One of my pet hates is people with chronic illnesses being urged to ‘fight back’ by others who have no idea what they’re talking about.
Am I supposed to feel better when someone looks at me with sad eyes, grasps my hand and tells me, ‘oh, you’re so brave, I just know you can fight this thing.’
Perhaps the media is partly to blame, when every third-rate ‘celebrity’ who is diagnosed with anything is featured in trashy magazines claiming they will fight back, not let it beat them, blah, blah, blah. Ironically, they usually end their not-so-exclusive interview with a coy plea for privacy.
How exactly am I supposed to fight back against MS? It isn’t going to go away. Oh sure, I could pay thousands for quack cures, immerse myself in healing waters, start meditating, follow a Beat MS Diet, howl at the moon. And yes, I probably would feel slightly better, just as anyone without MS would also feel slightly better following a strict, healthy regime. Isn’t it better for us to adapt to our new lives with MS rather than fighting the unfightable? It’s not about giving in to it, it’s about getting on with it.
There is a creeping sense of a hidden agenda embedded within this call to fight back. Anyone with an illness must resist being ‘different’ at all costs. We must strive to regain our ‘normality’, that which is acceptable to mainstream society. We must fight back against anything that marks us as being outside the socially acceptable norm and if we appear not to be fighting back, then we’re obviously not trying hard enough. How often do we hear, ‘Oh, she fought a brave battle’ or ‘she just gave up the fight.’
This kind of pressure only makes life with MS more difficult than it already is. The only thing I’m fighting back against is the discrimination that comes with having MS. Being sacked from work because of it. Struggling to find a new job because of it. The constant blank, disbelieving faces when I try and fail to describe overwhelming fatigue and the reality of living with a mostly invisible illness.
In the meantime, I’m sticking with Jack Osbourne’s philosophy – Adapt and Overcome. Interestingly, it’s his family who talk about fighting back, not him. Anyone who wants to make me feel guilty for not fighting back hard enough, stumble for a week in my shoes, then come and talk to me.
Great blog, you’ve absolutely nailed it there. The
Only time I can get across what fatigue is really like is to say ‘take the worst jetlag you’ve ever had, add a hangover & times that by 10. Now fill your clothes with wet sand & go for a jog’. Seems to get the message across, well sometimes anyway.
Thanks Darren!
LOVE your fatigue description. ‘Wading through treacle’ doesn’t really cut it, does it??
I got up at 7, now ready for bed again, lol.
x
I told my mum how great my scooter is and suggested that she might make use of one, given her arthritis which means that she can no longer do things she likes like walk round flower shows and gardens.
‘No, that’s just giving up’ she said.
‘No’, I said. ‘It’s enabling yourself to do the things you would like to do.’
In her mind she can’t be seen to be ‘giving up’, she must ‘fight’ against it. In reality, if she adapted and got herself a scooter she could continue her outings.
I can’t get on with all this ‘stiff upper lip’ nonsense, and the idea people have about ‘fighting back’ is the same. There is no fight. You either accept what is, or you don’t. And if you don’t you are in denial of yourself, as you are, which can only lead to trouble. My mum doesn’t want to accept that she is old and physically unable to continue as before so she is missing out, and is complaining she is bored! Mothers eh? 🙂
In your list of outlandish cures you include meditation. I am not precious about it at all, and never take offense when people don’t get it, and lets face it, it’s not like we’ve been doing it for long in this part of the world! But because I have benefited so much from my daily meditation practise I have to wave a little flag in it’s honour. The only thing I will say about it though is that it takes a fair amount of research and practise to find a method that suits, and there are seemingly endless numbers of traditions to choose from. Oh, and meditation can be entirely separate from any religion, or incorporated into any religion.
Ok, flag lowered now 😉
I keep in mind that other people cannot know my experience and I cannot know theirs. Their opinions are theirs and it is not my responsibility to hold on to them.
They can fight whatever they want, but I am with you, I prefer reality.
_/\_ 😉
Hi Julie,
That’s a brilliant point about your mum. So many people think that by not adapting to something, taking the stiff upper lip route, they are somehow stronger than if they accepted they needed a little extra help to live a better life. It’s not about giving in!!! Why fight back against something when it’s better to accept it, adapt to it and get on with life??
Regarding meditation, I’m with you on that one. Don’t know why it made my list, except to say that if anyone meditated, they’d feel better. As a homeopath, I know things like that can come across as off the wall. I’m tempted to replace the word with something else, but then no one will understand our comments, lol.
I actually have two books by my bedside about meditation and living in the present.
Would love to hear more about what works for you, meditation-wise?
