Saturday, 11 June 2016

M.E. On: Have You Tried?


I'll admit I thought twice about posting this. Maybe even a third and fourth time actually. I've realised while I have an opinion on many things, I don't really like confrontation or causing conflict.  So, I knew talking about this would ruffle a few feathers, maybe hurt some feelings (even though mine are hurt every time this happens!), but it's not directed at any one person.  If you suffer from a chronic illness like M.E. or CFS, you'll probably be nodding at your computer screen reading this, others might not realise this existed or that it was an issue, so I'll try and explain it as best I can.  Though this letter (pictured below) probably illustrates it far more eloquently than I could. Someone gave it to my Mum after ripping it out of a newspaper insert, thinking it related to me. Despite liking the person that did this, the second my Mum said "oh I have a newspaper clipping for you..." my eyes rolled. Here we go again, I thought. However I read it and as I got to the bottom, I fully expected to see my name as the signature! It sounded exactly like something I would say or my inner thoughts at least (remember I'm too timid to voice it out loud). It really resonated with me and while I'm glad to hear I'm not alone in fielding this advice, it's sad and annoying it's so commonplace.

You have no idea how many people, usually strangers surprisingly, say "have you tried...?" followed with anything from what you should or shouldn't be doing, painful "treatments", costly treatments, telling you how to eat, seeking alternative therapies or just really "out there" random things. It usually goes like this. Have you tried eating only red M&M's, standing on your head while singing the national anthem? Worked wonders for my cousin's, husband's, friend's daughter who'd had M.E. for a week. She was cured within 3 days. Back to normal. Well actually better than, she's climbing Everest now, barefoot with a polar bear strapped to her back. Oh and she met this amazing guy, they got married and she's pregnant with triplets. Amazing!! Yeah, bloody brilliant, pass the M&M's!!!

Obviously that's a slight elaboration (though sometimes not by much), but that's the general feeling. It worked for so and so, so it'll work for you, if you're willing to try. There are three main reasons why I object to these "suggestions". One, for M.E. there is currently no cure. NO CURE. If there was, every doctor in the country would give it to their patients. They wouldn't see you suffer, when their job is to help you. My doctor has repeatedly told me he feels like he's failing me because I'm coming to him for help and he's not helping me.  So any suggestion of a "have you tried" is not going to fix me. You don't know more about my illness than the guy with M.D. behind his name.  You certainly don't know more about me than I do.  Often these recommendations involve a massive lifestyle change or are painful or further limiting of what you're currently capable of.  With 0% chance of curing you, remember!  There is a small chance it could help you, however conversely it could actually make your life and condition worse or at the very least, you extremely unhappy (when you're already dealing with a shitty disease). So trying anything new is really risky and especially when it comes from someone who knows very little about you.

Secondly, M.E. is a hugely complex illness where sufferers fall into different categories and within those categories, there's even variety in how it affects a person (I'll maybe talk more about this another day). Therefore you can't have a 'one size fits all' approach. It's not a broken bone that can be put in a cast, with x weeks to heal, then a full recovery after so many weeks of physiotherapy. It just doesn't work like that. So the "have you tried" that works for Auntie Mary isn't going to work for your friend Billy. They could present with different symptoms, have suffered for different periods, they might not have contracted the illness in the same way and of course could have other medical issues outwith the chronic fatigue.  Do you really want to be the person with a basic knowledge of the illness to suggest something that could possibly make them worse? I certainly wouldn't.

Lastly and I don't know if this is just me, I actually get slightly offended when faced with a "have you tried", especially if the person is rather persistent or forceful about it (and there's been many over the years). That's the reason for me writing this post, because unless it's directed at you, I'm not sure anyone would realise it's actually quite rude. Often they get offended if you lack enthusiasm for their idea or don't follow through with one of their suggestions, which is ludicrous considering you never asked for their advice in the first place. It's MY life. It's me that has to go through whatever you're suggesting and/or pay for it, with little chance of it helping and no chance of it curing. Like the article above, I've accepted that this is the nature of the illness.  Yes it's shitty, yes it sucks that there's not enough research into it and it absolutely blows that there is no cure, but why won't you accept that?

