May 17 2009
I may regret this but here goes - Rant
I posted this elsewhere and had a quite a few emails & IM’s about it so I’m posting it in other places in order to hopefully help a few people and open peoples eyes up:
Since it’s ME/CFS Month and specifcally week this week it’s made me have a think about my situation and including the whole fainting thing. The below is based on my knowledge of things and how I’ve been treated.
I’ve told quite a lot people about my condition and the people most ignorant of it seems to be the Drs (although I’ve got a really good one at the moment). Like many things in order to get a diagnosis most people have to fight to get it and when I say fight I meant FIGHT. There are very few people that manage to get a diagnosis without fighting. It took me quite a few years to get mine.
What hapens after diagnosis? Mostly nothing. You can get referred to various places, there are a few ME/CFS clinics but I and a lot of others have not been able to access them. As well as the ME/CFS I had the fainting as well so first place I went was to evaluated by a Psychiatrist who told me that I obviously couldn’t be that ill as I’d made it to the clinic, doesn’t matter that I fainted afterwards or had to spend the rest of the day in bed, I’d made it there so obviously OK.
I’ve lost quite a few folk that I thought of as friends mainly because I didn’t go out and party with them as often as I used to. I became a drag because I fainted the whole time so I “ruined” thier night or I cancelled at the last minute because I just didn’t have any energy to go. It became easier just to make up an excuse not to go and isolate myself. Conversely there are people that were just aquintances that have become very good friends and there are also true friends that have stuck by me and helped me out innumerable times.
What’s the point in this rant? Well think about folk that you know that aren’t well or you haven’t seen for a while. As an aside just because someone looks ok doesn’t mean that they are. Do you know how often people with “invisible” illness get “Oh but you don’t look ill”? I do have to stop myself from saying “well yeah, but you don’t look like an ignorant bastard/bitch”
For many people having to explain their illness and how they live from day to day can be hard but for a lot of people The Spoon Theory cetainly does help. With illness like this how you feel can vary from day to day and even minute to minute. I know I can be haring about like a blue arsed fly for a day or I’m just too ill and need a week in bed. If you do know someone that has an “invisible” illness just a quick phone call can cheer up their day, just five minutes maybe arrange to meet them. Yes there is a chance they may cancel but it’s not like they are doing it on purpose just to piss you off.
I’m not wanting to start a chain letter thingy but if you want to pass this on to others please feel free especially if you recognise any of the above in relation to your life.
Sadly,you’re right,people only see what they want to see. I have a friend who has ms and when sometimes she is ‘off her pins” as she say’s people say ‘oh your having a lazy day then’ as for now she is lucky in the way , she’s still able to get up and go:Also people are often “great friends” when you are in good health,as long as your door is always open,plenty of food and drink for them etc;but as in hubby’s case,once he fell ill,the door was still open to them–they could still come and drink but did they??? except about 10 or 12 it was a case of “he’s ill we don’t want to know or we are afraid(cancer is very contagious, of course); I think its down to ignorance and yes that ’s me provocating again!people who have an illness,whatever it is ,THEY are still person-they haven’t changed!
I’m afraid that seems to be par for the course with ‘invisible illnesses’, isn’t it … But I would go further, and say that the reactions you describe are confined to a sub-group of illnesses which are difficult to define, aren’t they …
Nobody thinks that a paranoid schizophrenic is ‘putting it on’ or ‘not trying hard enough’ … or a manic depressive …
But this group can be seen to include people with bad backs (probably due to jokes made about same, and the few people who exaggerate their condition), people with depression, people who claim disability benefit, people with ME especially, presumably because it affects people in so many different ways, and children with ADD ADHD and the plethora of syndromes like Aspbergers, which are so easy just to think of as ‘excessively naughty’ …
Unfortunately, its human nature to think the worst of any situation, and some people just love to think that a person with ME should just ‘pull themselves together’ … and there’s nothing you can refute that view with, because there’s nothing concrete you can ’show’ to them to prove they’re misguided …
And as you said, this behaviour is not limited to lay-people, it also flourishes amongst doctors who have an empirical bent, and need to ’see’ proof …
The best of luck to you, from me, with your condition, mirlnlass … :- )
Good for you!
A bad back is another invisible illness, disregarded by all who have not suffered the debilitating pain that constitutes a genuinely ‘bad’ back. But at least a bad back sufferer has something of the ‘invalid’ (used with some caution) about them, whereas ME is truly invisible with no physical manifestation apparent.
There’s nothing wrong with having a rant. That’s what your blog is for Mirlnlass, well strictly speaking your blog is for whatever you want it to be for: to vent your frustration when you need to, and to celebrate when you have something you want to, er, celebrate.
I do hope the friends you’ve got make up for the lazy ones who can’t be bothered to find out the limitations illness places on you, and respect that!
Hope you get some indication that awareness even some degree of understanding may be on the increase…even if slow in coming, I suspect it is………RJG
I say - Hurrah. Good on you girl.
Rants are good - it’s rants that make people think and change. I sometimes think we don’t rant enough. Keep ranting - why not rant in the direction of your local paper or radio station and ask for (or offer to write) an article/interview on what it’s like to live with such an ‘invisible’ illness as you have with us.
I guess from your blog you’re not after sympathy but just fair treatment. So why not rant to your MP.
In reponse I also hang my head at the times I’ve not given more time to checking others are okay and perhaps need a chat for a few mins. Thank you for making me think. xx
Wow you summed up exactly what I’m facing/battling right now! A doctor that doesn’t believe in the condition and the small mindedness of others - they should try it for a few ‘bad’days and see how much fun its not!
Thank you for your rant - it made me feel less alone!
I think that ‘true friends’ do care, but its the fair weather ones that fall down. You are brave to blog about this! I hope those who have doubts read and understand … but people being people most wont.
Like Carol my husband died of cancer and the number of male friends who found the courage to come and visit fell to as many as we could count on the fingers of one hand, but they did talk about things of interest to him. Many female visitors [some I sadly could put into the nosey parker brigade and who relished imparting the news around town how ill he looked ... Good God, he was dying, did they expect robust health?] talked about nothing, just wasted our precious time.
Good luck mirlnlass … one true friend is worth a dozen fair weather ones.
I’m so glad you’ve found “The Spoon Theory”….it has been a great help to me in explaining my RA to people. You will find that true friends will always be there for you and those other people……well it takes a while to get over the hurt…but you will learn that they really weren’t “true” friends and so there is no point in using your limited supply of energy to worry about them. As mentioned in others comments….one true friend is worth dozens of fair weather ones.
Its the same with depression - a lot of “yeah, but your not ACTUALLY ill”’s
Dicks!
you know what i think about how you do in this mad ignorant world anyway, but good for you again for saying it
xoxoxo
Hi, I’ve had ME/CFS/PVFS for 11years now. I think that the ME part of my illness, is better now, but it did a lot of damage to me, both physically, and mentally. I did a weblog posting about a Bull In A China Shop, the Bull being the ME, and I was the China Shop, it is possible to get our Bulls out of our China Shops, however they do leave an awful lot of mess behind, and some things may never get better.
I wish you all the best of luck, and hope that your “Good Days” will outnumber your “Bad Days” very soon. Take care and if you ever need someone to listen, or read an email then contact me.
Cheery Tws…
If they can’t see it it ain’t there
Good rant mirlnlass. There’s a lot to be said for having a ‘real’ illness, it saves a lot of bother. Have you thought of wearing a fake plaster cast while out and about? I bet the reaction would be different!