Love your last point too – ‘I prefer reality’. Nail on the head.
x
During winter, a few years ago, S.A.D had set in – again, and feeling glum I was browsing the internet. I read a short piece written by an American Buddhist nun, Pema Chodron. (Mother of 2, husband left for another woman, world fell apart – drugs/alcohol/various religions, settled for Buddhism.)
I can’t remember what I read but it struck a chord, I liked it and wanted more so I googled her. Her teachings have put things into perspective for me and after being quite a neurotic individual now take whatever comes, as it comes, and it’s all ok.
I learned meditation through her Buddhist teachings, but obviously that won’t be everyone’s cup of tea, so my advice to anyone who wanted to try it would be to google meditation. There will be plenty of tutorials without any religious connection.
I sit with eyes closed, noticing the myriad of thoughts jumping around but not reacting to them. After a while, gaps start to appear. Imagine your mind is a blue sky, and your thoughts are fluffy white clouds. Pay attention to the gaps between the clouds, but don’t wrestle with them, trying to send them away, because that will create new thoughts – ‘I can’t do it, it’s not working’ ‘I can’t stop thinking’ – that’s when people give up. Relax, let them come, let them go.
Zen saying – ‘Leave your front door and your back door open. Let thoughts come and go, just don’t serve them tea.’
I could manage 1 or 2 minutes at first before boredom set in, or I fell asleep, now I feel the benefit I sit for longer, but I don’t force it, that would defeat the object.
Some teachings say picture a candle flame or keep your eyes open and fix on a spot on the wall. And there are meditations where the idea is to think about some thought in particular. It’s a vast subject.
The more I meditate, the more I carry a peaceful feeling with me through the day.
The Buddhist philosophy also sits well with any religion (Buddha wasn’t a God), and I would say that’s had a bigger impact on me than the meditation. I still get S.A.D but it’s no longer a ‘problem’, it’s just normal for me and that’s ok, I don’t fight it, I accept it, it’s just the way it is, and seeing it like that reduces it.
So, what have you learned here – ‘Don’t ask Julie about meditation, you won’t be able to shut her up!’ 🙂
Hi there,
Thank you so much for that! I’m going to print off your comment and have a good look in to it.
What I like about Buddhism is that it teaches that you don’t have to swallow any doctrine whole – you decide what works for you and discard the rest. Guess that’s why it’s not a religion and more of a philosophy. Really, really interesting. Maybe if I meditate more, I won’t be so ranty!
X
Yes absolutely, there isn’t a book you have to abide by or rules to live by. I see Buddhism as a guide to managing my thoughts, and since ‘our thoughts make our world’ I think it’s pretty handy.
I am not into stuff that requires me to ‘believe’ such as reincarnation, and neither do I make offerings to my little Buddha that sits on my desk.
But that’s ok.
Apparently a bloke called Buddha lived 2500 years ago and realised a bunch of stuff. (Mainly about being a decent person and helping others.)That stuff has been passed on ever since, it’s probably changed a fair bit, you know, Chinese Whispers, but it doesn’t matter. Whoever said it, it works for me. 🙂
Oh, definitely. I particularly like the views on suffering/not suffering. That we suffer because we ‘miss’ something, i.e. we create our own suffering. That the world changes second by second and nothing stays the same. If we come to terms with that, we’ll be a lot happier. I like that idea!
I’ve got a lot of time for Buddhism, more than any other way of thinking. It’s just about seeing the world as it actually is and not what we think it it.
x
Brilliant post and wonderful reply – I have only today discovered your blog – excellent down to earth stuff – thank you.
Aw, thanks Jill! Glad you’re enjoying it 🙂
x
And yet another brilliant blog. Thank you so much for it. Interesting topic….fighting back. How is it possible to fight back when you’re too fatigued to change the sheets (duvets are tricky anyway without doing it from the wheelie!!). I agree it’s not about fighting back…it’s about adapting. As the philosopher Spinozi says ‘it is what it is’. I don’t fight back….I try to make my MS something that I can live with. It sounds to me that you do too.
Your thoughtful blogs truly make me feel less alone.
Jenny xx
Thank you for your lovely comments!
MS can make you feel so lonely (I know from experience) and I thank God every day for the internet, lol.
I say that phrase a lot, ‘it is what it is’. If you can’t change it, adapt to it.
I’m sure people are well-meaning, but it’s such a tired cliche, this fighting back malarky and it certainly doesn’t make me feel any better. The opposite in fact. It makes me feel I’m not quite measuring up to an expected standard. Just what I need on top of everything else!
x
Great post, agree completely.
