Explaining your limitations to ‘normal’ healthy people.

Jekyll2701

Hi to anyone who reads this. How do you explain to ‘normal’ healthy people the physical and mental limitations your condition/s have on you in a way they can understand?
I’m asking this because I’m fed up with people I know saying "you should try and get out more, then you’ll meet new people and start to enjoy life", no matter how many times I explain to them how difficult it is just to get out of bed each day, let alone travelling and going out to places and the big one, remaining pleasant and civil to people while in agony due pain? 

OverlyAnxious

Don't think it's possible.  I've given up trying to explain it as 'normal' people don't understand no matter how many times I try to reword something.  They just return to pushing their original agenda regardless.  

Keep being told I need to 'compromise' on physical limitations.  If that was a possibility, I wouldn't be trapped in this situation!     Main problem for me is the word 'anxiety', nothing has ever been taken seriously since that word appeared, it's just assumed that every limitation I have is just in my head and would vanish if I just 'tried harder'.

Jekyll2701

I think you’re completely right @OverlyAnxious, I wish you weren’t but you are. I hope it doesn’t come across patronising using ‘normal’ in this way but it was the only way I could think to describe people without debilitating physical or mental conditions.

I’ve had the same issue with people understanding the anxiety issues, unfortunately this has cost me quite a few friendships over time. I understand how each person who suffers from anxiety displays different symptoms (not sure that’s the right terminology) when they have an episode of any degree, I know mine are anger and aggression because I can’t physically get away from any situation quickly that triggers it, resulting in scaring people including people I have known for years. The ‘compromise’ and ‘try harder’ or my favourite ‘you could have it worse’ comments, have made me realise how ignorant some people really are when it comes to any health related problems.

rustledjimm

When I was diagnosed with Crohn's and before I had meds that worked for me it took a lot of patience to be told repeatedly "oh have you tried <insert diet fad here>?".

Crohn's trigger foods are pretty unique to each person, though there are certain foods with a higher chance of triggering issues of course. I certainly got tired of trying to explain my trigger foods but people generally accepted when I told them how it affected me.

Now with my ADHD, that is an entirely different ballpark. The issue of course being that everyone gets lack of motivation, procrastination and many other hallmarks of ADHD. Just with ADHD there are so present they negatively effect your life very heavily.

I'm not sure if it's a correct way to go about it but the one I've had most success with is that people tend to understand sensory-overload autism. About how certain people's brains are not wired in the same way and do not process whatever sense that affects them the same way non-neurodivergent do. I then say that essentially in my ADHD my brain does not process time and focus the same way non-neurodivergent brains do. I heavily struggle to control my focus, executive function as just 2 examples of what I struggle with.

I've asked my friends who have autism if this is an acceptable way to explain it and they were okay with it, if anyone has a bother with my comparing of the two please do let me know!

It's still far harder to get people to accept it, I've even had a Nurse suggest why I bother with medication for something other people can just use schedules for. I do use a schedule, but I still struggle to focus and stick to it! Wasn't in the mood for a debate so just let it lie.

Jekyll2701

Thank you @OverlyAnxious and @rustledjimm for sharing your personal experiences and thoughts. It’s allowed me to see that I’m not the only person to keep running into this issue, I had started to believe I wasn’t doing enough and kept pushing myself way too much, resulting in agonising pain levels and being unable to even get out of bed for several days, due to that self doubt and belief I was being lazy, after hearing the same comments over and over again. 

rustledjimm

You are not being lazy. What you are encountering is a sad fact about a lot of people, they lack basic empathy.

Jekyll2701

I’ve started to realise that sadly, and it has caused me to stop confiding in people for advice or even just sharing thoughts and feelings. I just smile and say I’m ok, when asked how I am.

rustledjimm

I would try to find someone, or a few people, you can trust and confide in to still talk about things. It's healthy to talk about your issues with others than to bottle them up. Trust me, I've experienced bottling things up for too long in the past. The stress and anxiety just from keeping it hidden is a lot to deal with.

