THERES ALWAYS SOMEONE WORSE OFF THEN YOU....

I was SHOCKED this morning. I was talking to a friend and told her i was feeling down still. She turned around and said you need to stop thinking about your illness. REMEMBER THERE IS ALWAYS SOMEONE WORSE OFF THEN YOU, you need to think about them and give them sympathy then you might feel better.

I was really upset. Should I have been?

Yes there are people out there worse off then me, but how will that make me feel better if i give them sympathy?

I said to her, the thing is I know people who have had breast cancer and heart disease, and they are now well, back at work and even going on holiday.

I am still here on my recliner and have not had any improvement for 7 years and getting worse. I cant even see a light at the end of the tunnel.

IS it wrong for me not to want to be sympathetic for everyone who is worse off then me? I dont have the energy and if i do start thinking about all of them it makes me even more depressed.

I said to her perhaps IF you had been chronically sick for 7 years you might see things differently.

I feel quite depressed now I thought she really understood how I felt.

This is a bit like my mum and the starving children in Africa when I wouldn’t eat my porridge as a kid!

No matter how supportive and caring our friends are they cannot truly understand how mind grinding it is to have a chronic illness. Just like “a bit of fresh air” won’t help you, consideration of other people’s situations won’t heal your lesions. It’s not a state of mind, you can’t shake yourself out of MS but it must be hard for outsiders to comprehend that the listlessness does not stem from lack of desire just lack of ability.

Don’t get depressed by this – it was a thoughtless remark and we can’t blame people for not understanding. You can come here for people who understand the reality and who will never expect you to “Buck Up”

hiya

firstly i totally get where ur friend is coming from-i would have explained myself further tho…

its doesnt matter 2 hoots to you if someone is worse off or not cos its not a competition! ur pain (and i dont refer to just physical) is unique to u and the the way u cope is UR way. comparing ur pain/suffering is like comparing sawdust and an aeroplane-its just not comparable!

i wouldnt expect you to give anyone symapthy in the context u describe but what i would and do expect is compassion-thats a different thing.

several years ago i read a book called 29 gifts-it changed my outlook on life and i still live by its principles today-its not so easy these days but i still do it because it changed my mindset.

please search some of my other replies-not cos i think i am right-but i hope you will get a better understanding of what i am trying to say.

i believe the key to success in cracking this ms malarkey is sod all to do with what is happening to ur body but how ur mind copes with it (i deliberately dont say brain cos that gets mucked up too-i know)

you sound very angry-just at the world in general BUT all that will do is eat u up. you may be angry at me for writing this but i truly hope that once u understand what i am trying tosay then u will see i am only trying to help you…

i understand all that u have said-and why but when u close ur eyes tonight forget about today-it will be gone/in the past so start a new day tomorrow.

take care and know that ur post has been read and thought about-thanks for sharing. ellie

hi golden girl,

yup i know EXACTLY what you mean, at times it’s been all i can do not to scream in someones face when they say that. i find that it actually makes me feel worse to hear it. i recently realised that i’ve now been in daily pain for over a decade, so i really understand what you mean. i honestly believe that a good old rant really helps me vent and seems to relieve some of the pain,and as a certain supermarket chain likes to say… every little helps, though they probably wouldn’t want me ranting in a branch of theirs. i know they’re trying to help but they really don’t ‘get it’ do they. ms sucks (we should all wear t-shirts with that on).

take care,

wendy x

Hi thanks for your honest post.

No i am NOT angry at the world far from it. I used to run a support group for people with undiagnosed nuerological problems. I love people in general and have a huge compassion for those who are so ill or worse off then I am. I DONT DO ANGRY its a wasted emotion. I am actually having counselling at the moment to help me and I am dealing with meditation and other things which help me cope. I pay for my own counselling.

It wasnt that so much as why would she say such a thing after 5 years. She has NEVER said it before. It took me totally off gaurd.