This is something I am more guilty of though than anyone else. I keep going as if nothing will stop me and this is not helping me at all. Take this week, there has been extra work at my Vets, so I trotted off merrily on Monday, stayed until 2.30pm. Tuesday, stayed until 1.30pm (9.30am start both days). This has utterly fatigued my body and mind into oblivion. I have beaten myself up constantly about the remaining three days but I have had to wave the white flag.
We are taking our son to a long overdue trip to Legoland tomorrow and there is no doubt in my mind, I will be visiting the wheelchair hire section to get me round. I can bugger myself up by not adapting adequately but I have to adapt tomorrow for my son.
I have to stop fighting and being brave for myself.
Xxx
Thanks Sam!
Really interesting points you make there. It’s definitely not giving in using a wheelchair at Legoland. Especially if you would have a worse time without one!
There’s no shame in not ‘fighting’ just to suit other people. We have to do what WE need to do!!
We should start a new club or something, lol.
X
p.s. have a fabulous time at Legoland. I’ve been with Teenager and it’s fab!!!
Hi,
I really enjoy reading your posts and you tell it as it is. I can completely empathise. Thank you for the words. Nice to know I’m not alone!
Have a look at my website to see details of our fundraising for research.
Tim
Thanks Tim,
I checked out your website the other day – it’s brilliant! Amazing how much money you guys are raising.
You’re definitely not alone here!
X
Thanks again stumbling. Saying what we all think most of the time. Been having a bit of a down time recently, legs not walking as far as usual. Hopefully it is just being run down with long hot summer holidays and 2 energetic kids but in the back of the mind thinking is this when I change from RRMS to progressive. Mind you just gave myself a lift by accepting that long shopping trips just aren’t possible anymore BUT shopmobility can help. Going to be back in Uk for a wedding in October and by the power of google have discovered I can rent a scooter for a week in York for 60 quid.. Suddenly feel a bit more positive. Mind you, the husband’s face paled when he realised that I may well be shopping until I ……..ach won’t have to worry about that last bit with a scooter now will I. 🙂
Hi there Sally,
Thank you for your comment!
I’ve only got one kid and even though he’s 14 next week, I really, really can’t wait til school starts again. Am counting down the days!
Shopping always makes me happier. I get carried away with Ocado though and am always surprised how much ice cream slipped in to my virtual basket without me realising, ho hum.
Have a lovely time at the wedding and great news about the scooter. I love York, beautiful place.
X
Sally I had to laugh when I read your reply. My husband wears out way before I do at the shopping centre now and it’s amazing how many bags you can cram onto a scooter! Have a lovely time. x
Also handy, is if you bribe a strapping Teenager to carry bags in town and all for the promise of a Krispy Kreme donut. Easy!
x
We are not long back from our hols in Scotland and the day before we left we did our usual departure shop in the Sainsburys near our friends house. Always scary how much British junk food we end up buying with the excuse ‘ this will last us a few months’. HA! Then the day after we gt back to Brlgium, husband catches the Eurostar to London for the Scotland-England football match. (No it wasn’t him who put Fairy in the fountains). He arrives home last night having done a Marks and Spencer food shop at St Pancras and box of 5 for the price of 4 cupcakes from the amazing shop at St Pancras. Today we shall feast on Hoisin Duck Wraps and cupcakes. Sad I know. 🙂
Not sad at all my dear! Every time I pick up the Teenager from Cardiff Central, I pop in to Marks and Spencer. Obviously not to buy anything, just a browse, but I somehow end up with a couple of bags full.
Bought a box of Tunnock’s tea cakes the other day, as I had a friend coming over. I ate them ALL. My excuse? Reminds me of my mis-spent childhood in Scotland, lol.
X
Yeah there were 2 boxes of those in the shop (plus 2 packs of caramel wafers milk choc and 1 one economy jumbo pack of dark choc ones). How’d that happen
Haha!! Happens to me all the time. For my birthday, my friends got me a retro 70’s box of goodies, including sweets I miss from being a kid. Also got 100 70’s songs on CD which will be brilliant for my birthday bash at the end of the month.
x
Oh and I nearly forgot the 24 pack of Irn Bru.
Yay!! Love Irn Bru. Got my son liking it too. He also had to try deep-fried haggis when we were back in Glasgow on a visit, lol.
x
The great saying, you don’t get it, till you’ve got it always comes to mind, and you will get a bad headache, if you keep banging it against a wall. Lol.
Couldn’t agree with you more Graham!
Am fed up banging my head against that wall. Plus, will it give me more lesions, lol??
x
Great blog again, thank you.
Thanks Tricia!
x
Bravo! I think you crept inside of my head before writing this post.
