Tuesday, 31 March 2015

What not to say to Sick People: A rough guide

Hello again!

After my last post on dealing with the dreaded You-Don't-Look-Sick-ers people have been telling me similar tales of things people have said to them in illness or hardship that have been difficult to deal with, so, I'd like to share some of the things you probably shouldn't say to people who are chronically ill, or even struggling with something else.

Before we start I'd like to say that the purpose of this post isn't to make anyone feel guilty or like they can't talk to someone with an illness, it's just a guide to help.
I know some people never know what to say or panic when someone wants to talk about something challenging, but often that can mean they can say something that doesn't really come across as they intended.
Everyone says things they don't mean and one slip up does not make you either a bad person or a bad friend. This is just about avoiding the situation entirely.
If you avoid these potholes, it'll help.

I've had all of these things said to me (or about me) at least once.
(I know that some of my friends will worry about whether they've said these things. You can message me and ask if it's going to put your mind at rest; I don't mind.
And again, even if you have, you didn't know some of these things bothered me and we're still talking, so it's completely fine.)

Now of course everyone is different, and often these things are only said in jest. But even if they're only meant to cheer the person up, it's worth bearing in mind that that's not always how it comes across, and it's best to be guided by how the other person talks (or even jokes) about their problems.
I joke a lot about my own issues, but it's usually to illustrate my frustrations in a more palatable way. I have never made jokes implying that having ME/CFS is easy, that it's not a real illness or that I don't struggle with it. Mainly because none of those things are true.

It's also worth considering that chronic conditions are still happening. 
That might sound patronising, but I'm aware that it's pretty easy to forget when it's not visible. I'm pretty sure I've done it to other people in the past.
But the point is that it's not something that's come and gone. 
It's still affecting that persons every waking moment, and although you might get to walk away from it later, the person you're talking to doesn't.

There's really only one person I know that can get away with most of these comments, and that's because of two things.
One, I'm fully aware that that's how they show affection. Sarcasm is basically their mother tongue.
And two, (and most importantly) I know damn well they take my condition seriously. They've asked me about it enough and done research off their own back because, and I quote, they "wanted to understand what you're going through better". They even check me when I say I'm okay with something to make sure I'm not just going along with it.
But even with them I have to remind myself sometimes that that is the case.

Generally speaking its best to avoid anything that might suggest that the problem they're dealing with isn't real, that you think they're exaggerating, or that it isn't difficult for them.
You would be surprised how many people don't believe you when you say you have a chronic condition, especially if they know someone else with it that can do more or less than you.
YDLSers are much more prevalent than you'd think.

If you're still not sure, the best way to think about it is this: "Would I say this to someone with a severe peanut allergy?"
Obviously severe peanut allergies can often be fatal which isn't the case in ME and some other chronic illnesses, but they're still legitimate health issues, so mentally using a Peanut Allergy Metaphor (PAM for short) will probably help.
In both cases, Bad Things happen if you ignore it though, so let's run with it.

1. "Have you tried_______?"

There's really two categories of this question.
The first is someone who's done some research trying to be helpful. They might say "Have you tried oxygen therapy? Because I read that that's helped some people with ME/CFS."
To be honest this kind doesn't bother me because the person is a. trying to help, and b. has clearly found out about the condition in question.
It does bother some people though, mainly because the answer to that question is pretty much always yes. We've tried most things and we're still sick and that's horrible.
I think maybe it makes them feel like the asker thinks they're not trying hard enough to get better or something. Or like on some level they want to be ill and that’s why they’re not better yet.
It also probably reminds them of the next type.

The second category is Unhelpful "Have you tried”s. Notice that capital ‘U’.
In the case of CFS, this question is usually along the lines of, "Have you tried doing more exercise/pushing yourself more?"
Considering that post-exertional malaise (the official term for Payback) is a pretty key symptom in ME, this is basically asking someone if they've tried not having the thing they have.
In PAM, that's, "Have you tried eating more peanuts?"
No. They haven't. Because their body can't process peanuts/exercise and Bad Things would happen.
What's essentially been said there is that the asker either hasn't been  listening to what the sick person has said about their illness, or that they don't believe that they're really, properly ill.
This is not only a bit insulting, but it can also make the sick person worry or feel guilty that they’re not doing enough, or the right thing, in order to get better.
In my case, this kind of question would often make me wonder whether I wasn’t as bad as I thought and was actually just frightened of doing more, so I would try to do more. 
As you can probably imagine, Bad Things swiftly followed.

