Invisible illness

[Tdajp]

I have SLE and fibromyalgia. This week I explained to my line manager that I was experiencing a flare. He has suggested making me a badge with a picture of a flare which I wear when I’m not well thus making my invisible illness visible and colleagues would then know I’m struggling. Just wondering what everyone thinks about this request. Thanks

[Lisalou19]

Just a thought on this.....

rather than a badge, if you don’t have a uniform to wear. How about your represent yourself with a colour? I now wear bright pink if I feel horrible, a little reminder to myself that it is just a bad day.

I must say though , what a good employer you have to consider this xx

[Tdajp in reply to Lisalou19]

Not really, another suggestion was to make an appointment at the dignitas clinic!!

[Lisalou19 in reply to Tdajp]

Had to google that!!!!!! Seems extreme

I personally wouldn’t like the badge approach, but each to their own. Are you working full time? X

[Roarah in reply to Tdajp]

I assume your supervisor was only referring to dignitas for palliative care options! I use palliative care services for my illness it has been very helpful infact. It is not only for terminally ill. It was offered to me in the hospital after suffering a stroke.

[Roarah]

I am in the us so things operate quite differently. I prefer that my coworkers, other than my supervisor, are not privy to my illness at all so wearing a badge to me is uncomfortable and a bit degrading , but again culture and personal comfort levels vary amongst all of us so if you are comfortable and think the idea will help you to coexist with symptoms and work expectations you should give it a go. I hope your flare settles down quickly. Xo

[GlasgowHen]

I would be very uncomfortable with this. In fact I think your employer probably isn’t familiar with the disability and equality act. Why should you wear a badge? Almost equivalent to a dunce hat and sending you to the corner?! Or wear a badge when you are suffering from PMT or menopause?!?However I know how important it is to have understanding colleagues. Have you given your manager the lupus uk employers info? Could you have a little chat to your close co workers when you flare and explain what it means for you. I’ve has to do this as sometimes I feel flattened and very unwell but have a healthy looking steroid glow.

That said airports these days have lanyards for anyone with hidden disabilities to attract airport staff if extra assistance is needed. I’ve used this for my daughter and it was valuable through security when things got a bit fraught. Not sure if any of my rambles have helped in any way

[Milliecox]

I would not like to wear a badge and his comments about dignitas are demeaning - 'just a joke etc', only banter etc - he needs to know about the equality act, you need have adjustments to keep you in work. I would look at the employee disability passport concept (see online when google) although did not use when I was at work (did not know about it) it may be a helpful idea and it means you share the information with only those people you think can be helpful or 'need to know' if he sees things written down he may learn not to be so belittling. As everyone says do use the LUPUS UK booklets and here is a link to article that may help

ncbi.nlm.nih.gov/pmc/articl...

[Tdajp in reply to Milliecox]

Thanks - that’s really useful and makes me feel a bit better. I wasn’t sure if I was over reacting by thinking his comments were inappropriate. Will go google the passport stuff now x

[Milliecox in reply to Tdajp]

Good luck if you wanted a badge could base on London transport hidden illness badge but still not very specific so all right if you want a seat but otherwise not much guidance for on lookers - you may need to be on different duties when you have a flare

[Kath1]

Hi, I would definitely share the link to the employee section on the lupus website. That is what I did and I don't know if my manager read it but they have been supportive. I also sent an email out to the team I work with just to explain the basics and that sometimes I might be having a flare and a bad day. I shared the lupus link incase people wanted to look at it and I also said people could talk to me about it / ask questions if they wanted to. I got a very good response and the people I work with have been great but obviously it is up to you how much you want to share. I wouldn't like to wear a badge and you shouldn't have to but if you think it will help you then why not? If it makes life easier for you and you are happy then do it. Has your manager got occupation health involved? They might be able to put things in place to give you extra support regardless of what your manager says. I wish you all the best.

[Tdajp in reply to Kath1]

Thanks very much ❤️

[Jacqui296]

Hi

My daughter and I think it’s a great idea! You’re amongst colleagues/friends and if they are made aware of what the badge stands for it should work fine for you. Try it for a week and see how it goes, your boss sounds very understanding! xx

[Tdajp in reply to Jacqui296]

He really isn’t but it is good to hear that some people are open to the idea. It’s not for me as I don’t like being labelled or having my condition define me but I guess some folk would find it useful.

[Jacqui296 in reply to Tdajp]

Since I was diagnosed with Lupus and Sjögren I have sometimes brought these two subjects up in conversation (at the appropriate time and place of course) and I would say 90% of people have never heard of one or both of these. People need to be made aware of these debilitating illnesses as they are invisible to most and dare I say ignorant to the symptoms.

[Krazykat26]

Would this be the kind of manager that would like all women in the workplace to wear badges when they're menstruating? 😳 I think my reply would be something like..'what a great idea!! Guess what why don't u wear a badge to...saying ********!!' But then again I'm not great today..guess I'm wearing a flare badge xx

[Tdajp in reply to Krazykat26]

You would fit in well at my work as that’s exactly what my colleagues suggested I say to him. They even had a design in mind! My colleagues are great but managers not so much. You wouldn’t ask someone with Aspergers or diabetes to wear a badge identifying themselves. I really thought as a society we were beyond labelling people and making them stand out for having a disability. Again, I’m having a flare so not in the best frame of mind.

[Krazykat26 in reply to Tdajp]

I've made us a couple of badges..🔥one for u...n one for me🔥!! Badges anyone? 😹Xx

[Tdajp in reply to Krazykat26]

We’ve moved on to planning T-shirts for work that could well get us sacked 😂

[Freckle1000]

I must admit my first thought was - that you're boss has decided not to help you in any usefull way with the problem that you're having - and he's decided to humiliate you instead.

Sounds like he'd make a good Doctor.

[junemc]

To me this comment sounds sarcastic and unsympathetic. Could you tell from his tone of voice and manner whether he meant this kindly or was being sarcastic?

[Tdajp in reply to junemc]

He genuinely thinks it’s a great idea. Not sure what he would expect others to do if I wear the badge. It takes a lot to silence me but I honestly felt really awkward and didn’t know what to say. Have thought of smart remarks now but at the time I just made my excuses and left. 🤦‍♀️