I imagine there will always be people here to listen and chat with, just like we're doing now.

cheekylittlekoala

I gave up trying to explain to "Normal" healthy people what it's like to have a long-term illness! Its too much now so i don't tell people anything... The only people who need to know already know!! 

Jekyll2701

I understand the aftermath of bottling up everything only too well @rustledjimm, it’s not something I wish to ever repeat. I was suggested something called SHOUT, if I was comfortable discussing things with people close to me, has anyone had any experience with them? Or any suggestions of other organisations? 

I don’t particularly want to keep contacting my mental health team because I’m terrified of being sectioned! (Sorry for the poor choice of words but that is the only way I can describe it)

@cheekylittlekoala, I think you’ve hit the nail on the head, but I have one question if you don’t mind answering, are the people who know, your support network or is there another avenue you use?

cheekylittlekoala

@Jekyll2701- My support network are the only ones that know, I haven't told anyone else because they wouldn't understand and i don't need people making unkind comments or making any judgement over me, I have enough going on in my head.

Jekyll2701

I completely understand that and I’m really glad you have those people around you 🙂

Jekyll2701

@stormy I don’t want ‘normal’ healthy people to do anything for me by making them understand, all I wish is for them to stop suggesting things/activities that are well out of the realm of possibilities due to my physical and mental health, and think before they speak and ‘suggest’ these things in the future.

rustledjimm

I think the thing people struggle the most with is the long-term nature of many disabilities.

Many people have been sick, ill or hurt in a way that affects their mobility. But they know it will only be for a few days, a few weeks, maybe a few months. They will be "normal" again. It's hard to describe/explain what it's like to have the knowledge that it's just always and forever present. It is the norm for us. I think that is one of the hardest things for people who do not have disabilities to understand.

66Mustang

I don't explain to people unless they need to know e.g. are a professional because it would bore them to death listening to me for probably 3+ hours, and it would (and does) bore me to death having to repeat the same dull story every time I met a new person.

What I used to find harder than someone who doesn't get it, is someone who thinks they have got it. When that happens they tend to switch off to any further explanation because they think they don't need to hear any more.

Something that helps me is if I need to tell someone I can't do something I basically just semi make up a vaguely truthful reason why. I tell white lies in that I use a simple quick story instead of telling the truth which is long and complex. E.g. something that emphasises that I am struggling but in a way that's common or universally understood. In truth I am not suffering in that exact way, but I am suffering equally. Equal but not the same if that makes sense. Telling it exactly how it is would take probably 3 pages or half an hour so it's just easier to say something that people will easier understand. As an example I just tell people I wash my hands a lot because I have OCD, as this is understood by a lot of people. In truth it's far more complex and the first explanation is not even fully true.

As someone has said above the people who need to know the truth already do.

Agree @stormy and I like the trans analogy. Using someone's desired pronouns is not the same as completely understanding a disabled person's limitations. Using a pronoun is easy, it's basically on the same level as allowing for a disabled person use a disabled toilet. Understanding someone's limitations is hard and if it was that easy, every disabled person would be understood! Interestingly I say this as someone with disabilities as well as gender issues and (this would probably offend trans people, not intentional) I think they are one and the same as gender issues cause a load of activities/tasks to be harder or completely unable to be done, just like any other disability does.

Just from my point of view I think intent is the overwhelmingly main part of whether something is offensive - if someone is trying to offend me, then I should be offended, if they aren't trying to offend me then what they say isn't offensive. For that reason I don't get offended when they ask why I can't do stuff, or scream at them as mentioned, I just carry on explaining that I can't do stuff, and let them get frustrated and make the first "offensive" move, before deciding that they aren't trying to help and aren't a friend.

Also agree about the friendships, I had 4 real life friends who I met at a clinic several years ago. I lost 2 due to not being able to socialise in a "normal" way, and the 2 remaining, while they understood why I wouldn't be going out with them, as suggested above them simply understanding doesn't solve anything, the friendship is now simply an email every few months whether they understand or not.

Just some rambling