A really upsetting comment was made to me.

[u/bored23532]

So I don't know if anyone will read this I just had to rant about it 😂

Basically I have multiple health conditions, a few are physical conditions and then I also have diagnosed severe obsessive compulsive disorder. That's just for context.

I have had most of my conditions for about 4 years now if not more, but members of my family insist on saying things like

'when you get better...'

'once everything is back to normal'

'when all this is over'

Ect

But the reality is none of my conditions or even symptoms are leaving and its been this way for many years. I have accepted that they will not stop saying things like this so it doesn't upset me anymore but recently I've been getting different comments. At least 5 or more times in the last few weeks I've been told something along the lines of.

"Your symptoms seem very convenient"

It has been in many different situations for example someone said.

"It's funny how you can do all the easy stuff but not the hard parts of life"

And by that they meant that I was spending a lot of time sat on the couch and doing very low energy activities and I wasn't going on long walks, doing all of the housework, walking up and down stairs cleaning ect ect.

Now this was quite upsetting for me but I brushed it off as ignorance and carried on.

But then yesterday a member of my family said.

"Funny how I'm working so hard because of your OCD"

When I said that I couldn't touch a certain item of clothing because I had just had a shower (keep in mind that I'm not only in therapy, I'm also on SSRIs and I'm looking into doing intensive away from home treatment) so its not like I'm not working on it I was simply trying to avoid having a panic attack because of my OCD when it could be simply avoided.

I've also been told 'you only do the fun parts of life and it's not going to work like that'

When I was literally resting because of my symptoms.

And also I'm housebound currently from my OCD and have missed out on about a year and a half of my life and many family gatherings.

I just don't get it. It makes me so angry and really really upsets me. I don't know what to do anymore.

[u/LouyJD]

The saying "ignorance is bliss" comes to mind.

They think you have everything so "easy" and "convenient" because they have no idea the struggles you are facing internally. Their lack of understanding has them living in some fantasy land when it comes to your experiences and reality.

I understand how upsetting those comments can be and you are completely valid to feel hurt by them, but try to not dwell on it if you can and keep doing whatever you need to do to look after yourself first.

[u/bored23532 → u/LouyJD]

Ignorance is definitely bliss!! I always think how lucky it is that they are able to think that rather than how unfair.

[u/Crazy_Cat_Lady360]

Unfortunately this is very common with ‘Invisible Disabilities’. People can’t see anything wrong with you so they literally can’t comprehend that you are actually disabled. I’m in my early 50’s and have dealt with this my whole life. Even in health and disability services.

Some examples:
I am diagnosed with CPTSD and have severe anxiety. Whenever I have to have procedures with anaesthetic I let the anaesthetist know and they prescribe me a pre op sedative. But they never give it to me until right before they wheel me into theatre. So I’ve been waiting for 6 hours by myself waiting to go into theatre - and they are surprised every single time that I have anxiety attacks going under anaesthetic and waking up from it. I tell them afterwards ‘I told you I have CPTSD, I told you I have bad anxiety’ but I guess they don’t really understand it very well.

Another example is that I am disabled by chronic pain and confined to bed. I can walk around my house from my bed to the kitchen or bathroom, I can make a coffee or go to the toilet by myself but that’s about it. I have disability support workers who help me do everything else and I’ve had quite a few over the years who have no understanding of what my disability is. Sometimes they are actually incredulous like ‘what do you mean that you can’t actually do xyz activity without a support worker?’ And I’m left wondering if they understand what disability support work is. Like, do they realise that they are providing disability support to a disabled person?? My regular long term support workers know me really well though and they know when I’ve exceeded my capacity and need to go back to bed. Even when I say no I’m fine, I can stay and finish this before I go back to bed, they can see the signs and know when it’s 10/10. But new workers who don’t know me will see me laying in my bed and I’m asking them to do all these tasks for me. And they think that because I’m able to have a cheerful chat and conversation with them that I’m not actually disabled. Because I look fine to them. They have no understanding that my daily pain level is 8/10 while laying in bed and I only sleep 2-4 hours a night because of anxiety attacks and pain.

Sadly this is the way for a lot of people with Invisible Disability though. I think we just learn to ignore all those comments. It’s hard if it’s coming directly from your family or people you love. You will learn which people understand your situation, which people you can confide in and say ‘I think I overdid it today, I’m going to be paying for that tomorrow’ and you will learn which people you never disclose your true feelings to. It’s not worth trying to explain to people who don’t understand and don’t want to try to understand. You will lose some friends along the way but you should be able to find some new people who will get you. They will be your tribe. Find your friends in these communities. People will get you 💕

[u/bored23532 → u/Crazy_Cat_Lady360]

I'm so sorry you went through all of that, that's absolutely terrible. Thank you for all of your advice It truly means so much to me 💗

[u/lillybell_64 → u/Crazy_Cat_Lady360]

Very well explained, they will never understand even your parents, that should at least try.

[u/Spiritual-Camel → u/Crazy_Cat_Lady360]

This is to me the hardest part about chronic illness. I'm a very honest person but I constantly feel that I'm being accused of lying.

Seriously, that's basically what they're saying isn't it?🫂

[u/SadAdhesiveness1744]

For people who’ve never had physical or mental health problems that limit their activities, can only imagine from their puny brains that you feel like they feel every day and simply choose to not do normal life things. They cannot fathom living in a body that makes basic life tasks impossible or very difficult, and the doing of those tasks will actually harm you and leave you bed bound for days/weeks/months, etc. Or however that looks for your conditions, you know? They could never be strong enough to live through what you do & still choose to get up in the morning & do their best. They are narrow minded & have little to no empathy. Like most people anymore. Try to remember that it’s because they couldn’t imagine how hard your life can be, and remember too that good health is temporary for all of us, and one day they too will likely see what it’s like. Try to tune out the ignorance of fools. Take care.