You are so right. Fight the good fight, eh? Well, for the past 26 years I’ve been doing that, but part of my fight is educating others about MS and autoimmune disease and disability. What we do and do not want/need/desire. Education is awareness. That IS the key.
Marvelous post.
That’s really kind of you!
Education and awareness are so important. A lot of people still think MS is an older person’s illness. Or they react badly to a fairly young person with a walking stick. Especially in this ‘scroungers’ climate. It’s so hard these days.
x
‘oh, you’re so brave, I just know you can fight this thing.’
I just stare at people when they say that with raised eyes. to me its not about being brave or fighting back, its just dealing with it anyway I can. Some people see that as “fighting” the disease, but to me its just getting on with life as much as I can. simple as that
and don’t get me started on the Osbourne’s *rolls eyes* some of the things that his family say make me shake my head
Definitely. I find it incredibly patronising when I’m told I’m brave. I think it would be far nice to be told that I’m coping really well, or adjusting brilliantly to a new life. That’s far more positive.
I think if we take the whole ‘fight’ thing out of the argument, we could equip people to adjust to a new way of living, and isn’t that better?? The brave thing just clouds everything and people often feel they can’t measure up, so are spending more time appearing brave than sorting out their own life. I’m rambling!
x
p.s. did you hear the latest from Kelly Osbourne? Made me want to throw something against a wall. Apparently she wishes she had MS instead of Jack, as she’s had such a screwed-up life with drink and drugs and that would only be fair. Words well and truly fail.
Yeah I saw a few articles the other day about Kelly, but she is sort of a celebrity so needs to be seen as a martyr :/ I do remember reading that Sharon blamed herself for Jack having MS. Its very me, me,me, pay attention to me, what did “I” do to give Jack MS *rolls eyes*
then again mom did ask me if it was something she did that caused me to get MS. Should have told her, if they find evidence that smoking pot when pregnant causes MS, then yes it is your fault :p so maybe its just something that all mother’s ask?
Definitely! I’m gobsmacked they’re all lining up to do the whole martyr thing. Honestly.
I know it’s hard for parents and they have to ask the question. But ask it and move on. If I read one more interview with that lot, I’m going to blog about it, lol.
x
This post to me seems to treat ‘fighting’ MS as a negative point, like we’re just supposed to lay down and say ‘it’s ok’. I can tell you that I have no belief of any religion what so ever. When I die I’m dead, that much is simple. No afterlife, I didn’t get MS so god could work in mysterious ways or because of bad things I’ve done etc.
I’ve implemented a diet based on decades of research over independently funded doctors and professors. Choosing to do something like that isn’t a sure fire way to cure myself, but I’ll give a good go at trying to stop it being as bad as it could be. You can’t cure it, but that doesn’t mean it’s futile to fight it. If that is your philosophy on life, then you’ve ‘lost’. You shouldn’t worry about people’s perception of you and that being why you take an active stance on trying to ‘fight’ it, do it because you want to better your chances of leading a better life than what you could potentially. I get ridiculed for my dietary choices but it won’t stop me from doing it. If I worried about peoples perceptions of me I’d be a totally different person, a weaker one.
I don’t want my daughters growing up and seeing me suffer, that’s not good for a child believe it or not. I therefore will be active in making sure I’m doing something about it. It’s not costing me thousands to implement this, it just takes time and some research.
If people choose to mock or don’t understand and treat you differently, why are you talking to them, if you get the sympathy routine correct them, whether that be polite or otherwise.
In terms of the employment issue there’s not much you can do besides be as positive as possible. Perhaps self employment is the option, now is the time to think of something truly unique or can satisfy a market short of something.
I’m not going down quietly, I’ll ask for the help from those that will when the time comes, but even then I won’t wallow in my situation.
Hi Craig,
I really do think you’ve got me wrong. I certainly don’t advocate lying down and saying it’s ok. It’s not. It’s terrible.
I certainly don’t want my son to see me suffer either, which is why I chose Campath, a chance denied my father, who died in 1978 from MS complications. I don’t want history to repeat itself.
I won’t go quietly either, hence the blog. I write about stuff people with MS think, but don’t talk about. At the end of the day (awful phrase), I write about what’s on my mind.
Of course we should fight to gain the best treatment, remedies, DMDs, etc, but in the meantime, I really do despise people who tell me I’m brave and I should fight. I mean, really?
X
When I told our neighbor that we’d installed a chair lift in our two-story home (my husband also has a neuro-degenerative disease and could no longer go upstairs at all, and many days I literally was crawling up), the neighbor exclaimed, “But walking upstairs is such great exercise!” In their parallel universe, physical exertion makes you better. Everyone knows you should push through and get your exercise! It makes you stronger and healthier! The idea that you can be made much worse or be completely incapacitated just by simple activities that they take for granted is so foreign, it’s beyond their comprehension.
