not On. How about a post about what to say/do when someone’s chronically ill? That could be useful for a lot of people…

    • Thanks for the suggestion. I intend to write about what to say/do in the not too distant future. Writing is quite a slow process with severe ME though so it may take a while. Watch this space…

  8. This post really struck a cord with me. Every time I have a blood test done I secretly hope they will find something wrong, cancer or otherwise, that is known about, accepted and treatable. It makes me feel a bit sadistic or something wishing something else was wrong, but so be it. It’s the reality of living with ME / CFS. You do not need that friend and you’re not alone. Don’t feel shitty for thinking as you do, you are not the only one who thinks that. Trust me. This post really did strike a cord and I’m going to reblog it on http://myjourneythrume.wordpress.com/ hope that’s okay! Jess. P.s Thanks for the like that led me to your blog, I look forward to following you from now on.

  9. Reblogged this on my journey thru M.E. and commented:
    This post by Sarah at Dead Men Don’t Snore really struck a cord with me. Although I thankfully haven’t had the same experience with a friend as Sarah describes, I have many times wished when having yet another blood test that they find something tangible wrong. Something that is accepted, well researched, actively treatable and known about both by the public and the medical profession. It may seem a bit wrong or sadistic even to think like this, but sadly the reality of living with ME / CFS makes it hard not to feel like this sometimes. Hope you enjoy Sarah’s post and please do check out her blog too.

  10. fibrofaery says:

    😦 I’m so sorry your friend treated you like this, I’ve had similar experiences with some of my friends and the hurtful things they’ve said really play on my mind.

    Many times I’ve also wished that I had a ‘proper’ illness too. Not that I want Cancer or anything awful like that, I just want people to stop making nasty comments and start understanding that what I’m going through is real!

    I really ♥ this post, as I can relate to everything you say, big hugs! x

  11. Great post, thank you for sharing. 🙂
    I agree with everything you say and it’s very encouraging that we share the same views.
    I’ve only been diagnosed with ME for 5 months and I’ve already felt all the emotions you mentioned.
    We’ll keep on fighting somehow. 🙂

  12. Reva says:

    Thank you for this brilliant post. It sounds like it’s struck a chord with many of us. I think we’ve all had those moments that we’ve hopes it was something else. I myself spent a week hoping my coeliac blood tests came back positive. I knew it also meant a chronic illness but at least it was one that could be managed, and with dietary changes I’d feel better in a few months.

  13. Rebecca says:

    Thank you so much for your honesty. I admire your vulnerability and courage. I am just turning 22 and was diagnosed in January with CFS/ME and have hoped for some abnormality with every test they have done since the beginning of my symptoms. I know I have not had it as long as you or as severe but I can relate to how you are feeling and very much appreciate you sharing this. It gives me comfort to know that others have thought they would rather have something as horrible as cancer also. Praying for continued courage and strength for you to continue to share as eloquently and powerfully as you do. Thank you again, Rebecca

  14. Jackie says:

    I totally know where you’re coming from as my diagnosis was CFS for 4 years, then POTS, and now a doctor is suggesting CFS AND POTS. My opinion is something else entirely is causing it all. Anyways, it’d be nice to know my prognosis even if that something was “you’re going to die” I’m not saying I’d be happy to die, but at least I’d know what to expect. At least people recognize the fact you’re going to die as a loss, as if the loss of living life while you’re alive isn’t a big deal. As it is now, I never know how to expect doctors or other people to react to me. I don’t know if I should hold on to hope I will be better someday or if I should work on acceptance…. When I see new clinical trials, I can’t ever know for sure they’ll be funded enough to be seen through to the end. Hell, I don’t even really know what’s wrong with me! I’m lucky in that I can’t think of a single member of my family who is not sympathetic, understanding, and wanting to help. However I feel very unlucky to have an illness with so many unknowns few people are interested in answering.

    • I agree that the not knowing is one of the hardest parts of being ill. If doctors could tell me that how I feel now is the best it would get for the rest of my life I would grieve for the life I will never have but could get on with making the most of what I’ve got, and potentially take risks that I can’t currently afford to take in case they jeapardise my chances of future improvement.

  15. tiredtechie says:

    Word. I groan inwardly whenever someone cheerfully says to me “You seem to be getting better!” No, it’s just a good day, and a swallow does not a summer make. It is really hard for people to understand a disease that doesn’t kill you but never goes away, even though there are a lot of them out there and most people will get one eventually. I kind of feel sorry for the blissfully healthy because they will likely have a rude awakening some day, as we already have. Chronic illness was the furthest thing from my mind before I got sick. I was offered disability insurance once and refused on the grounds that I took good care of myself! It’s funny now but really I was quite clueless, so I can’t blame other people for being clueless too. But I guess that’s why we need more awareness, so thanks for the blog post! 🙂

