“Oh, I know how you feel…”

This is what I was I was planning to blog about yesterday. I remembered at 5am, and texted myself as a reminder. I are clever.

So, one of the reasons I have such significant social problems, is because I can’t really relate to most of my peers. I’m reluctant to use the word “friends”, since even though a lot of them are, many of them are not. In theory, my peers are other late-20’s, disabled, single mothers, but I don’t know any of them. So for the sake of argument, my peers in this context are the 50-100 people I know and socialise with.

Of course, very few of them are actually disabled, and the ones who are disabled, I don’t see very often, as naturally, they suffer from similar constraints to myself. So most of the time, when I socialise, it’s with able-bodied people. And 95% of them, possibly more… just don’t get it. Here is a list of things I have heard (in all seriousness):

1. “Isn’t it just all in the mind though? If you feel better on the inside, you’ll feel better on the outside.” I’m gonna knock this one out of the park right away – it doesn’t matter what mood I’m in, I feel unwell. Some of the happiest days of my life have been some of the most painful. When I am feeling happy, I have a significantly greater chance of overdoing it and forgetting my limits. Depression helps keep me in the box that my body has made for me.

2. “Oh, I know how you feel – I’m exactly the same after a big meal and a run/a skiing holiday/working a 70 hour week.” Sure you know how I feel. But guess what? I didn’t get to do anything fun or productive before feeling like this. Sure, you feel drained and sore after a 5-mile run. I feel drained and sore after walking the 8 feet to my bathroom in the morning. Not comparable. No matter how crap you feel after heavy activity or exercise, you’re still one up on me, because you know what caused it. I don’t. Ever.

3. “Have you tried this painkiller/that therapy/this diet? It worked for my mum/sister/cousin, who had cancer/diabetes/a nasty bout of diarrhea.” What a wonderful world it would be if drugs and treatments worked on every patient in the exact same way they work during clinical trials. I’m gonna let you in on a secret now: nothing, at all, has the same effect on 100% of the population, except perhaps cyanide poisoning and Simon Cowell. And beyond that, ME has a particular pathology which makes our bodies not respond to chemicals in the same way as normal people. Sleeping tablets keep me awake. Antiemetics make me queasy. Painkillers cause more pain than they solve. See where I’m going with this?

4. “Have you tried just doing more? I’m sure your body would get used to it eventually.” No, I haven’t tried. The first day I got ill, I thought: “I know what I’ll do! I’ll spend the rest of my life in pain, unable to perform simple tasks like making a sandwich or brushing my teeth! That sounds like fun!” I immediately ceased to have any interest in a life outside of my bed, and I’m content with that decision. Seriously? I spent well over a year, trying desperately to cling onto my life, and the harder I tried, the iller I got. The only thing that keeps me alive is realising that I only have a very small pool of resources compared to most people, and when they’re gone, they’re gone. If something exceeds my limit, I don’t even attempt it, because it will only make things worse.

4. “Why don’t you just take a taxi/hire a cleaner/throw money you don’t have at the problem?” I’m going to save this one for another day, because being angry about something is exhausting and I still haven’t had breakfast yet.

So yeah. Talking to my peers is hard. I know what people want to hear. They want to hear things like: “Oh, I’m fine. Ill? No, just had a tough week. Of course I’ll come hiking for your birthday.” What they don’t want to hear, and don’t understand is: “No, I’m not fine. Right now, I’m sitting upright, and have clothes on, and can probably manage to get to the bar for another glass of coke, but I will need some help getting to the train station later, and I’m probably leaving early, and you definitely won’t see me out again for the rest of the weekend, and quite possibly not for the rest of the month, if I’m lucky.”

When I first started getting ill, if someone asked me how I was, I would launch into a diatribe about everything I was going through, and I would keep going long past the point when my listeners eyes had glazed over and they’d started drumming their fingers on the table for something else to listen to. I wanted to be a crusader. I wanted people to know the pain I was in, in the desperate hope that if I had some able-bodied people on my side, that I might just have a shot at getting the support that I need. But I can’t be the only educator of the masses. For the most part, people don’t notice, listen or care.

Now, when asked how I am, my reply? “Same shit, different day.”

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~ by surprisingme on March 23, 2010.

4 Responses to ““Oh, I know how you feel…””

  1. Oh boy, say it! I wrote a couple of blog posts about not feeling part of the world anymore and about the nervy questions people think it’s okay to ask – but you have really said it!

    I wish I had the proverbial nickel for each time I’ve encountered what you describe. For what it’s worth – you’re not alone!

    • The worst thing is, the people saying these things don’t even realise what they’re saying. They have their hearts in the right place, but for some reason think saying things like this is helpful! It’s no wonder we end up feeling so alienated, I guess.

      Thanks for dropping by!

  2. Thank you for this post. As a newly diagnosed patient of CFS/ME – I am only beginning to hear these comments. Last night, I was told that a neighbor thinks I am avoiding them and couldn’t I just come out for a little while this weekend? The problem is, first finding the energy to make it out the door, then once I NEED to leave – hearing “oh your leaving so early? Come on you can stay a little longer”, and most important – how that hour will affect me later. I’m still working (full-time) and can’t get ANYONE to understand that I am barely capable of doing that (and honestly shouldn’t be – per my doctor), and there is no reserve of energy left for ANYTHING else. I have cried at night over the loss of my former life, and I have come to accept this new way – wouldn’t it be easier if everyone else could RESPECT what I have had to realize is the new reality?

    • It’s sad and irritating, but people in general don’t understand unfixable problems, and again, people in general tend to assume that if it won’t kill you, you must be able to cure it. Chronic illness is such a bizarre concept to those who don’t have it. One thing I left out of the list is when people see me out, and say things like “Oh, so you’re better now then?” No, I just got a day off, shut up and let me enjoy it!

      The best thing to do is learn to put yourself first, and stop worrying about who you offend. It really is their problem, and not yours!

      Take care, and thanks for dropping by.

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