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.