  16. Sally says:

    Thank you for the kind comment on my ME post – which lead me to your post here…. So honestly true! Mostly I have been treated with great care and concern by my family and friends…. but there are always those one or two who just don’t get it, but think they do!
    I’ll follow your blog now too. 🙂
    http://sallysewssometing.blogspot.co.uk/

  17. The Unorthodox Dolly says:

    I have never met you, and yet you have shown an understanding of my situation in a way that even my closest friends probably could not. Similar thoughts have often tore me up inside, but knowing I’m not alone is incredibly comforting and reassuring. I thank you whole-heartedly for having the strength to write this post and please know how refreshing and helpful I found it!
    Thank you again and all the best with everything,
    The Unorthodox Dolly ❤ xxxx ❤

    • There are so many things I have thought and felt over the years that I could never admit to because I thought I was the only one to feel that way. Over a decade of illness however I have learned that many other people have similar thoughts but rarely feel able to speak about them. One of the reasons for launching a blog was to let other people know that they aren’t alone in thinking these things and its OK to feel this way. I’m so glad you found it helpful. Thanks for your contribution.

  18. Sarah says:

    I was just having this exact conversation and explaining feeling this way with my boyfriend a few weeks ago. I totally completely understand and agree.
    Btw, I have found that for me there are significant amounts of heavy metal poisoning at the root of all this, having created central nervous system damage. I’m going through a nutritional program that lets the body sort all the imbalances of metal and nutrients and heal itself. and as slow as it is I am seeing vast improvements over time. I know people who have recovered from cfs, fibtomyalgia, and Addison’s diagnoses, as well as other adrenal focused issues on this program.
    It might be worth looking into.
    Let me know if you are interested, I can tell you more.
    Thanks for sharing your journey. I found you while looking up NLP for chronic illness.

    • I think the programme you refer to is very similar to what I’m already eating due to various intolerances caused by the ME but thanks for the suggestion.

    • E. Milo says:

      I’d love to know about the diet programme you are on for heavy metals!

      • Sarah says:

        Hi there E. Milo. It is called Nutritional Balancing and I can’t explain it well right now as I am really hungry. Lol. But didn’t want to leave you hanging another day. It’s been really amazing and just , really, a total revelation as to why I have had many of the health and emotional issues I have had all my life that no one else could explain to me.
        It uses hair tissue mineral analysis to test for metal toxicities and nutrient deficiencies. And then lots of supplements to bring all the imbalance back into balance so that the body gains energy and has the power to heal all kinds of issues. In a nutshell. I guess i kinda did just explain it:) It seems that many suffering with CFS or adrenal fatigue who are not able to recover with the typical treatments of herbs and vitamins have severe deficiencies or copper poisoning or some other metal(s) (much easier to acquire than any conventional Dr would ever know) at the root of it.
        You should check out a book called Why Am I Always So Tired, to learn more about copper and adrenal issues. It’s short, informative and like 1 cent on Amazon.
        You can learn more about NB at these websites:
        http://nutritionalbalancing.org/intro/
        http://www.arltma.com/HairAnalysis.htm
        http://www.traceelements.com/
        http://www.tvernonlac.com/
        Really I could go on and on with info and great practitioner recommendations. It’s also really affordable. We have a FB support page as well. Let me know if you want more info.
        Blessings!

  19. Tanya Marlow says:

    I’m late to the party, but this is brilliant.

    I think most people who’ve had really severe M.E. can relate to the ‘I just wish I had an illness where I was going to get better or be dead’. I can’t quite believe the crassness of your ‘friend’, however. Even allowing for ignorance, that does seem ridiculously insensitive.

    Sending you much love.

  20. zebraboo says:

    This struck a chord.

    This is why when someone recently said ‘Don’t you just bloody hate cancer?!’ I could vehemently respond ‘YES.’ (but not at all for the same reason as the questioner.)

    • I understand how you feel: cancer is the illness against which all others are measured, and not always fairly.

      I hope no one with ME would deny what a terrible illness cancer is or begrudge a penny of the money spent on searching for a cure, but there is no consistency regarding the severity/prevelance of an illness and the funding it receives. Until you experience the health and welfare systems first hand, you don’t realise just how much more priority is given to ‘popular’ conditions while others are stigmatised and ignored. Like most people I assumed help was distributed according to medical need regardless of the nature of the diagnosis: how wrong I was.

  21. Stephanie says:

    You have articulated this so well. My dear sister, who knows and loves me better than anyone on the planet except for my husband, has fought and beat cancer twice. It is horrible and I hate all that she has gone through, and continues to go through, as a result. Yet through the majority of her treatment she was able to do more than I’m able to do on “normal” days. I’m thrilled that she’s in remission and back to living life to the fullest…but nearly every weekend I get a cheery email asking what my plans are and telling me about hers. My answer is always the same (“I need to rest” or “It depends on what I’m up for that day”) as is hers (‘oh that’s too bad! hope you feel better soon!’). I’ve had CFS since May ’87, and in a relapse now for three years. How can she still not get that I don’t get to have plans?! It’s hurtful and frustrating. I think the vocabulary for this condition is inadequate. “Tired” for someone with CFS/ME is an entirely different beast than it is for the general population. This is unrelenting. You cannot “push through it”.

