Turns out, I'm an object of pity

Everyday living
1

Hi all,

I’ve just found out that my friends have all had a big discussion behind my back and decided in fact that I’m to be pitied.

I’ve said some frankly awful things recently. Instead of calling me out, they’ve let me get away with it and I’ve now found out that it’s because they feel sorry for me. Yes, in the last eight years, my life has changed dramatically. I’m housebound, I don’t have contact with people, and I can’t really do anything at the moment because I’m waiting for a wheelchair accessible home from the council. I’ve been on the list for nearly 2 1/2 years now. Because I can’t use my chair indoors, I can’t get guide dog so it’s all hinging on finding somewhere else to live.

Despite this, I am doing a degree and headed for a first. I am living the best life I can. If I say something hurtful to somebody, I want to be called out, I want to have a discussion about it. What they’re doing is just letting me off the hook and I don’t feel like I can trust them any more. Real friends would not behave like this. And if they feel so sorry for me, why are they still being absolutely awful and letting me go for days without contact with anyone?

I feel like I’ve lost everyone now because I can’t trust them. I hate pity, and I feel sick knowing that they just coddle me now.

Has anyone else experienced this?

Thanks all

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Hi Tingly_B
I won’t say “I’m sorry to hear how your friends are treating you” because I know you don’t want pity, but I will say I empathise with you.

Unfortunately people often react badly (no excuse though) to things they don’t understand, MS usually being one of them.

How about you calling them out on their behaviour? Would you feel able to do that? If they accept their part in this, perhaps you can have a grown-up discussion with them and move forward in a positive way. If they react badly, maybe they’re the kind of friends you could do without… what do you think?

Good on you for continuing with your studies and heading for a First, Wow! That is to be congratulated. It takes a lot of determination to study for a degree even when fully fit, so I applaud you for being able to do it whilst coping with the vagaries of MS.

You don’t have to feel alone with all this, we are a friendly bunch and whilst we can’t do anything other than be there for each other, that in itself, is worth a lot.

Kind thoughts
Willowtree

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Hi Tingly, mmmm…awkward this state of affairs.
The thing we with chronic conditions would prefer, is empathy and definitely not sympathy.

You’ve got a lot going on…wanting to move, doing a degree, difficulties with ‘friends’ and not getting out. Do these friends talk to you on the phone, fb or what? Looks like you’d rather not keep these friends, when you cant trust them anymore. Do you regret any of the unpleasant things you have said? Are apologies due from you?

Do you have any mobility which would allow you to use Shopmobility? I used them a lot, before getting my own scooter and then wheelchairs. At least that would get you out a bit.

Looking at things from someone else’s point of view, can be eye opening. Maybe sometimes you could be cutting your nose off etc…

Boudsx

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No, they don’t call me, but I do appreciate that everyone else has busy lives. Work, kids etc. There’s always a more pressing issue and I think I’m out of sight, out of mind for them.

I have apologised. I feel ashamed. I would much rather have a conversation about it it than just hear ‘it’s fine’ when it clearly isn’t.

The problem I have is I suffer from Nystagmus. I am registered as partially sighted. I can’t go to the shops because I can’t see what I’m doing. This all comes down to needing a guide dog but not being able to get one because of the housing issue and the wheelchair issue.

For this reason I can’t make new connections because I can’t go out. Because of my eyes, I can’t recognise faces so meeting new people terrifies me because they’ll just be a fast-moving blur. It’s so bad that I wouldn’t recognise my own mother from 6 feet.

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Thank you!

Yes I’m doing my degree with the Open University. I began about 10 years ago. 2 years in, I got diagnosed and had a 5-year break. I then had a word with myself and went back to it, and I am now less than 2 years from graduation. I don’t work anymore but because of my fatigue and and lack of concentration, I can only study in the morning so I treat my degree as my full-time job. I get up and get to the desk etc. The routine is really good for me. When I started I had a full time job but things are a lot different now.

Yes you’re right, I could do without them, although I feel like I’m doing without them anyway. I live alone (except for my beloved cat) and manage to the best of my ability. I gave up driving because my nystagmus got so bad. The only people I really see are my PA, my Pilates teacher (she gives me a lesson at home once a week) and my myofascial release lady who comes fortnightly. Otherwise it’s me myself and I!

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I think the issues with your friends are a symptom of the real problem as opposed to the problem itself.
Your friends are likely trying their best under the circumstances with no real idea how to approach it. You’re in a tough situation no doubt, but be the change you’d like to see.
It might be a good idea to speak to your GP about your stress levels.
Good luck. Retro.