If you want to talk about what can be done for the person, go ahead and ask, "Can anything be done to help?" 
Questions like that show concern and opens the floor to discuss options further. 
It also shows that you know that the authority on the sick persons health is the sick person.

I know that a lot of people want to help their friends and can feel helpless or like they’re not a good friend if there doesn’t appear to be anything they can do. That’s a really admirable thing. 
But just being there, listening and acknowledging the problem helps more than you probably realise. 
You don’t need to feel like it’s your job to fix us. We might not be fixable, so the best thing to do is try to accept your friend for what they’re dealing with and who they’ve become through that.
If they want more help, they’ll probably ask for it, and you can always check if you’re worried.

2. "Have you been tested for/Are you sure it's not _______?”

Again, not one that bothers me personally. But it’s another one where the answer is probably yes.
I’m not sure how it works with all chronic illnesses, but with ME/CFS a diagnosis is made by testing for every other possibility and then crossing it off the list. If you run out of things to test for then you have ME.
So if they have an official diagnosis of ME/CFS, then yes, they are sure.
People can find this one tough because just getting a diagnosis with ME is pretty bloody difficult. In fact, they might not even have one yet, despite being a textbook case. 
It took me seven months into my illness to get diagnosed and that’s considered FAST. 
Plus, again, loads of people don’t believe in ME/CFS so this question can make people worry they’ve got another non-believer on their hands.
One of my friends with fibromyalgia has only just got her diagnosis after struggling with it for 14 years.
A better question might be, “have the doctors agreed on an official diagnosis yet?"

One question in this category I do find frustrating is, “Are you sure it’s not just psychological.” I have a few problems with this.
Firstly, in the case of ME, yes. I am sure. There is proof it's a physical disease. 
If you asked a person with a PA if you thought their allergy was psychological, it would sound extremely silly.
I also spent a lot of time trying to convince my doctor that I wasn't tired because I was depressed, but was feeling depressed because I was so tired. This question is going to remind people going through similar struggles of that struggle.

Secondly, psychological illnesses are still illness and should be treated as such. Depression is an illness and that’s psychological.
The mind has a massive affect on the function on the body anyway so treating psychological issues as less serious doesn't really make sense.

And thirdly, although pretty much all chronic illnesses have a psychological component (apart from anything else, living with them is hard), someone saying “just” in regards to your illness kind of implies that you’re making a big deal out of something that doesn’t warrant it.
That brings us right back to potential non-believers.

3. "You just need to _______.”

There’s that “just” again; it sounds so dismissive.
Chronic illnesses are pretty complicated, both to live with and cure (if that’s even possible), so unless this sentence ends with “tell everyone who doesn’t believe your illness is real to take a long walk off a short pier”, the recipient of this comment is going to assume the asker isn’t taking them or their illness seriously.

4. "Everyone gets tired/sad/etc.”

That is absolutely true. But not everyone has a medical condition that means exhaustion/sadness/pain/etc is a constant, or near constant, state. And although many conditions fluctuate in their severity, even when it's a good day, it still feels worse than not having the condition at all.
"Everyone gets tired etc" implies that whoever’s saying it thinks the sick person is looking for sympathy or attention. 
But if they have a chronic condition they’re probably trying to reach out to you for help or understanding and this is not a very nice way to respond.

I have been both with ME/CFS and tired, and without and tired, and I can tell you from experience, ME/CFS is worse.
One of my friends with MS gets this a lot.

5. Get better soon.

Another that I don’t have a problem with (it's clearly kindly meant), but some people with chronic illnesses don't like this, because it's kind of the point that they're not going to feel better soon. 
Even if they do, it may take years to happen.
I guess if you’ve spent a while trying to explain that to someone and they still go “get better soon” at the end of the conversation, that’s going to grate a bit.

Maybe it's because I'm from a place in the world that regularly uses "alright" instead of hello. I'm used to certain phrases being used to stand in for other phrases.
If anyone says this to me I just automatically filter it into "feel as good as it's possible for you to feel as quickly as possible".

6. Count your blessings.

I agree that remaining positive is extremely important. It has a tremendous effect on your health and is very useful. 
But that’s what I, and others like me, try to do already.
I have a friend with ME who is extremely grateful that they can still work. In turn, I'm extremely grateful I'm not bed-bound. It's all relative.
On the whole I think I do pretty well at keeping my chin up.

Sometimes, though, we're not going to manage it. 
On those occasions we need the support of our friends, family, acquaintances, whoever.
Saying "count your blessings" is not only unnecessary, it doesn't acknowledge that it's harder for us to do than it is for a lot of people, especially if the commenter doesn't have a chronic illness or disability themselves.