The other person sees this acceptance as me not trying hard enough, not fighting, giving up and even not wanting to get better. That's downright hurtful.  Of course I want to get better, of course I don't enjoy this crappy existence, but I have to be realistic and weigh up whether something is going to make me so unhappy or hurt me more and whether that's worth going through to perhaps only somewhat ease one area of concern for me. If it works at all!  When you follow this up with "could you not just try it?" it becomes really awkward and by this point I'm bloody seething on the inside, but am too polite (or tired!) to argue my point (and to a stranger, don't really see why I should).

It's not just the sufferer that feels this way, their family also get continual "have they tried" and it makes them feel like they're failing, that they're not willing to 'force' me into trying this new therapy. I know my Mum and sister tend to say "she's tried everything" in the hope of shutting them up! Now I absolutely reiterate the views at the end of that article, that I'm sure you do mean well.  I'm sure you also feel utterly helpless and perhaps knowing there is no cure, makes you want to find anything that will help, but as I've shown above it's actually dangerous to meddle without knowing the full story or having a complete medical history of everyone involved.

The inference is also there that it's somehow a self inflicted illness or that you could get better, you're just not willing to try it.  With a disease already misinterpreted by many as simply being lazy, this is the ultimate slap in the face.  Red rag to a bull!  Could you imagine walking up to someone you barely know who has a broken leg and saying "Have you tried drinking 2 gallons of milk a day? It's clear you broke that bone because you lack calcium, you need more dairy." You just wouldn't do it, so why do you feel a need to interfere in an illness you either are not suffering from, know little about or very briefly thought you had?  It's disrespectful and having held this in and politely nodded in agreement for 14 years, I fear one day I will just absolutely lose it and explode and it won't be pretty.  I feel guilty before I've even published this post, just on the off-chance someone is going to take it as a personal attack and be hurt by it.  Which is silly, because it's my illness and not about you at all, so I shouldn't have to worry about protecting the feelings of some random in the street or my friend's drunk cousin who insisted she'd have me on my feet and working in London by the end of the year!  

All this aside, I do find it interesting hearing what has and hasn't 'worked' for others, usually through close family members or friends.  I also take an interest when someone tells me what worked for them, without any pressure to try it myself.  Discussion is healthy, imposing opinions isn't.  Random strangers at weddings appears to be my most popular way of attracting unsolicited "advice", with no thought to the fact this is the one time I've spent out of the house in months and therefore not the place I want to thoroughly discuss and highlight my condition.  I've been stopped in the street, had strangers discuss it (loudly) on public transport, it's come from friends of friends, emails, snippets given to family members and people who know little more about me, than I'm the "girl in the wheelchair" or "one with M.E" and feel they just have to put in their penny's worth.

Avoid being the one to instigate that awkward situation.  Don't go armed with your opinions to an unsuspecting and already extremely mentally and physically fatigued person and ambush them, when they never asked for your input and are too wrecked to fight their corner.  That's not a fair fight and not one they even wanted to be part of.  I don't tell you how to live your life, so you're not going to tell me how best to live mine.  In your opinion of course!  If you genuinely want to help, ask what you can do and say you'll be there if needed.  That's all.  

M.E. On are a continuing series of posts aimed at raising awareness of and detailing what it's like living with chronic illness (Myalgic Encephalomyelitis/M.E. or Chronic Fatigue Syndrome/CFS) through discussion of a variety of topics.  I was diagnosed in 2002 after contracting glandular fever earlier that year.  Unless otherwise stated, all opinions and experiences are my own.  If there's a specific topic you would like me to cover or you have any questions, please comment below and I'll do my best to address those in future blog posts.    