I cant be responsible for everyone who is worse off then I am. I can just cope with myself right now, and I use every ounce of my energy to ensure that my family do not suffer from my illness, even to the point that I feel like screaming with pain, I try not to let them know i feel as it just drains them.

EVERYONE has stuff to cope with I get that. BUT I dont think it helps anyone when you are told THERE ARE WORSE PEOPLE THEN YOU OUT THERE…its just empty words it gives no support whatsoever.

Hi GG62, I hope you dont mind me saying what I am going to say…just different strokes for different folks I guess.

Ive had my illness/condition` for 16 years now. I have no mobility in my legs, am hoisted for all transfers, need carers for lots of things.

I was wrongly diagnosed with PPMS for many years. Diagnoses went back and forth and I was totally underwhelmed with the majority of the neuros I saw (all 16 of them).

One of the things that actually has helped me, is knowing that there are many more folk, and even more who have lost their fight, who are worse off than me.

This is due to the visits to a hospice I used to make for reflexology, art, massage and respite stays. I met loads of lovely folk who had cancer and are no longer with us.

My natural self is quite upbeat and hopeful and people often ask me how I manage to be like that.

Having said that, of course there are times when I do get down and struggle to keep going.

I`m not saying you are wrong in you what you feel like or say, I am just trying to explain how it is for me.

Im really sorry you were upset by your friends words. No-one has the right to deliberatly hurt someone else`s feeling.

I hope you have a better day tomorrow hun.

luv Pollx

Maybe it would be better to think of it the other way around there’s always someone better off than you. There is a Stiff Little Fingers song that puts this much better than I ever could so I will give you their lyrics

They tell you not to worry - they say they’re terribly sorry
But that’s the way it has to be - for the likes of me
Just be good and know your station - always look on the bright side
Keep your faith and keep your patience - your reward is after you’ve died

So don’t be told - don’t be consoled
Things are so bad - you can never make do
And there’s always someone better off than you

They tell you that’s your future - it’s all down to human nature
Simply settle for what you got - that’s destiny and that’s your lot
All of us cannot come first - yes, what you have is second-best
But it might be a good deal worse - third world peasants get even less

So don’t be told - don’t be consoled
Things are so bad - you can never make do
And there’s always someone better off than you

Do you care that it’s not fair? Is this the way we have to live?
I know I care and I want an equal share
Even if it means I have to give

The people who are on top say that you should keep your chin up
And they are keen to show you the unhappy ones below you
But I want no more of that stuff - that’s looking at it upside down
And the world has got money enough for us to make it go around

Don’t be told - don’t be consoled
Don’t be ruled - don’t be fooled
Because things are so bad you can never make do
And there’s always someone better off than you …

hiya again

hope u feel better today.

i just wanted to pick up on something u said-this is totally from my own experience so feel free to ignore…

‘i try not to tell them how i feel cos it drains them’.

you are doing urself no favours especially in the long run.

i know u r trying to protect them and i understand why but if u r not being completely truthful and they were ever to find out just how much u r/were suffering then that may raise questions as to why u couldnt be truthful with them. i know that if someone is not honest with me it hurts (for several reasons) -even if they think/claim its for my own good. sometimes those that have ms become self centred (again completely understandable cos its hard to deal with all and can take over ur life)

soooo what i have learned is to be honest (which has proven to ease the situation as now i need carers) and they are not mind readers! neither is my family so its easier for everyone to understand my wants/needs etc

this is all so difficult isnt it?! but honest communication and a strong mind puts u in good position to cope with whatever life throws at you/us…

take care, ellie x

Oh my days. I am NOT a violent person at ALL, but that really would’ve made me angry! I probably would’ve slapped her in the face, (not actually, but I’d probably want to!) And in answer to the question “is it wrong for me not to be sympathetic who’s worse off than me” no, I don’t think so. As Arctic Monkeys say" I’ve been selfish, you should try it sometime". Tis alreyt! :slight_smile: and btw hope you feel better soon!

