What is it with these people who keep telling me I don’t look ill like it’s unfair.... I feel judged and found wanting and it’s getting me down so does anyone else get these sort of comments......
I go out once a week on average I rest up the day before and go straight back to bed after!!! And because I only go out once a week I put on a bit of eyeliner and lipstick I’m not a big makeup person.... but my husband drives me and I like to make an effort he sees me in my dressing gown A LOT!!!
I have CFS, fibromyalgia I’m bi polar and an epileptic and yes I don’t think I look all of these things but that’s why they are called hidden illnesses isn’t it .... they should call round when I’m struggling to get up the stairs!
Please tell me I’m not alone....
Written by
daisiemaiskye
To view profiles and participate in discussions please or .
25 Replies
•
💜hi, your not alone .....I get it ,drives me nuts , you can't let it get to you , Just because my eyes are open doesn't mean I'm fully functional.......lol xxxx
Most people just speak without really thinking. I think people who've never had it have no idea what it feels like, so they can't empathise, even if they wanted to.
I remember once, I felt well for about 10 mins. During that time I couldn't fathom my own down days. Without inflammation draining you its a different way of being.
Hope you feel better soon. x
Hj
I think we all do have down days. Try showing these people this forum to help them understand it. Some people say to me you look well but I know you aren't well inside so at least they are trying to understand, I know I'm lucky . Love and hugs Lynne xxxx
Hello yes and if they dont say the words they say it with their expressions its really hurtful and yes i say the exact same as you if they came to my home on the rest of the days that im not out an about then they would see for themselves coz i obvs look and move arnd completely different i even went as far as taking before an after pics once an put them on fb for all to see it was embarrassing and humiliating for myself but i got so pst off with it i thru it out there and beleive me they cud see a difference but now ive come out of fb i cant face anyone i feel ashamed for doing it haha. And i still get the same response anyway. But yeah best advice i could give is ignore their ignorance its the only way to not get yrself down as u no emotions play havoc with us so try not to let them get to u down and keep yr pride put yr lippy on if not for yr hubby for yrself. . One day one these people may get fibro and or cfs themselves as u no it can strike at any time at any age or maybe someone they no will and then theyl see this what i say to myself too...keep yr chin up an keep yr pride and get yr beautiful on hold yr head high regardless of others xx
Thank you for that it’s exactly where I’m at and yes I too have been tempted to put a picture up but I hate the thought of people seeing me look like that... tbh the walking has become more of an issue lately so more have seen me struggling..... and I was awarded pips which as you know they don’t just give out lightly.... that lady saw me when I was at home and couldn’t walk properly!
Don’t beat yourself up about the FB post we all do things we regret but it’s in the past now and you know in your heart they’ve forgotten it’s just us with the horrible ability to focus on the negatives.... you too are beautiful you wouldn’t be on here supporting the likes of me if you weren’t... xx
• in reply to
I think , if those people woke up feeling like I do , they would call 999....when they worked out where the phone is and how to get to it ... X
My doctor told me yesterday that I looked fine, and she actually is a young doctor and believes in this condition
( it was her suggestion, prior to referral to rheumatologist for confirmation, that this was what I had) I told her that I looked ok because I’m a proud person and made an effort to look presentable, but had to spend a couple of hours to look presentable and would pay the price for it later. She was saying it to me to give me confidence I think, as she then went on to refer me to a neurologist, and does believe my symptoms.
Maybe it is just people’s way of being kind, and expressing that s/he thinks you look well, without meaning to sound as though they disbelieve you, just a thought. I do feel like most people on here though that a lot of people do not accept fibromyalgia as a condition, and it does mean that I often get defensive and take things the wrong way, that’s what happens when we live with this horrible condition.
Yes there is that.... thanks for reminding me! My mum is someone who is always telling me I look good on it andI know she means it in a complementary way!
I’m by nature a person a positive Person I have fought health problems for years.... I believe we all have a choice as to how we react and I am determined to keep going and do so with a smile 😁
You’re definitely not alone with this. Trouble is that people only see us on ‘good days’ !! It’s invisible to them too if our bad days are spent home alone. It’s hard to know what to say when people tell you “hey you’re looking well!”
I have this really strange thing...when I have slept just 3-4 hours in the night work colleagues will say I look good! When I have had a better night, they say I look tired....
Yes that is an odd one.... my saving grace is my hair! All my friends like it and I literally do nothing with it - I don’t even brush it!!!
I got a sticker says "I might not look disabled.....but you don't look stupid so ......" Does the trick , from a very well known online shop , named after large south American River x
Oh that made me giggle 😂but I’m not sure I’d have the guts to put one on my car but I’ll have a look!
I know . Mines on home front door ! Tell the world , but I was really peeved one day ,
You are not alone. I had an active Sunday and Monday and today I'm absolutely knackered. I can't be bothered to get dressed. I don't feel depressed, I just don't have the energy to stand up.
It’s the weirdest thing isn’t it? I think we should create a new word to describe it... I can hardly think, hardly move, I keep missing chunks of time, I’m exhausted, zonked, wiped out, shattered all in one plus many more things I currently can’t think of or remember or have the energy (or be bothered) or care enough to say but if we came up with a word that would be a better way to articulate it to fellow strugglers (I refuse to be a sufferer (today anyway!))
Yes I live in my dressing gown and pj s even have to go out in clean ones as clothes in general are so uncomfortable for me. I like to once in a while really try and make an effort for an outing and people think there can not be anything wrong with you. They just don't see the struggles made every day. I hope you are having a better time at the moment with pain etc.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hot or cold cold painful feet ankles legs
How can you be okay one day and not the next? I don’t geddit!
Sorry but I have to rant…
Due to fibromyalgia I can’t cope with the stress of working but don’t think I’d qualify for PIP
Hello and help?
