How do you explain your chronic illness to others?

[FeeFiFoFiddlyDum]

I have ME. I’ve had it since I was 16 and I’m now 53. I’ve never been formally diagnosed as apart from 1 year when I was 16 (post EBV) and 1 year after COVID, I’ve been able to work. In those 2 years I was completely bedridden.

I work in a v high profile job. No one knows I have this. When I got sick post Covid I resigned from my last job as it involved travel and in office 5 days a week. I now have a job where I’m in the office 2 days a week and the rest of the time I’m at home. It’s still a struggle but I’m the breadwinner. All I can manage to do is work and I have to rest the rest of the time.

My ex boss really wants to meet up with me. I can meet up if it is planned a long time in advance e.g if I know I have to do a dinner on a Weds night I’ll make sure I’m resting on a Monday and Tuesday.

Ex boss is a spur of the moment person. He messages on the day to meet up but I can never do this and I sense he is starting to get really pissed off with me. I suggest a time way in the future but he says he never knows his diary that far in advance.

I’ve just got another message saying he can meet Monday or Tuesday but I can’t do that this week as I’m already out Wednesday. What would you say? I’m running out of excuses and I get it’s hard to explain not having enough energy to do everything you want!

I don't explain myself. I have chosen not to work in a high profile job. Been there and not worth it for me. I wouldn't be able to meet an ex boss unless planned well. If not it's a "no thank you".

I don't people will never understand

I wouldn’t explain my medical condition to anyone I wasn’t close to. That’s not ex boss territory to me. Why does he want to meet with you?

It would surely be easier if you did just tell him why?

I would just tell the truth. In fact, I often do. By disclosing disability as a senior leader/in a high profile job, you're setting an example to others that this is okay, and that you can have a chronic condition and a senior job.

He has poor boundaries and ridiculous and disrespectful expectations of anyone. This has nothing to do with your illness / health. Don’t tell him anything - say I need 3 days notice. Then rinse and repeat. Hold your ground.

I don't. If you have to, spoon theory can be helpful.

I can relate to this. I can’t go out more than 2 evenings a week and they must be spaced apart. I don’t know how to tell anyone that so always pretend I’m busy on the other evenings. It doesn’t make me feel great and I do miss a lot of stuff. Plus people in my life must think I have a lot more going on than I actually do!

I have told one group of friends (we hang out as a trio) but now they’ve stopped inviting me to as many things - because they know I’m tired so they’re trying to be kind. And that also makes me feel sad / shit. You can’t win!

Do you really want to see him? He does sound a bit annoying. Who can’t plan stuff in advance?

He can choose whether he has time in his diary. If you're a priority, he'll put you in and work things around it. Just say "I'm sorry, I can't do spur of the moment events, so it will need to wait until you can find a time in your diary that you can block out. Let me know when you're free."

People don't understand it's really isolating sadly

‘Sorry boss, I’ve got some health issues which mean I have to pace myself so I usually can’t do short notice. I know that’s the opposite of what works for you but I’d love to see you - so happy to put a placeholder in for xxxx and then you let me know if you’re free?? Or keep asking and hopefully we’ll find a time that works for both of us

I don't 'explain' my physical and mental health issues because I don't feel like I have to justify myself to anyone anymore.

There is so much stigma and ignorance around disabilities and long term health conditions in this country at the moment, especially because of too many politicians and media outlets trying to blame disabled people for everything and paint them as scroungers...

What I do these days is make sure I am aware of employment laws and disability rights.

In your case I would declare your long term health condition to HR then ask for an assessment by Occupational Health and for reasonable adjustments to be put in place. These adjustments should include your manager not expecting you to travel at the last minute.

I had to do that with my last employer when my manager kept messing around with my home working arrangements and was expecting me to travel almost 5 hours to the office to attend random evening events. In the end I had to make an official complaint for disability discrimination as they kept trying to ignore occupational health recommendations and my manager was bullying me. They gave me a financial settlement to avoid a tribunal.

The workplace can be a hostile environment for people like us but I am no longer willing to put up with poor treatment and judgement.

I usually don't. Because it's usually met with "we all get that" or "oh is that it? Doesn't sound that bad"

He’s an Ex Boss, I wouldn’t give a toss if he’s getting pissed off or not.

Just say to him “look, you are the one that wants to meet me, not the other way round, so I’ll tell you when I’m available and you adjust accordingly. If that doesn’t work for you, we’ll leave it”.

Some people, for one reason or another, just have more energy than others and plan their life accordingly. I don't think you need to explain anything. Just say you are busy that week and need more notice so you can plan things.