From newly diagnosed xx

m.s, and I guess it applies to other conditions as well, has developed a peculiar non-sensical vcupus vocabulary which means nothing.

‘other people worse than you’ ‘come to terms with it’ ‘has a wonderful sense of humur’ ‘fighting the disease’

TBH whether there are others worse than me is not something that pre-occupies me, no I haven’t ‘come to terms with it’ (what exactly does that mean??) I don’t have a wonderful sense of humour.

meant ‘vacuous’ not ‘vcupus’ {vcupus sounding like a video of Tiddles} hey-ho.

It never helps to say there is always someone else worse off then you.

When I was a nurse on the wards, sometimes a patient would say to me, I mustn’t grumble must I…there is always someone else worse off then me. How does saying that help?

I would tell them never to say that, your illness/problems are just that, yours!!

Your friend was insensitive…perhaps she was having an off day

Sorry its made you feel upset, I hope you cheer up soon

Take care xxx

Dear love the poor soul - and, logically, there must be a single one, somewhere in the world - than whom there is NOBODY worse off!

Your friend is showing her lack of understanding - please try to see that as her problem, not yours. Even so, it is always a nasty shock when a person who seemed to sort of understand turns out to not understand at all. I hope that it has not upset you too much.

Alison

Hi hun you always bring a smile with your posts thanks.

Yes I think your right, she was having an off day. I mean I get fed up with myself, and after 5 years of me maoning she is a saint really.

I am having a bad week or two since christmas, perhaps just feeling over sensitive or something.

Hugs. x

Hi there,

Ghandi said “To undestand someone,you have to be able to walk a mile in there shoes” I use this thought daily. To get remarks off your friend shows how little she does understand what it is like to have MS. Take it with a pinch of salt. I and all of us do understand what MS is like to live whith We have no choice. I,m sorry you feel hurt, but just look at all the friends that have given you there support whith there replies. And with that i,m going back to bed! My scottie dog (Harvy) has had me up most of the night. Theres a new tom cat on the block.

Jane x

we have to, develop a thick skin,because the world is full of insensitive people,and i get all sorts of stupid remarks from so called friends and family.i quickly learnt just to ignore them,its the only way,if not it just adds even more stress,and we msers have enough of that to deal with,i think a lot of people dont know what to say,so just end up saying the wrong thing.

I come across this everyday - I look after people who are absent from work with various illnesses and conditions and the truth is that yes, there are people who are worse off than you are. It’s not my day job but one of the duties of being a union steward, so I support them as they go through my companies absence process.

This puts me in a unique position; I have a disability of my own but deal with people who have a range of conditions and illnesses who think that their situation, and how they’re feeling, is the most important thing in the world. Some are unable to see beyond their condition, others are, and more than once I’ve really wanted to tell someone that they have nothing to complaint about but I don’t, because that would be unfair on both them and me.

Yes, MS can be an extremely unforgiving condition and I know what I’ve personally had to give up over the last 12 years. But it’s also increased my understanding and empathy for others, and made me extremely grateful for what I do have. It’s allowed me to look at and consider the context in which I live my life.

If someone comes to me for help I don’t compare that person to me, I do my best to understand how they’re feeling and the impact on their life. How does their illness affect them in then context of their situation - family, work, friends - compared to when they weren’t ill? And sometimes the impact is devastating, even for what might seem like a relatively minor conditions.

So yes, the reality is that there’s always someone worse off than I am.

I take no pleasure in knowing that but it helps me keep my condition in context: I may not have a lot, but I am grateful for what I have and who I have in life. I’m not bitter about my condition or what I’ve lost, but thankful for having been fortunate enough to do those things in the first place.

