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Having to explain 'disability'

kitsmum

I have multiple invisible chronic conditions and am fed up with having to explain to family members how my disability affects me. They make me feel like I'm just being lazy when I say I can't do things due to energy limitations. I am off to a family wedding at the weekend and the venues aren't wheelchair friendly so surely I can just walk the short distance. Not allowed to use the disabled parking because that's reserved for the old folk. Feeling really upset to be honest.

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Comments

sarahw85

I get the same from my family I’m constantly being asked if I’m ok .. when I say I’m exhausted I get “ me too” I know they are trying to relate but please just don’t ( brain injury problems)

I’m no sure what to suggest because the same advice should be the same I should use .. hang in there ! Distance yourself where you can (only thing that works for me) and protect your peace if all fails then get some leaflets leave them out for people to have a nosey and read them. Maybe they need educating on what you are going through

Elizabeth100

That's dreadful not to be taken seriously. As one of my friends says, how much do you want it? You are being asked to use up your very limited energy levels to attend a wedding at a venue that is not accessible. Do you want to do that? Or would it be worse to not attend?

I'm sorry this is going on for you. Might you be better off explaining that without an accessible venue you simply cannot attend? Or is socialising and keeping in touch more important, at the expense of your health and energy levels? Decide what You want to do. Take care, E xx

SaraC_Scope

Hi @kitsmum

I understand the frustration of feeling like you have to justify why you can't do certain things, because of a disability. Especially invisible conditions. I have epilepsy but because it's controlled by medication, people think I'm fine! I'm really not.

I've learnt over the years that I don't have to explain myself to others or feel guilty for asking for help. This takes time though.

Have you contacted the venue to discuss your needs? They might provide some adaptions to be able to accommodate you. Even parking closer to the entrance. I'm wondering if you have some family who understand your day to day struggles or a close friend who can support you.

I hope the wedding goes well and you manage to have a lovely day.

Sara

ScrFta

I'm afraid you may be fighting a losing battle trying to educate ignorance.

My son suffers with epilepsy, spondylitis and sugfers quite badly with insomnia because of his conditions and medication. None of these are visible disabilities but can be just as debilitating as a missing limb or failed senses.

It's always a battle with people to make them realise that he actually has problems that prevent him from taking part in many activities that most able bodied people take for granted, both family and friends and authorities.

I sympathise with your situation but I can only suggest you adopt a similar attitude to my sons, who cares what others think, it's none of their business. If that means you are excluded from certain events then that may have to be the case but as stated, you can't educate the ignorant.

peaceofmind

I’m so sorry you have to deal with this. It’s very dismissive and disrespectful of you and your situation.
There seem to be two issues here. One the general dismissiveness of your health and then this wedding.
Over the decades of judgement and stigma in my life I realise now that one of the biggest aspects of my inner healing is accepting that others simply won’t get it as we do and others relating to you do but even then each situation is different but the healing for me is to RESPECT my situation enough to put safe emotional, mental and physical boundaries in place and learning those is a journey in itself. However once that is beginning to take place and you are ‘literally’ standing up for yourself those situations like the wedding will sort themselves out. You will be able to stand firm in who you are and your needs for these situations and make your claim for parking spaces and accessibility help and assistance and if the help isn’t available you can make wise decisions for yourself. If you choose not to attend such occasions then that will be a choice you can take knowing it what is right for you. If family members or someone is willing to support you in your needs then that’s fantastic but until we stand firm in our needs they will keep pushing the boundaries. We cannot change people. We can only change ourselves and from there amazing things can happen. It might take some hard knocks and upsets to get there (which in my case it has) and times of deep grief at the things I cannot attend or will not due to the lack of support or accessibility. Life’s choices are hard and this journey is too. Grief could be the root of all this.
My health decline has left me missing out on the good times and so many aspects of life, walking, driving, work and helping with my grandchildren for example. My family cannot and so not understand but after years of working on my grief and loss I am beginning to deal with it and accept it better. It’s never going to easy and my heart goes out to you and anyone else on this journey. But the bigger expectations we have on others the deeper the pain of the let downs and resentment can build up. It’s hard and I know that. I hope this encourages you to stand up and advocate for what you need - your actions will speak louder than words! No means no. Boundaries are needed in relationships and in a new dimension with illness and disability ❤️

Scrapper

https://forum.scope.org.uk/discussion/123721/having-to-explain-disability

Hi, sorry you have to put up with this. I know what it's like, people are very ignorant and often don't even try to understand. If you really want them in your life could you give them some information to explain. Maybe they'd believe official info cuz they obviously think you're a malingering scoundrel.

I really don't get people because it's not a big ask to learn about what somebody you love is going through. That's what I wonder about a lot because how can these people possibly care if they can't even do that. Sorry to be blunt but they are ignorant and assume they know everything which is one huge brick wall to break down.

Personally, I wouldn't attend the wedding. Then perhaps they'd see that you can't just do it. At the very least use the disabled space because it's reserved for disabled people not elderly people despite what they say. What a cheek!