It's also worth knowing that people with chronic illnesses are very likely to suffer from depression in addition to their illness. The sick persons condition might actually be depression.
In this case "count your blessings" is going to sound more like an unhelpful "have you tried”, because being upbeat is what they have difficulty with in the first place.

Other similar sentences include the milder "look on the bright side" and the extremely harsh "pull yourself together”. 
(Note: may not apply to hearty renditions of Monty Python's Always Look on the Bright Side of Life. Especially if accompanied by acknowledgement of the difficulties of doing so. And jazz hands.)

7. "At least it's not life threatening.”

Well, first off, some chronic illnesses can be. So before anyone breaks out this little gem, please check.
You're going to feel like a complete tool if the person turns round and says that it is.

In my case, I can’t say how extremely grateful I am for the fact that ME is unlikely to kill me. For a while at the beginning we thought there was a real chance I could have something that might turn out to be fatal, and finding out that it is astronomically unlikely to be so is an incredible relief. ME has, in a few cases out of hundreds of thousands, caused fatalities, and while that can be a little unnerving, knowing that these cases are few and far between helps a great deal.
That doesn't, however, make living with the illness easy. 

In the Crappy Things to Find Out Lottery, finding out you’re probably going to die is definitely top, but finding out you've won a debilitating illness that leaves you exhausted/in pain/depressed/etc for potentially the rest of your life is probably in second place. Third place max.
At best, when someone's (understandably) feeling low about that, saying “at least it’s not life threatening" is probably just going to make them feel guilty that they've been complaining, when others have worse things wrong with them. That’s not going to help anyone.

Also, I personally think there's a lot of confusion between life-threatening, and existence-threatening.
I exist. I fully intend to continue existing for as long as possible. It would be quite nice though, to do any of things that most people take for granted, that really make up living. Travel, see my friends, dance, go on a long walk in the countryside. Anything.
I use to take them for granted, and I can’t tell you how much I regret that. More than anything else, I want to live again.
So saying my condition isn't life threatening, frankly, doesn't feel particularly accurate.
And someone saying this can be annoying, especially when they can leave whenever they want and go do all the things I just mentioned.

8. "You're just being lazy/want the attention" jokes.

Considering the truly massive amount of time people with chronic illnesses spend trying to convince people (including various members of the medical profession) that they really are sick and that they’re not, in fact, lazy or attention seekers, these jokes understandably tend to fall pretty flat.
This is the main one that my one super sarcastic friend can get away with for the reasons I stated above.

9. "I wish I got to do nothing all day.”

This one is actually pretty hard for me to write about, because, although it sounds fairly innocuous, I actually find this sentence, and others like it, to be the most hurtful, even when it's said in jest.
Even though I don’t show it, the last two and half years have been the most difficult and painful of my life, and someone saying something like, “I wish I got to do nothing all day”, or, “I wish my mum cooked all my meals and washed my hair for me”, doesn't only not acknowledge that, it makes it sound like people with my condition are on some kind of holiday.
I told a friend about this once, and they likened it to telling a paraplegic person that “it must be nice not to have to do all that pesky standing up."

Statements like this one are actually why I decided I should write a blog; if people were misunderstanding my situation to the point where they were considering aspects of it enviable then I felt that I had to set the record straight.
I admit that, to some extent, these kinds of comments were my own fault; I wasn’t explaining the situation in a way that people could understand. But I am trying to rectify that.

I gave a very brief explanation of my average day in my first post, and it’s something I’ll go into more detail about another time, but the truth is that, yes, I spend at least eight hours a day doing nothing. 
I’m not watching TV, or reading, or listening to music, I’m attempting to literally do nothing. I lay down, shut my eyes and try to clear my mind or meditate for eight hours a day, every single day, and I absolutely hate it.

But even in that, I’m not really doing nothing; I’m doing something vitally important. 
By doing that I’m showing that I haven’t given up. 
Every minute of every day, I’m trying to get better, and so is everyone else with this bastard of an illness (although they may use different coping mechanisms).
Even if people aren't able to get better from their particular condition they're still trying to hold on with everything they've got.
So please, please don’t dismiss that.

Also, apart from anything else, saying something like this feels a lot like tempting fate.
I worry about my friends, who are generally pretty busy, getting this illness all the time, and I'm sure I'm not the only one.
Don't wish it on yourself, because I wouldn't wish it on my worst enemy.

Now I know this is a lot of information and it might seem overwhelming, but don't worry.
If you feel like you might slip up or have slipped up, just apologise.
You don't need to go down on your knees and beg for forgiveness or anything. 
"Dude, I don't think that sounded how I meant it to sound" will go a long, long way.
We like you. We're not going to chase you with pitchforks.
Besides, most of us would struggle to do that anyway.