10 comments :

  1. My in-laws were terrible about this regarding my lupus, broken back and then my cancer. I was never well enough, I wasn't walking again fast enough, I was dying too inconveniently. I was a day out of major, dangerous surgery and got screamed at for needing help.

    I wasn't trying hard enough, according to them. 'Mind over matter' means my will alone should have made me better. When I went into surgical menopause all at once after surgery, that was dismissed as me being a baby (even though I basically lost all of my reproductive system and was left with only part of a non functioning vagina, and then the hormone changes hit).

    They eventually started becoming abusive and expected my husband of 20 years (a quadriplegic whose aide care i had to take over literally broke my back) to dump me. I was surprised that he didn't, and instead we had to cut off all family ties, leaving he and I (also in a wheelchair) alone.

    People really suck. Who would want us to get better more than us? We get told every day we are a burden!

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    1. That's really heartbreaking Sylv. People really can suck! I can't imagine going through all that and with very little to no support, it's sad. I do wonder if some people just don't know how to show their feelings and do so by saying/doing the wrong thing. I know my Dad has a tendency to get grumpy and yell when one of us are ill. He's concerned really, but just doesn't know how to deal with it.

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  2. I can well imagine the frustration from your frankly brilliant coherent and detailed explanations and description. It must be so horrible to be on the end of it. I've not experienced anything like that but a well-meaning friend asked me when I was going to have a baby 2months after I got married. I politely said I wasn't, not wanting to go into my feelings about having children, she went on at me for about 15minutes, basically saying I had to have one in various forms. I frankly could have punched her for her brazen and unwanted opinions. Just because she has 6children, doesn't mean I do. Anyway, I'm trying to imagine that happening on a regular basis because that x1000must be how you feel and that is something which is MY CHOICE, whereas yiu have NO CHOICE!!XX

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    1. Argh, it's so annoying. I wonder if people just don't think or realise what they're saying and how it can hurt. I'm probably making excuses for them.

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  3. I think I really understand what are you mean although I'm not so proud of my previous doings towards people in many moments.
    I really appreciate to read your personal experiences and what you've felt and thought through the things.
    I tend to not meet people so often or just limited people even if I get chance to meet.(due to my life issues as well)and on top of all that,people still not willing to have real talk so often.and I find it that is something I've been always missing,to hear someone's opinion and experience.therfore lack of knowledge with so many things.
    I've been thinking about the time you found out about your illness and how you found it out...
    I'd appreciate reading it if you feel like posting.

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    1. Thanks A, yeah I never properly finished my posts on when I found out I was ill. the last part was harder to write because it wasn't history, but happening and the way I wrote it kinda changed and I didn't like it and thus never finished it!

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  4. I know exactly what you mean. My ME is much less severe than yours, so people aren't quite so forceful with their misguided advice, but I also get it because of Fibeomyalgia so it's double the crap. I sometimes get several people tag me on Facebook in the same bogus article, and I know they mean well, but it SO tires me, and I don't have any spare energy to begin with.

    I feel for you. If I had a quid for every idiot on Twitter who follows me saying they're cured of ME and all they needed to do was do this juice thing at £50 a week I'd be in the Maldives sunning myself now. I know people mean well, but they actually make things worse. xx

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    1. I know and I always feel an obligation to look into whatever they're telling me about, even though I KNOW it isn't going to help. I just feel this need to do it, to show them I tried or else they'll think I'm faking the whole thing or not trying hard enough to get better.

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  5. Oh, I can only imagine how frustrating this must be for you. I've been undergoing tests to try and find a cause for my stomach pains for several years now and can hardly believe the number of people who are suddenly full of expert advice when I mention it. So I certainly don't envy you having to put up with this kind of thing 24/7.

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    1. I bet! I wonder if people feel concern and don't quite know what to say or how to help, so offer this half-hearted diagnosis/advice all the time.

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