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I haven’t lost friends due to MS, but I did lose a couple over the years for reasons that were never clear. One still really bothers me 30 years later, because I’d thought we were particularly close.

All I can suggest is to find hobbies and interests that appeal to you and suit your abilities. I think it’s great that you’re working towards a degree! Are you able to get involved in online forums or chat groups about your studies?

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Yes we have a lot of forums with Open University! It’s a great community.

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As someone who has had MS for 20+ years, I think I have earned the right to state the obvious fact that, from the perspective of the healthy, chronic sickness is a boring, bloody nuisance. That means us. Unless we’re saints, all of us can look back to before we were sick and remember, however ruefully, that we thought so too. I certainly did. So please try to cut your friends a bit of slack.

It seems to me that we cannot change how others feel and behave and we’re much better off concentrating on changing how we behave, even if we can’t do much about how we feel. If your distress and frustration cause you to lash out verbally, don’t wait for your friends to react - just get in there first and apologise. And please don’t make them second guess what you want from them.

I am sorry that you feel so unsupported. Alas, it is often human nature when we fear abandonment to behave in the very way that gives people an excuse to leave us alone. Please try to be open with your friends about how much you value the mutual pleasures and obligations of friendship, and I hope very much that you reach a more mutually respectful and enjoyable way to enjoy each others’ company

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Sorry guys! I seem to have gone in the other direction. Life is too short for inhibitions, saying the right thing, suffering fools and worrying what other people think :smiling_imp:

I don’t intend to be deliberately unpleasant, upsetting or confrontational but it’s much easier to say what you think and do what you want. Quite liberating in fact :stuck_out_tongue_winking_eye:

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Hello TB

I agree with what everyone has to say about this. I completely get what you’re saying and agree with you. Being pitied by people we were once equal to and by no means pitiable of bloody horrible.

But, can I play devils advocate a bit? Maybe our friends (and I’m sure mine as well as yours), pity us because our lives tbh, turned to shlt when MS moved in.

Maybe not at first. In the early days I was still working, had a great job, was fit, looked pretty good (if I say so myself!), had a fabulous car (still miss my lovely company car!), was independent and busy. Now I’m massively disabled, can’t drive, am completely dependent (on lovely Mr Sssue so not all bad), and really quite often have a fair degree of self pity.

I’m quite certain my friends (and those who are my friends love me and I love them), do in fact pity me. Why not, my life is certainly not what I expected. I bloody envy their lives. My best friend lives in the middle of Edinburgh. She has a great life. She has a great job. She’s married with an 11 year old but very independent. She and her husband share equally in their childcare. She goes out for dinner a lot. She goes to the gym just to sit in the sauna to get warm. I adore her and she adores me. But if she also feels a degree of sympathy and even pity for me, then I forgive her. I would if our situations were reversed.

I have other friends who equally have good, healthy lives. They go dancing (to clubs in pre-Covid days, in their kitchens these days!) and to the pub just for a drink without considering access or disabled loos. I kind of envy them too. I used to go dancing with them. Or danced around their kitchens with them. They probably feel sorry for me too.

That doesn’t mean if I say anything out of order I don’t expect to be called on it. Nor would I temper my thoughts, words, attitude. Friends are friends. If someone speaks out of turn, they get called up on it and where necessary, we apologise.

I have other ex-friends who I believe dropped me because I became too disabled. It was uncomfortable being my friend. They had to make too many adjustments in order to stay friends with me. (One person I believe already had a very disabled friend and didn’t have room in her life for another - a kind of ‘quota’ thing!) B@stards.

So while I get what you’re saying, and your friends are out of order just letting you behave badly because you’re disabled. But then again, maybe they know you’ve really been having a cr@ppy time just lately and want to give you a break. For all you know, actually they might admire you for the fact that you might have physical problems, and omg, nystagmus is the pits, but you’ve really been using your brain.

Studying is hard when you feel like hell. Getting a degree is tough enough when you’re fit and healthy. Qualifying for a first is always awesome. I didn’t even try to get a first, and I was fit and well. I’m impressed by you and I’m sure your real friends are too. They might feel sorry for you, MS isn’t fun, it’s hard. They might just lately have given you a ‘pass’ over things you’ve said.