I also take time to explain to people what my MS means to me and how it affects me. I ask for understanding and not sympathy because I don’t need sympathy. Sympathy won’t make allowances for being unable to open a bottle or for needing 5 extra minutes to get somewhere, but understanding will. But never assume that someone else will automatically understand how you feel, even if you’ve known them for years. All relationships take work and it’s easy to become complacent, so make sure your friend truly understands how you feel by explaining it to her. Don’t assume she just knows.

I make sure that my wife, my family, my friends and my co-workers all know how I feel. It takes effort on both my part and theirs, and some of them conversations are difficult and uncomfortable, but it makes life easier and if someone is unable to understand, or more importantly chooses not to, then they have no place in my life. I choose to have people in my life who support me, help me, understand me. They don’t feel sorry for me, molly-coddle me or say I can’t do something, and they get the same back. My core group of friends is very small as a result, but the relationships I have are very rewarding.

When people say there’s always someone worse off, they’re right. That’s a fact. It’s how we deal with that ourselves which is more important and that’s a state of mind. It’s not always easy, it’s sometimes frustrating and upsetting, but as Ghandi also said, be the change that you want to see in the world. Be the person you want to be.

I am sure that this post is going to meander off in lots of pretty little circles so forgive me!

I think that I can see the different sides in this - probably because I think that there isn’t actually a lot of distance between us all.

Our MS and our reaction to it is just that. OUR response. Nobody has the right to tell somebody else how to react. There is no right or wrong way to react to the **** that life throws at us - all there is is the reaction that you have at the particular time.

I am sure that to some people I might seem very upbeat and positive whereas to others I might seem miserable and self-pitying. If someone says to me “cheer up, there’s a lot worse off than you” what is the point? Who benefits? Not me. Not the person who is worse off. Like people have said, it’s not a competition. You don’t get a prize for being the worse off. You don’t win some kind of “cack-pot” in a disability lottery!

The only person who possible does is the person making the trite observation because it gives them a little cocoon of smug where they can rest secure in the fact that the person who is worse off is definitely not them.

Does anyone remember the Victorian (?) children’s book Pollyanna? She used to play the “let’s be glad” game all the time where whatever awful thing happened to her she always looked for the positive spin. One of the classic ones was when she got given a crutch for Christmas by the church charity and she was glad and thankful “because she didn’t need it” I hated the character when I was younger and I still do. (Have you ever wanted to smack a fictional character right in the kisser? Well that was me and Pollyanna!)

However, just because you don’t make yourself care artificially it doesn’t mean that you don’t genuinely care and empathise. Last week, I had yet another MRI scan because I had a possible/probable relapse before Christmas. Rather than wait for months for an out patient appointment, I was treated as an in-patient on the day of my Tysabri infusion.

I have been miserable leading up to it because I am worrying about the possible lack of effect of the Tysabri and it wasn’t a particularly nice experience this time. Because I was an in-patient my scan was pushed back a couple of times because of emergencies. Then, when I finally came out of the scanner room the porters were bringing in another trolley. When I glanced over at it I thought that there wasn’t anyone on it. Then I realised that there was.

It was a tiny baby.

It wasn’t crying (presume that it was heavily sedated) but it was quietly whimpering. It’s parents were outside in the waiting room and they were distraught. I don’t know what the problem or what the outcome was and I never will know. All I know is that for ME, it put things into a bit of perspective and I have not been able to stop thinking about it since.

However, if soneone had said that i should cheer up because that family was better off than me how would I have reacted?

Garry, I found your post very interesting and so well written. You have a remarkable way of explaining things…difficult things which can easily be misunderstood. I agree with your way of looking at our illnessess and other peoples perceptions of them. I accepted my lotquite early on. The thing that annoyed me most, was that I was messed about over a diagnosis. I was mis-diagnosed for years and then messed about with further. However that is, as I saidmy lot`.

The job you hold sounds like it isnt at all easy, yet you have found a way to cope with it and I admire you for that.

luv Pollx

Such wise words throughout your post, Garry. Thank you.

Alison