Danlangridge88

Oh I hate that. I have chronic fatigue syndrome. Some days it's so deliberating I literally don't have the energy/strength to even get up or move. It's like having severe flu (but worse) without the head cold feeling. And when I tell people I'm fatigued they're like "yeah me too" just coz they're having a lazy day, which is completely different.

To be honest sometimes I refer to myself as lazy or just can't be bothered, as that's easier than explaining my disability, but theni do just look like a lazy bum..

quinceorange24

Hi everybody, I'm sorry to hear about how people are being treated ,I know some people don't think that I'm disabled.

SAW.

kitsmum

@Danlangridge88

I have ME/CFS and have now been diagnosed with Fibromyalgia as well. I don't 'look disabled so people expect more! Yes it is really debilitating and I struggle myself with thinking maybe I'm not really disabled! Feel for you

kitsmum

@nightcity that's a lot to be coping with. I have mental health issues physical issue endocrine issues along with the neuro ones. It's really tough isn't it

orangeapple57

It's exhausting I know unfortunately the law doesn't help in that regards as the onus is on the individual to educate those around them as to their needs.

smokey18

Hi Kitsmom

I hear what you are sayingI too experience the same difficulties. I had a stroke 6 years ago and the chronic pain and fatigue i experience everyday is unbearable at times. People still believe that I am able to go to work and think that I there’s nothing wrong with me now. So annoying and frustrating. Stay strong.

Jimm_Alumni

I am lucky in that many of my family understand how much my Crohn's can effect me. But it can certainly be an issue with some people. I can't count the number of times I've been told that I should try x or y diet and "you'll have no more issues, honestly". It gets frustrating. I feel like it's then worse when you try to politely inform them that it isn't really a case of simply changing to a specific diet and they can sometimes feel affronted that you've 'rejected' their, usually un-asked for, advice.

It is a form of ignorance, and it's a matter of patience, but patience itself is a tiring thing. Another struggle that comes with being disabled unfortunately. I am again lucky though that my partner, or a family member if they are around, will sometimes speak up for me if I am too tired to have that patience.

colejames

Hi Kitsmum, sorry to hear about what is happening. Like the others who have commented I don't have a visible disability and I've been in the position on numerous occasions where I've had to explain about my condition. I'm also a 61yo gay man which brings the same challenge and reactions (especially when I was younger in the 1970's thought to millennium).

I have spent a lot of my life as members and latterly an employee in the trade union movement dealing with union learning which was about getting adults back into learning, especially those who had been failed by the education system and I learnt a useful lesson early on in that role because people did not want to admit they couldn't read or do maths (actually many were very clever people and had developed brilliant coping strategies to hid their situation).

When I went into a location, I would first find out if anyone was interested in finding out more and if no one came forward I would try to work out who in a group was respected or whose opinion was listened to and they would be the people I would concentrate on. Basically if I could get those individuals to understand the issues and benefits, then they became people who would also get the message across.

Are there any family members who you are close to or who are listened to by family members? If you can explain your conditions and how they affect your life, then they may be useful allies in explaining to the rest of the family. It also helps you emotionally as well as you're no longer on your own.

You may have already tried something like this but if you haven't then it might help change things. I know with both being gay and having mental health issues, I will never stop having to "come out" but when you have people supporting you it can be easier. From the gay perspective, many have "found families", I have a mixture of both. The only relatives I have are an elderly aunt and a cousin who is the same age as I am. I am completely out to both of them but they live hundreds of miles from me. I also have a great "found family" who are a mixture of straight/bi/gay etc and who have mental health or physical issues and those shared life experiences and supporting warmth make it easier to deal with those people who don't want to know or understand as well as those who judge (which is an even greater crime in my opinion).

I don't know if this will be any help, but fingers crossed. I also think that the advice to contact the venue is really useful as they may be able to help you as I doubt that you will be the first person that they will have to enable to attend a function in their venue. If they enable it, then it might also raise awareness to your family.

Look after yourself.

Neil

Sandra7

It is tough when others don’t understand. Society doesn’t seem to have time to understand hidden disabilities. Remember you try you hardest and you can do no more. Some people never want to understand. Do you really want to go to this wedding? Spending time with people who make you feel bad doesn’t sound like much fun. If there will be people at the wedding who are more supportive and if you will be able to spend time with them enjoy their company.

Kev1n

I am not sure if this is relevant but, the ruling on disabled parking is clear, if you have a blue badge and there is a vacant disabled parking space, they cannot be reserved it's first come, first served. Even if you pay, using your own money, to have a disabled bay marked on the road outside your own property, anybody with a blue badge can park in that space if it is vacant.

quinceorange24

Walk a Day in My Shoes is a good idea, they should do a programme like that.

I asked the channels to do something about more disabled people being on TV and I haven't heard anything from them.

Dendoo

I must obviously struggle to explain myself when describing symptoms but now I’ve applied for pip I’ve been keeping a diary so when my appointments come round I don’t want to waste them . Will be printing them off to take with me . Be quicker and I won’t forget to mention something . As for everyday people. Can’t answer that . I’ve just done 6 weeks cbt course for those with long term pain conditions I need to master not worrying about others think

And learn to say no without guilt .

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