Acceptance vs Willing my disability away

Former Member

I'm having real issues coming to terms with needing support and not being able to do all the things I want to do or the things I used to be able to do. I hate using a stick - I'm sick to death with people asking me what I've done to myself - like its obviously my fault I'm unwell! I feel like have have a fair few people in my life just telling me to will myself better, and then I have people from my support group telling me I need to accept my condition, learn my limits and live within them (with the hope that I may one day get better).

Its getting to a point where I am having problems with even just going to the shop on my own (my boyfriend was worried I might faint because I'd been feeling off all day). I really don't know where my headspace should be? I know loads of people who are in their 40/50/60s who have fibromyalgia and they just sit on their arses all day watching day time TV and have set aside all their hopes and dreams. They just complain and it sometimes seems like they are just wishing their lives away. Now I know how that feels - when I'm in a lot of pain it can be totally unbearable, but, shit I'm 22 I've got an entire life to live and I plan on damn well doing so, but I feel so messed up and embaressed about asking or even receiving help (for instance the guys at Caffe Nero know me well and if I'm on my own they will always bring my coffee over no matter how busy they are, even if I say I can manage! I also get really peeved at elderly people holding the door open for me, it should bloody well be the other way around!).

I know its about acceptance either way i choose, but where is the balance and how do I get over this embaressment about how I've become? I used to be bouncey, and fun loving and fiercely independent. Now I feel like I'm a shell of my former self and I hate it. I don't want to get used to it, I want my old self back!!

Reena

It will probably take time to come to terms with your condition. There are no quick fixes to those kinds of feelings.
But I will say that feeling embarrassed is understandable. Being offered help when you don't want it, or even feeling embarrassed when you do, if you were independent and all of a sudden find you're dependent on others, it is hard to make that switch.
But you can still be independent with certain things. Or perhaps you could learn to do things differently from now on. Have you been offered any support or advice? Is there any special equipment and tools designed for people with your condition?

They say that people are generally good, and although it's nice they want to help it can sometimes feel a little annoying. But I think it's just their nature to want to hold the door open for you. Out of kindness. I'm sure they would hate to feel they have offend you in any way.

Accepting others help doesn't mean you're any different as a person from before. It just means you're adjusting a little bit. *hug* xx

Former Member

I do want help but sometimes I feel like I should just struggle on. I haven't been offered very much support or advice from GP or anyone - I'm doing most of the research myself. I'm trying to put lots of structures and routines in place, but I hate keeping to a routine. Theres no special equipment or tools for fibro, but I've just been looking at the mobility/disability aids online. I will get to see an OT at some point but it could be 6 months plus.

What I really hate is when I'm consistantly asked what I've done to myself by random strangers. I was discussing fabrics in a shop with an older women a few days ago and she right out asked me what I'd done to myself to need to the stick. Shes not the first, I get asked it all the time and it really angers me!

I'm also angry that its meant I can't go and have a night out with my friends anymore. Infact I hardly ever see my friends, I'm not sure how many I even have left

Former Member

Hi Miss_Riot

I have arthritis (in my wrists) and I feel the same mix of emotions as you do. I have good days and bad days, when I'm having a bad day the only way I can cope is by wearing my wrist splint - cue a lot of strangers asking me what I've done to myself! I used to hate this and lie about it, but then I realised that it wasn't going to stop people asking so I learnt to be honest and explain that I have arthritis and I need the splints to support my wrists.

I used to get annoyed when people at work would try and make my life easier (which writing that now does make me feel silly!), but I was so frustrated about not being able to do the things that I used to be able to do, and which they could still do.

I think it's a question of gradual acceptance for me. I've realised that I can't magically make myself better, but I can still do a lot of things I used to enjoy doing. It's about managing your limitations - emotionally and physically - and not being afraid to accept help. My work life has become much better now people know about my arthritis. If I'm having a bad day they know not to put me in certain areas, but likewise they know that I can work just as hard as anyone else in less manual handling work.

I'm not sure that this helps at all, but just wanted to let you know that you'd be hard pushed to find someone with a disability who hasn't gone through a similar mix of emotions at some point.

Former Member

I've found in the past that when you get asked "what have you done to yourself" it is often down to a lack of understanding. Many people may well view your get up and go attitude as who they perceive you to be, so anything that changes that in their eyes will naturally make them ask "what has happened".

Their lack of understanding or even basic knowledge of what is going on is something that may need to be dealt with. Though even if they were fully aware of the issues you have, its quite awkward I feel in some cases to ask how things are when its quite blatantly obvious all is not right.

Its an odd one in that when people ask how you are, its usually either people making themselves feel good (oh ive showed ive cared) or genuine showings of caring. Either or its still better than people not caring at all and not paying any attention.

I'm aware that I've expanded on a relatively small point of your post, but I don't feel that I can add much more on top of what the others have said, so I don't think its worth retyping stuff over and over. Though at least I hope I have added some value.

Reena

Miss_Riot wrote: »

I do want help but sometimes I feel like I should just struggle on. I haven't been offered very much support or advice from GP or anyone - I'm doing most of the research myself. I'm trying to put lots of structures and routines in place, but I hate keeping to a routine. Theres no special equipment or tools for fibro, but I've just been looking at the mobility/disability aids online. I will get to see an OT at some point but it could be 6 months plus.

What I really hate is when I'm consistantly asked what I've done to myself by random strangers. I was discussing fabrics in a shop with an older women a few days ago and she right out asked me what I'd done to myself to need to the stick. Shes not the first, I get asked it all the time and it really angers me!

I'm also angry that its meant I can't go and have a night out with my friends anymore. Infact I hardly ever see my friends, I'm not sure how many I even have left

I think it's very insensitive of strangers to ask that. In the last place I worked, there was a parent in her early 30's who always used a stick to help her walk. I often wondered why but I never asked her, I hate it when people ask out right, because whoever they're asking might find it really intrusive.
She was lovely, always smiling, offering to help out all the time, so positive and bubbly. And her kids were a credit to her.

Maybe you could suggest going out for a meal one night with your friends. That way you can have a catch up, have a drink (if your able, are you on medication?) and you'll be sitting most of the night.
I find I have to make a point of getting in touch with my friends sometimes, I like to keep in touch as often as possible and meet up when we all have time. With one friend, I always end up having a chat in hers, because she doesn't drive or have much money with her baby, and we talk for hours.

Hope you're okay hun. xx

Former Member

I suppose it all comes down to how "intrusive" someone might perceive it to be (towards themselves).

I hate to say it, but if everyone worried so much about how someone might feel about being intruded on, nobody would ever talk to each other. Then you get into the realm of people complaining that nobody cares about them, or ever gets in touch to ever ask how they are. When people suffer from bouncing up and down in emotions, which I myself have been through in the past, you can flit between the two quite often. Then one moment you will complain about others talking to you too much, then complaining when people dont talk to you enough.

Reena

G-Raffe wrote: »

I suppose it all comes down to how "intrusive" someone might perceive it to be (towards themselves).

I hate to say it, but if everyone worried so much about how someone might feel about being intruded on, nobody would ever talk to each other. Then you get into the realm of people complaining that nobody cares about them, or ever gets in touch to ever ask how they are. When people suffer from bouncing up and down in emotions, which I myself have been through in the past, you can flit between the two quite often. Then one moment you will complain about others talking to you too much, then complaining when people dont talk to you enough.

You're right, but strangers don't need to ask about that kind of thing. They could ask anything, why choose that?

Former Member

Then people accuse them of being disingenuous for avoiding the obvious.