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What support exists for those with long term conditions that aren't disabilities?

(9 Posts)
littletike Thu 08-Sep-16 21:03:59

I've got damage in my hip that has been causing me problems for over 2 and a half years. I have been in pain every single day though the level of pain varies. I've had a steroid injection which relieved some of the pain but it is still there. I have to think about what I do and how I do it every day to ensure that I can continue to work and look after my ds.

Is there any support for people like me?

I am only managing to keep my job because of an understanding line manager who managed to arrange certain adjustments for me such as a parking space but I may be losing this as I don't have a blue badge. If I stand or walk for too long I am in agony and can barely move. I keep everything to the bare minimum so that I can expend all my energy with my very lively and active ds. My reluctance to overdo anything physical has been commented on by 'friends' (the exercise will do you good, you aren't disabled, don't be lazy) I keep a brave face on it and most people don't know that I am in pain every day.

I'm having regular physio which is helping build up the strength in have lost as a result.

I don't know what I'm looking for really. I just wanted to express how draining it is to live like this. How humiliating it is to have to explain to people that I can't do x y z because of a bad hip, that I'm not crying because ds is having a tantrum but that I'm in agony trying to restrain him.

I need to give myself a kick up the ass and stop feeling sorry for myself but tonight I feel shit because the pain is really bad.

Simmi1 Fri 09-Sep-16 05:02:02

I can relate to your post littletike. Chronic illnesses are just the worst. I find that it's so hard to distract yourself and forget the pain when it's always there and you just get fobbed off by medical professionals once they've ruled out anything life threatening. You have my sympathy 💐

Morasssassafras Fri 09-Sep-16 05:23:12

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

I'd say that your condition as you describe it would qualify as a disability. Which may not be what you wanted to hear as I know I struggled initially as acknowledging that I have a disability.

Mine also has a large pain component but is invisible and I know that can be hard because people don't realise what you are going through.

What kind of support do you need?

GreenGoth89 Sat 10-Sep-16 18:29:19

You could get a blue badge if your GP can state that you can't walk 100 meters without being in substantial pain.

WreckTangled Sat 10-Sep-16 18:34:31

Eugh I feel your pain. I have a 'hidden disability' although it's progressive so is noticeable plus diabetes, severe hip dysplasia and lupus tendencies. At my worst I wish I was actually in a wheelchair so people could see blush sorry not much help, excuse my self indulgent moan grin

Have you got a plain clinic at your local hospital? Wondering if they might be able to help.

littletike Sun 11-Sep-16 07:45:02

Thanks everyone.

I don't feel it's bad enough to be called disabled because I am still capable of doing a lot of stuff but it causes me a lot of pain and I can barely move after. It's more the cumulative affect of doing stuff if that makes sense?! Like I can walk 100m and probably be ok unless im in pain to start with... but walking 100m on uneven ground/chasing or carrying ds or walking around a supermarket pushing a trolley and loading/unloading shopping will mean I suffer.

On the days I work I walk very little as luckily I have an office job but even sitting for periods hurts. Then I come home feed and bath and put DS to bed. On my days off I try to take DS out at least one day even just to the park but even that is planned - putting him in the car seat and chasing after him and fighting with him so he stays in the buggy most of the time we go to places like the zoo or is on his reins because he will run away from me and kick/push me when I get him and that hurts...

I checked the online eligibility for a blue badge and it said I wasn't eligible.... I will ask my gp what they think because even though I'm doing a lot of strengthening work they've said the pain will probably still be there.

I guess I need understanding from others and the ability to say I need to sit down/can't walk or stand without feeling bad about it. I'm a person who hates any type of personal attention and it makes.me uncomfortable to have to explain my issue to people. And even then how do I explain it?

Morasssassafras Mon 12-Sep-16 10:51:42

Does your condition/injury have a 'substantial' and ‘long-term’ negative effect on your ability to do normal daily activities? From everything you've said the answer is yes. Yes, you can still do stuff because you have to but the hip pain has a negative effect on normal daily activities. To most people I don't look disabled because I only see people when I'm not feeling so bad, when I'm bad I'm in bed. I'll stop beating that drum now though because, as I said, I found it a difficult thing to acknowledge myself.

I found it helps for a while to join support groups, online or in person, around my conditions. It helped me to know that I'm not alone. Hearing your thoughts come out of somebody else's mouth is validating. It's also helped me to have the language to explain my problems when needed. Is that something that might be useful?

littletike Mon 12-Sep-16 11:06:51

Yes it does. I know you're right. It's just makes me feel like a fraud when I see the requirements for stuff like a blue badge.

Yes that might be useful. Coincidentally ive just been looking at what our company has to deal with these things.

TryingtobePrepared Mon 12-Sep-16 23:52:51

You'd definitely come within the equalities act as the previous poster said so you have rights under that at work. I managed two people who come under the act. 1 we do the whole formal assessments with OH advice etc etc, the other doesn't like the thought of a label but we have a couple of very low key agreements about her work. It's no biggie they're great and I wouldn't want to lose either. One has a parking space but wouldn't qualify for blue badge. the threshold is very different for the equalities act might be worth asking boss about the possibility of keeping the space om that basis.

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