Some of it also goes along with the “think positive and nothing bad will happen to you” movement (especially noxious here in New Age California). Some “friends” once cornered me at a gathering and said they had a video they wanted to show me. It was The Secret. Obviously, I just don’t want to be well enough. If I thought “well thoughts” and was more positive, I wouldn’t be ill. The truth–that any of us can wake up one day with an odd pain or sensation, or get in an accident, and find our lives turned upside down in an instant, and that we have no control over it–is so frightening that they convince themselves they’ll never get so ill or have such bad luck, because they have control! They think correctly! And, obviously, if you have a bad disease and are seen as not trying to “fight it” by thinking correct thoughts and slogging through and pretending you don’t really have it, then it must be your own fault, scrounger. This way, they reassure themselves that life really isn’t random, and that it will never happen to them.
Brilliant points!
What’s so bad about adapting to something and therefore having a better quality of life, rather than trying to fight back just to please other people?? Drives me crazy.
And I know exactly what you mean about positive thinking. It’s almost like we want this illness or somehow deserve it. We’re just not trying hard enough to think calm, beautiful thoughts. Study after study has shown that positive affirmations don’t work anyway, and actually make you feel far worse, as the expectation is pegged so impossibly high.
I think The Secret has done a lot of damage. The only person laughing is the author, all the way to the bank.
I’ve also been told by people that MS is karma. Karma?? Nothing to do with vitamin D then, lol.
x
Yes positive affirmations are a sure fire way to make you feel bad about yourself! As is the notion of karma.
Speaking of vitamin D, mine was ‘particularly low’ at diagnosis, all I have read is ‘they know there is a connection but don’t know what it is’. I wandering if anyone has seen anything more on this.
That’s interesting – I don’t think I’ve ever had my vitamin D levels checked. Funnily enough, they asked me what age I was when I left Scotland, so maybe that was about the lack of sunshine, lol.
I’d love to know more about it too!
x
Oh I assumed everyone had their vit D checked because my neurologist told me they start all newly diagnosed ms patients on it. Different ideas in different regions I guess.
Must be! I’ve never been recommended to take it. Will ask MS nurse about it when I see her at the end of the month.
x
Never had my Vit D levels checked (that I know off), but my MS nurse said it was a good idea to take extra Vit D. There are a lot of studies going on to def. see if there is a link
http://www.mstrust.org.uk/information/publications/factsheets/vitamind.jsp
http://www.mssociety.org.uk/ms-news-and-research/ms-research/potential-treatments/emerging-areas-of-research/vitamin-d
Thanks for that Jennifer!
x
Karma! What a cruel and insensitive thing to say. It boggles the mind sometimes what comes out of people’s mouths. Do they honestly think they are helping?! Ech. Speaking of not helping, I think The Secret and its ilk have done a lot of damage too. Pretty despicable.
I actually have been un-diagnosed and have now been told I don’t have M.S. I apparently have some other kind of neurodegenerative, or possibly vascular, disorder they can’t figure out. But I have been told that my vitamin D levels have been very low. An endocrinologist (I also have adrenal problems) told me to take around 2,000 IU a day. Apparently, low D levels are complicating factor for a lot of things–or at least that’s the fashionable medical line of thought at the moment. It might be worth checking into.
HI Ellen,
Will definitely be checking into the whole Vitamin D thing – I always wondered if taking it was like closing the door after the horse had bolted, now I’ve got MS, lol. have you had a new firm diagnosis??
I too think the Secret has done a lot of damage. Urging people to put their faith in something and perhaps neglecting their own strengths. And she’s made a ton of money out of it. Meh.
Maybe I should write a book, The Not-So Secret, lol.
X
I think increasing your vit D could only help. Definitely worth checking out.
As for me, no, there is no diagnosis, and there’s a possibility I might never have one. The neurologist has thrown out a frightening possibility and a few other guesses, but it all seems to be, really, guesses. But the symptoms I live with are basically those of M.S.
That must be really difficult. But diagnosis or not, you’re still living with the symptoms and I hope you get the right support.
x
I haven’t read the other comments your post yet. It is interesting to not in my shoe comments. usually these comments are from people that have no intention of being mean they just thank the Lord tothemselves,y s not me thank you thank you. I’ll try back on another one day when I can speak and comprehend at least a touch better. I am interested in more of what you have to say
Very true!! People don’t always realise how hurtful they can be I guess.
x