P.s. In the interest of continuing the useful links tradition, here is a good (and much shorter) article on the above in the case of ME/CFS.

Monday, 30 March 2015

A Dilemma

Hello lovelies.

So after last weeks You Don't Look Sick post I had a lot of people sharing things with me where people had said something to them that had hurt their feelings.
After hearing so many I decided to compile them, along with asking a few more people about their experiences, adding my own and creating a "what not to say to sick people" guide.

The problem with this is that I was (and am) very concerned that reading it might upset people, which is not what I'm going for.
I don't think it will, because it's not just about me, but there is that possibility because it does include my experiences.
I also am fully aware that everyone says things they don't mean and that one slip up does not make you either a bad person or a bad friend. It's just about avoiding the situation entirely.

My parents argued that the people likely to be reading this blog are those closest to me and are therefore more likely to be alienated by the suggestion they've said something to upset me.
I did my best to explain the 9 different phrases most often used and why it's best to avoid them without sounding angry or accusatory, but as it is essentially a post about hurt feelings it's also never going to sound 100% happy. 

I sent the post to three of my friends to get their opinion on the post and how it came across. All of them were very supportive and said it didn't sound angry... but all of them immediately apologised for anything they might have said that might have upset me.
And those are all people who have never said any of the things included :s

So, I'm not really sure what to do now.
I thought the best thing route to take was to put it to my friends, do you want to read it, and would you be offended?
I want to explain the situation for myself and others but I also want my friends to like me afterwards!

I know there's no way of knowing 100% without reading it, so to give you an idea it's a bit like a less angry, expanded version of this aimed at all chronic illnesses bot just ME.

If you're okay with it and want me to post it then like or comment on the Facebook post linking you to this. If you're not on Facey B then comment below.
I'll look at page views vs responses and decide what to do from there.

Love your faces.

Monday, 23 March 2015

"You Don't Look Sick"

Hello again!
I am finally back and ready to resume normal transmission. It's been a bit of an intense month for several reasons. 

The first and most difficult of these has been the loss of one of my managers (when I was still working) and role-model, Nicky Boardman. 
He had been suffering from a particularly nasty type of cancer for the last couple of years and began chronicling his battle in the amazing blog Too Upbeat for Cancer. Unfortunately, cancer finally got the upper hand and he passed away not long ago.
He has not only been a major inspiration to me (this blog is pretty heavily influenced by his writing), but he was incredibly supportive when I got sick, despite his own far worse issues, and taught me how to stand firm (and laugh) in the face of adversity.
His conduct during illness and hardship remains what I'll always strive to emulate.
If you haven't read his blog, then I'd really, really recommend it.

It’s also now officially six months since I will was well enough to leave the house. 
I’d be lying if I said I wasn't having trouble dealing with that; with this kind of thing milestones feel more like millstones. But I’m hoping the return of sunshine will make things a bit easier on me, so that I can build myself up a bit more.

On a slightly happier note, in the realms of ME/CFS there's been big news that scientists have discovered that the illness that plagues over 250,000 people in the UK alone is, in fact, real!! Gasp!
As ridiculous as that may sound, there's been a lot of stigma around ME/CFS in the past so physical proof that it's not just psychological is pretty awesome. 
There's still a long way to go though.
Only last week my mum came back to me with a story about someone she met, whose brother sounds to me like he's got classic ME/CFS symptoms. When they presented that as a possibility to their doctor, he was told "you don't want to go down that route".
I'm pretty sure none of us would go down this route if we had a choice, mate. We'd much prefer something we could just take a pill for so we could get on with our lives. Unfortunately, that's not really how diseases work.
If that lady's brother reads this, firstly I hope you don't mind me mentioning the story (let me know if you do and I'll take this bit out), but secondly, and more importantly, go to another doctor or don't take no for an answer. If he's not willing to put his own prejudices aside to help you figure out what's wrong with you, then he's not a very good doctor and you shouldn't be trusting him with your health.

And, finally, there's also been this awesome open letter that this blogger wrote about people judging her while she struggles with her invisible illness. Good on you girl.

This leads me nicely round to my own experiences with The Public vs My Invisible Illness in the days when I left the house.
As you may remember, all those weeks ago I talked about how the balancing act of dealing with an illness (and not looking ill) can make things hard for people to understand.
This is especially true of strangers and can make things extremely difficult. It depends how I feel on the day (and how much of an obstacle it causes) as to how much this affects me.
There are days when it’s frustrating and you just wish people wouldn’t judge you so much, but, given that I have a mischievous streak a mile wide, most of the time I quite enjoyed watching people try to work out why I was using a disabled parking space as I sauntered into Tesco. 
They wouldn’t see what it’d cost me in energy later, but you’ve got to get your kicks where you can.

