To feel down when people say I look well with a chronic illness?

[RunkleC]

I am hesitant to post here as I know how brutal AIBU can be, but I just need to get it off my chest and maybe someone has some helpful advice on how to not let these comments get to me?

I was diagnosed with endometriosis 7 years ago and diagnosed with ME/CFS a couple of years ago. I ignored the ME diagnoses, refusing to believe it and instead put my symptoms down to the inflammation that’s always in my body due to endo. Both of these conditions are chronic and I just have to try and manage them. However, work has always been difficult for me and leaves me feeling quite unwell but I’ve been pushing through. In February I couldn’t push through any longer and ended up bed bound, signed off work for 4 weeks while I rested and tried to feel better.

I am now back at work but I have had to be really clear with my boss that my issue is chronic and isn’t something that’s magically going to get better, and so I have had reasonable adjustments put in place and I am currently on a phased return. My boss has been very understanding but other people at work who I would consider close work friends keep saying things like “good to have you back, you look so well!” But I’m not well. I don’t want to be depressing and doom and gloom so I try to just explain as best I can but they just keep coming back with “but you can’t even tell, you look great” and these comments upset me so much. Because I was scared of people not believing me because I don’t look ill, and this just reinforces my fears. I know it doesn’t matter what they think, as long as my boss understands and is being supportive. But I can’t help the comments affecting me. I don’t think badly of these people, because I know that their comments are said with good intention and they’re trying to be kind and make me feel good about myself. But when I’ve been up in the night in pain and am so fatigued and dizzy that I’m wondering how I can get through the day, and know that I’m going to spend the next few days in bed, for people to be like “wow you look so well” is really invalidating for me and doesn’t make me feel good at all. Especially when I explain that what I have is chronic and I’m not exactly recovered, their responses just feel dismissive and like they don’t believe me.

I know some people are going to just tell me to ignore them, and they’re just trying to be nice. but my brain doesn’t work that way. I end up just saying thank you and moving along. If anyone else also has to deal with this, how have you learnt to not be affected by it?

I do understand where you’re coming from OP. I’m reaching the end of my cancer treatment, and I know it can be frustrating when you feel awful and people tell you you look so well. I think it’s because I’m thinking of all the things they’re not seeing, like my mastectomy scar and bald head under my wig. The hidden things you need time to come to terms with, while at the same time being very grateful you are alive.

BUT it is nearly always coming from a good place of care and concern, and often people saying it are deep down feeling relieved to see you look ‘so well’. I always smile and say thank you then change the subject.

I hope you find help for your endometriosis. I had mine laser removed which finally gave me relief. Any fellow sufferers will know exactly how you feel, no matter how well you look

I absolutely understand this op and suspect those who don't haven't experienced the isolation and distress that comes with dealing with a chronic illness.

Gently you need to stop posting snipey comments like this, or people will think you’re a knob.

I think it's perfectly normal, while you adjust to your new reality, to find it difficult wrapping your head around the enormity of what you have to deal with on a daily basis if other people treat it as a tiny thing that looks like it doesn't even exist. That's a definite disconnect there.

Give it time. They're not doing anything wrong (arguably, dwelling on your issues or validating them by saying you look like shit actually and should go back to bed would be even worse!), they're being complimentary - and lucky you that you don't look as unwell as you feel! I just think maybe you're not where you need to end up, yet. And you do need to get there because these are your issues: everyone has their issues to deal with, and nobody should be looking for external validation anyway.

I understand what you mean. You don't want to look 'ill' but also dont want to look fine...

I feel the same at times - I have Crohn's and I think a lot of my friends and family either forget or think im fine (which is okay, I dont expect them to be thinking about me 24/7!) But sometimes when im really tired or flaring and sore, I dont like to hear things like 'you're looking so well!'

I think a lot of the time people just see that you're not at deaths door, dangerously underweight or you've covered up your white face with makeup, and they point out you look "okay"!

They are trying to be positive and pay you a compliment. It strikes me that you are feeling a bit guilty or ashamed that your employer has been accommodating. And it is hard not to when the media go on about people on sickness benefits living the life of Riley. But you know that is not you. And they know that's not you. What would you rather they say? You look good considering? Try to shift that sense of shame and look forward to enjoying be back with your colleagues.

I’ve got endo really badly and have had surgery. I still look fine, it’s absolutely possible. I work almost full time but no one sees how exhausted I am at the end of every day apart from my DH really. I don’t think it’s a condition that necessarily makes you ‘look ill’ albeit I’ve been told I look tired occasionally. Why are you taking offence about it? It’s just people being polite.

I'm being treated for cancer and quite frankly I look like I've been dug up from the grave. People constantly tell me how well I look, I just smile. The thing is in their place I'm not going to say hey Windy you're looking rough today, so I get it.
At the same time I do often feel pretty shit and I don't always want to downplay it and sometimes I need allowances, but I don't want to whinge and y'know sometimes a bit of sympathy goes a long way. But also sometimes you feel if you don't say how you feel, then people go on expecting too much.
It's a bloody minefield really.