If they’re real friends, if you care for them and respect them, maybe you could either talk about what you expect from them (ie, not to treat you differently because you’re disabled), or just let it go. Promise yourself not to treat people badly and if they let you get away with doing so, then next time talk about it.

Feel free to argue with me. I’m a grown up, just as you are. That’s half the problem you’re tussling with, do we let anyone get away with stuff that’s hard to take, or is just plain wrong. Or is it sometimes OK to just let it slide?

Sue

(Meanwhile of course the issue that they might not be phoning or visiting enough is quite a different issue!)

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cant your PA take take you out? If you went out more with them, it would give you more confidence. I used to run a class for adults who were badly sighted to use the computer. My tutor was classed as blind she was amazing. she didnt have a dog at the time. She had a friend who wouold take her to new places so she gained confidence. with her stick it was amazing how many people would offer to help her.

your PA could help you get out. What about invitiing friends IN? for a coffee and cake etc? its a start.

we all say things we regret i have potty mouth for sure i say things as my brain isnt balanced or something have upset people on here too, but its not intentional. I tell that to my friends from a long time back. I APOLOGISE if i upset you bit its not intentional but just tell me off lol.

you are doing an amazing thing, make new freinds with your open university group. I am too waiting for an adapted place from the council i think hell would have frozen over by the time i get one lol. I live in sheltered indpendant where there are people my age who organise things for the lounge. I HATE IT. All i see is WAITING FOR GOD that t.v. programme. everyone is always talking about someone i hate it. I can only live in honesty and two faced people i can do without. I cant stand people patronising me either. I get spoken to like a child.

I am also housebound. i HAVE so much to do, talk to family on skype, play with cat and dog lol. I have had a great life 70 now been there done that.

Maybe your friends just dont know how to talk to you anymore and its upto you really to put the record straight and be honest. maybe start by inviting a few over.xxx
w

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Very well put Sue
Boudsx

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Why doesnt your PA take you outdoors?
BoudsX

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I will just say that I think maybe cut your friends a little slack. Not because they’re not behaving poorly: it sounds like they are. Rather, it’s hard to know how you would react in their shoes, and it’s hard for them to know how they’d react in yours. Is it pity, or is it discomfort? I think we can all appreciate that if life has rather kicked us in the crotch, we might get kind of short too, we might say some things we later regret. As a friend looking on, or being spoken to poorly, you might feel like actually, if you were in that position you might start saying things you regret too, so you just offer blanket forgiveness. Sure, there’s pity in the mix, but you don’t know how to react, and to some degree, you can’t control how you react either. All you’d be thinking is how terrible you’d find being in that situation and how poorly you think you might cope, and suddenly it doesn’t feel very fair to judge someone by the exact same standards. If saying terrible things is kind of understandable, then why get mad about it? That’s what you might be thinking. But at the same time, if you can no longer do the same fun things with your friend, and they’re saying nasty things to you, even if they apologise, your feelings might be kind of hurt and emotionally, you might back off a bit. If you’re not all hanging out together regularly, it’s not so easy to move on, because your last significant interaction is still the negative one that caused all this.

My opinion as a profoundly lonely person is don’t kick your friends to the curb. Try not to take their pity personally; it’s not a cruel emotion, and it tends to be borne out of misplaced empathy. My honest opinion is that this sounds like a situation where radical honesty might be your best shot at a resolution. Either as a group or one-on-one, get together with your friends, and tell them how you’re feeling. Tell them that the pity hurt, and that them talking about you behind your back hurt but that you understand that they might have needed to lean on one-another for support too. I absolutely understand how you feel on this front, but try also to put yourself in their shoes: imagine you’re healthy and a friend gets very poorly, and you don’t know what you know now. That situation might be hard for you, and you might reach out to mutual friends to talk about it, and you might support one another to be forgiving and patient. But to the person in question this might seem rather like all of their friends meeting up to talk about them behind their back, and deciding on pity. Tell your friends that you know you maybe aren’t the same person socially as you once were and that you know you said some terrible things; reiterate that you’re sorry about the latter. Tell them how isolated you are, and how lonely, and how much it hurts that they’re not reaching out to you. Ask if they can please try to find ways to include you, and to stay in touch. Make it clear that you’re strong, and you’re coping, but you’re lonely, and you’re feeling hurt. Don’t attack them for their actions, just be honest with them. It might not save things; maybe the truth is that you’re just at different parts of your lives now. But it sounds like it might be worth a shot, to see if you can rescue some of what you had as friends.

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