However, one thing that never fails to get my goat is the group of people I like to call the “You don’t look sick”ers. 
Now lots of people use this sentence (or ones like it), because, well… I don’t look sick, and that’s fine. It can be a little frustrating as a reply to me saying that I don't feel well (because me looking okay doesn't make me feel better, it just makes the balancing act all the more invisible), but on the whole I know those people are just trying to look for a silver lining.
But never has the old adage “it’s not what you say, it’s how you say it” been more apt.
Because when this sentence is said by the YDLSers it doesn’t come across as friendly concern. Instead it always has a slight undertone of disbelief that immediately makes you feel the need to defend yourself.
It’s something that is usually said by strangers, and it’s inevitably accompanied by a disapproving look of assessment, as if only your immediate death will convince them that you’re not participating in flagrant benefit fraud.
If you’re unsure who I mean, these are the people that tut if I use a disabled loo when I'm not using a wheelchair. Or when I am using a wheelchair but then get up for something, stare accusingly at me.

I don’t get it as much now, of course, because I don’t go out anywhere, but when I did I always dreaded it. 
For a long time I just used makeup to cover any minor signs (mostly dark circles, that range, depending how tired I am, from lavender coloured smudges all the way to Full Panda) in an effort to avoid the entire thing all together. But then I’d need to sit down in a shop or have the music turned down in a cafe and it’d come up again.
Unfortunately makeup just made the YDLSers even more suspicious, so now I only wear it to cheer myself up when I’m not going to see anyone.
(To be fair to them I’m an artist, and I’ve had bad skin since I was 13. I am very, very good at using makeup to make myself appear human. Or feline. Or like Benedict Cumberbatch. There are photos to prove it.)
But even when I go Full panda (which usually signals an energy crash) I just look hungover. 
An old lady once took pity on me during an energy crash on an outing and asked, in that particular tone that fondly pities the foolishness of the young, if I’d had a late night.
When I replied I was ill she leapt back as if I’d informed her of my personal involvement in the reintroduction of the bubonic plague. She was surprisingly nimble for an old girl.

By far the biggest problem that arises once you realise YDLSers exist and you begin to worry they’re lurking in every corner is this:
Explaining yourself to people, especially YDLSers, is really tiring, so you tend to start to try and alter your behaviour to avoid confrontation. 
It doesn't sound like a bad thing, but considering that I’m ill, it’s way more effort, and I shouldn’t really have to do it in the first place, it’s not really a good thing either.

For example, in the heady days of forty percent-hood, when I would travel up to London to see my friends, I would be so worried about people not being willing to give me a seat on the tube that I would carry a folding stool around with me. This was a bad move for several reasons:

  1. Carrying around a stool just means you use your energy up quicker… to carry around a stool.
  2. Everyone stares at you if you bring your own chair on the underground.
  3. Balancing on a tiny, rickety, three-legged stool in a moving carriage doesn’t actually allow you to rest, it mostly just changes the muscles you’re using while you try to stop yourself falling directly into someones crotch.
  4. Sitting on said stool puts your head at just the right level to allow it to collide repeatedly with grumpy commuter’s elbows. Who, as a rule, do not apologise for jabbing you in the temple.

I’ve got to say though, I do think I missed a trick by not taking the opportunity to set myself up directly in front of someone sat on a normal tube seat just to mess with them. I would have been directly at their eye level. 
I wonder how long it would’ve taken them to move.

When I finally get out of the house again though, I'm going to make a concerted effort to not let the YDLSers bother even on my most sensitive days.
If dealing with them has taught me anything, it's that it's their problem, not mine, and I don't owe an explanation to anyone. Plus, most of the time, it's way more fun not to give one.

Tuesday, 10 March 2015

The Standby Hedgehog

Hello lovelies,

Just to let you know, there will be more posts, but I've got a few things on at the moment, both health-wise and otherwise. I will commence posting soon.
If you've sent me messages or emails and I haven't replied, then that's why. It's nothing to worry about, just any extra things to deal with mean I don't have any spare energy for the normal things. All of that balancing stuff I mentioned last time.

In the mean time, allow me to introduce to you the Standby Hedgehog. He comes and hangs out and keeps things sorted for me when I'm working on other stuff.

Look at his little fuzzy tum.