    • Thank you so much for sharing. Sounds like you and your family have been through a lot. I am glad your sister is in remission but it must be hard to want so much for her to be well while at the same time wishing that you could do even a fraction of the things she can. Your story highlights so well the problems ME sufferers face. People don’t understand how someone can be ill for more than 20 years, not die but not get better either. I have been told by some ‘friends’ that if I were really as sick as I claim then doctors would be doing something, not understanding that there isn’t anything doctors can do because governments are not funding biomedical research into ME like they are for many other illnesses especially cancer. In the meantime, the more patients attempt to push through their symptoms to have a semblance of normality the sicker they get.

      • Stephanie says:

        “In the meantime, the more patients attempt to push through their symptoms to have a semblance of normality the sicker they get.”
        Yes! The more you try to push through, the sicker you become. How sad that it is in some ways easier. Living within my limits fairly consistently allows me to function at about 40-50% of a ‘normal’ person, for which I am thankful, but looking too well means the misunderstandings with other people and doctors is even worse. ME/CFS doesn’t behave like other illnesses, so it doesn’t make sense to people who don’t have it. You’re right that we need more research.

  22. Anne Dean says:

    Well said.
    I agree with every word you say. And it is a relief to see somebody else feel this too.
    I too have read books about people with cancer, looking for some inspiration on coping better. And often felt envious of how much the person was managing to do (compared to me I mean). And, even worse, also jealous of emotional support they got from people in their lives.
    With CFS & ME there is very little support. This was one of the reasons I started my blog – the isolation.

    • Yes, the debilitating nature of ME mean that blogging and online forums are often the only way patients can get to know/share experiences and advice with other sufferers. It is such an isolating disease.

  23. I KNOW this! So many of us suffer the same with different conditions! My sister has been diagnosed with MS for 14 years. She has a degree in dentistry and retired through ill health. On a visit to a Job Centre, she was asked a] when her illness would get better and b] would she like classes for reading and writing skills????? My husband has a chronic back condition, inoperable and we live with the misunderstanding all the time, comments like “my brother had that, he went to a pysio and it was cured” and we always live with the isolation!! Thank you for this post.

  24. Thank you so much for your open and honest article. I do not have ME but I have a dear friend in Canada that suffers from CFS and other maladys, so she has shared with me some of what you’ve described, about people not understanding her limitations. I’m so sorry for this struggle you are going through. May God bless.

  25. juliasarahelizabeth says:

    I posted a week or two agao about how impotant it is to speak to those who are chronically ill. Many times ppl pray for us, but how are we supposed to know? We aren’t mind readers. Chronically ill ppl experience constant stress to our bodies- pain, lack of sleep, even infections. These problems can cause depression or add to depression. We need encouragement. Anyway, i had also previously told my health story. A woman i have known for many years, although well intentioned, made a comment on my fb page, “Julie, we know God can heal and I am praying for you to get better soon. I know the drs can find a cure.” This woman is one of the most kind hearted ppl you will ever meet, but it did surprise me. I have arthritis in my feet and lower back, degenerative disc diesease, as well as several syndromes and auto immune disorders. As far as i know, the word degenerative means, it ain’t getting better. Arthritis is not one of those this from which you recover. The only healing i expect is when i am in Heaven and God wipes away all tears. Thanks for writing this post! Reading it made me feel like i am not the only one experiencing these feelings.

    • Your comment about prayer is one I very much identify with. I know my old church were praying for me when I first became housebound but seven years later I have no idea whether they still are praying, whether they ever talk about me or who still remembers me because only one person from the church has stayed in proper contact and she has no idea what I will or won’t have heard about.

      I believe God can and does heal but he doesn’t always heal everyone, at least not on this side of the grave. The thought of being pain free one day when I see God face to face is the one thing that keeps me going on days when I would otherwise be overwhelmed.

  26. mickcgorman says:

    The day after I was diagnosed with Epilepsy, one of my brothers said “it could be worse” all I could say in response was “how” facing another lifelong condition with no prospect of a cure is very hard to accept.
    Very good posting. 🙂

  27. What a great blog. Love it!

  28. hubertwrites says:

    excellent post!!! I have chronic fibromyalgia, have suffered it all my life i get every word you said and whole heartedly agree

  29. Claire says:

    I’m very late to the party 🙂
    Thank you for this post which is very frank and understandable. I do not have severe ME but only mild to moderate. And I too have said I would trade my legs for my health. To have unrelenting energy again would be amazing. To have no legs, but be free to do whatever I wanted whenever I wanted. …absolute heaven. To build my strength and stamina to wheel myself around. …as someone so once said do me….at least it’s not MS.
    We all feel and know these words you have written. Take care.

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