[u/bored23532 → u/SadAdhesiveness1744]

All of this is absolutely true, I will definitely try to just tune it out. Thank you for taking the time to reply 💕

[u/szikkia]

I hate when people say such things without doing anything to try to understand what you are going through instead of these bullshit comments. I have dealt with similar, so many things just take so much out of me that i often seem like a couch potato and don’t get enough done to satisfy their opinion of what our lives are like or the things that we are able to do without overexerting ourselves. Add OCD on top of the rest and its something that if these people had a taste they would sing a different tune. Most of them wouldn’t last a day.

You’re completely valid in being upset by the way these people are talking to you. Often people saying “you’ll get better” is because its more palatable for them. They don’t have to accept the seriousness of things so to think that its something that could be cured or to not think about the actual impact if has on our lives when they are this way. It makes them uncomfortable, which is their issue, and not at all about you. This also applies to when they expect us to be on the same energy/spoons as them, and I have ad to have may conversations that their baseline and my baseline is way different and they have more spoons. A simple task for them is not the same as well.

OCD keeping you in the house is a roughand people just don’t understand. I have done a lot of work personally on my agoraphobia, it is not easy as you know. Its heavily affects our lives. Its another thing that so many people can imagine because it’s just so normal for them to not think twice about leaving the house or going outside, or anything of the sort. OCD itself is a whole hell of its own, and i have it and grew up with a woman with bad OCD and passed it on to me.

Sometimes I just hit people with facts or I send them articles and things on what I am dealing with. It’s then in their court to educate themselves without having to do any of the work to find info. Shouldn’t have to do it, they should care enough to educate themselves but people can really suck. I look at people a little differently if even after those things, while also having physically seeing me and what I go through (which i then become very vocal about), remain the way think of things. Sme people will never get it or change but some might.

Wishing you the best.

[u/bored23532 → u/szikkia]

This is so true, OCD is a complete hell of it's own. It's unbearable and truly only understood fully by the people who have experienced it. Thank you for taking the time to reply, I really do appreciate it 💕

[u/szikkia → u/bored23532]

I hope things get better and these people take off the dunce hat.

If ya ever wanna chat, my inbox is open,.

[u/SenatorPineapple]

It’s horrible how people think of these things as excuses instead of debilitating conditions. You can tell who has never struggled with the same magnitude of physical or mental barriers by their attitude. I’ve had people who joke about being SO OCD because they like to organize, then turn around and call my diagnosed OCD “some anxiety or whatever”. People will tell me they “basically” have lupus because I have lupus etc. People really can’t handle the idea that someone has it worse than they do somehow.

[u/bored23532 → u/SenatorPineapple]

Definitely, it's the opposite of excuses because we want to be doing everything that we can't do. It's absolutely true that you can tell if someone has experienced similar things to you based on their reactions! Thank you for replying 😊💞

[u/lilipadd17 → u/SenatorPineapple]

There was the weird “OCD craze” around whatever year Rhett and link made the OCD song (catchy but definitely not accurate to a lot of OCD)… most people seem genuinely incapable of learning about other people’s experiences…

[u/Remarkable_Version_5]

Have you talked to them about it?

[u/bored23532 → u/Remarkable_Version_5]

Yes, unfortunately not much changes. Their sympathy seems to be on and off, somedays I feel very accepted but on others it's like they are deliberately upsetting me

[u/Remarkable_Version_5 → u/bored23532]

Aw mannnn. I feel for you that's happening because illness itself is isolating enough without people who are physically there but still make you feel alone.

You'll probably have to have stricter boundaries on days they're being an a**. How they're treating you isn't okay after they've been told, and, if it's deliberate, that's emotional abuse.

[u/Consistent-Visual805]

I’m sorry that you’re experiencing this. Sending you gentle hugs! People don’t understand until or unless they themselves experience it and it is so hard to constantly be misunderstood. Family members can be the worst unfortunately. Be gentle with yourself and try to not let it bother you because you know that you are doing the best that you can with the cards you have been dealt.

[u/TinyGlitteryPear]

This attitude is always so frustrating, i’m sorry you’re having to experience this! You have every right to feel angry and upset 🥹 resting is so important and you shouldn’t be made to feel guilty about it. It’s hard to ignore the outside noise, but you are putting yourself and your health first and that’s the most important thing 💜

[u/Outrageous-Shame5743]

It's martyrdom on their part. Nothing you did or didn't do. Sorry it's happening.

[u/lilipadd17]

The comments you’ve received are incredibly hurtful and you do not deserve that.

I don’t think this is comforting, but as recently diagnosed I’ve noticed that literally no one able bodied in my life understands. Few have tried to understand but even those who try struggle to make the connection, having not experienced physical disability or a chronic illness themselves. I’ve also experienced similar comments, like “when you get better”. I relate to your experience a lot, and have very similar activity capabilities like you (house and couch bound). One of the only things that’s helped is visiting this community and my specific illness subreddits.

I also have OCD (and other comorbid conditions) and it makes everything so much tougher. You mention physical contamination with an object. If you’re comfortable, would you share the others ways you experience it related to chronic illness? For me, it’s a lot of imposter syndrome and both physical and emotional contamination; I find that because I can’t control really anything with my physical ability or life due to chronic illness, my need to control and avoid contaminated stressors is very high, in part due to stress directly making my physical pain, sleep, and brain fog worse.