nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

We want to hear from you: please tell us about your experience of the online community.

I have ME and long COVID. Anyone got tips on dealing with guilt of having an invisible illness?

AliceSpoonie94

Hi everyone ?? I’ve never really been a part of a community like this before. I was only recently (March this year) diagnosed with ME and I also suffer from long covid which is obviously pretty new as well haha.

I guess it’d just be nice to be able to talk/rant to others who feel the same as me. It’s pretty rough as I work full time and feel like everyone constantly feels like I’m faking my illness as I’m quite high functioning on my “good” days. My boyfriend is exceptionally well supported and has never once made me feel like I’m faking. I’ve actually never met someone so kind, which is lovely! But I do get guilt from him having to do so much for me.

Im also at risk of potentially losing my job due to having to take lots of sick days and my job role is very physical and I work with animals. So I’m quite stressed about that as well as not often feeling well. Anyway ???‍♀️ If anyone has any advice Re: the guilt of having an invisible illness or advice for the job I would be very grateful but I just came here to talk to people who may be suffering in the same way ?

Find more posts tagged with

Comments

janer1967

Hi and welcome to the community

Feel free to join in or ask any questions

I have experience in employment issues as a hr manager for many years so happy to advise if you have any specific questions about your job

Cher_Alumni

Hello @AliceSpoonie94 and welcome to our online community, it's great to have you with us

How are you doing today?

Oh heck, having M.E. and long covid must be challenging, have you got enough support from your GP or a care team? It's great that your boyfriend is a good support. I also have an 'invisible illness' and can relate to that feeling of not believed by others, due to superficially looking fine some days. I think it's important to remember that we can't control others opinions of us, and can only educate where possible, so please don't worry too much over what people might be thinking. The person who matters here is you. I wonder if browsing our Invisible Impairments category to read other members' stories might be helpful?

In terms of your sick absence, what have work said? Would implementing some reasonable adjustments to help you manage better be useful? Here's Scope's webpage on Reasonable adjustments at work to learn more about that.

Please let us know how you get on and feel free to join in any chats you like, we understand what you're going through and are here to support you

Ross_Alumni

Hello @AliceSpoonie94

Wishing you a warm welcome to the community, it's lovely to meet you. Your partner sounds like a super person and I'm glad that you have him as such a supportive figure in your life.

It sounds as though you've been through an awful lot recently and fingers crossed more positive things are on the horizon. Have you had any kind of conversations with work about thow they can accommodate your conditions and help you to thrive in your role despite them?

AliceSpoonie94

Thank you so much for the warm welcome everyone! It’s really nice to have someone validate the way you’re feeling and just a little understanding of going through something similar.

My workplace haven’t been bad at all, they’ve been supporting me with adjustments to my duties and reduced workload but they have stressed it’s not something they can do long term especially if I’m still needing to take days off despite it. And my line manager has told me they would try to offer me another role but I’d have to interview for it and it’s a higher ranking role than what I’m currently in. My fear is that they’d just let me interview and decline me as a way of getting me out without discriminating against me…

I just feel a little paranoid with it I suppose. Tied into those feelings of guilt and a bit of imposter syndrome like my mind keeps telling me I’m fine but I’m not. It’s all overwhelming and feeling ill all the time on top of that… I just want to say “I don’t care” to everything because from my perspective nothing should come above me health.

Sorry for the rant ?

Ross_Alumni

Yes I can understand why the work situation is causing you worry @AliceSpoonie94, I would hope that they wouldn't try to interview you for the new role only to reject you purely so they can get you out.

I understand why you feel paranoid about it, and it seems as though everything has had an impact on your mental health. Do you have techniques in place to effectively manage your mental health at times like this? Is it something you receive support for at all?

AliceSpoonie94

Ross_Scope said:

Yes I can understand why the work situation is causing you worry @AliceSpoonie94, I would hope that they wouldn't try to interview you for the new role only to reject you purely so they can get you out.

I understand why you feel paranoid about it, and it seems as though everything has had an impact on your mental health. Do you have techniques in place to effectively manage your mental health at times like this? Is it something you receive support for at all?

Thank you for your support! Yes I’m currently receiving CBTherapy for my worry/anxiety so I’m hoping I can get it under control again. I also take medication under the supervision of my GP. It’s just been a taxing 18 months for sure!

chiarieds

Hi @AliceSpoonie94 - & welcome to the community from me also.

You have been through a lot, & I would agree that your health does come first, & I bet your great boyfriend feels the same. Many of us have invisible disorders, myself included, & I can only echo what Cher has said, & I must admit I don't worry about what other people think, whilst finding some people absolutely lovely, & helpful.

I hope you can get something sorted out with work, & kindly let us know how you get on, thank you.

Tori_Scope

Welcome to the community from me too @AliceSpoonie94

I'm glad to hear that you're accessing some CBT, and I hope that it helps you to get things under control again, along with the medication. How have you been finding it?

Just to let you know, I've renamed your post and moved it into our category for discussions relating to invisible impairments.

AliceSpoonie94

Username_removed said:

Intrigued by the idea that either condition is in any way invisible.

I think I understand where you are coming from but by definition they are both invisible illnesses as they are chronic illness without obvious cause or medical explanation (long covid is kind of it’s own thing entirely). My GP told me that some medical professionals don’t even recognise ME as a condition.

But yes, to me it seems strange that anyone can’t see how they are impacting me. I also suffer from mental health issues, which are invisible illnesses also.

AliceSpoonie94

Tori_Scope said:

Welcome to the community from me too @AliceSpoonie94 I'm glad to hear that you're accessing some CBT, and I hope that it helps you to get things under control again, along with the medication. How have you been finding it?

Just to let you know, I've renamed your post and moved it into our category for discussions relating to invisible impairments.

Thank you! It’s been interesting so far. I’ve only had one session but the therapist is quite insightful and has given me some homework