“Yes, my chronic illness interfere with everything – everything,” is something you probably find yourself saying a lot, because let’s face it – unless they are living with chronic illness then no one truly understands.
And when it comes to having a social life (or trying to, in my case!) then you may find it gives out mixed messages.
If people see you out and about enjoying yourself (God forbid!) then they may question the validity of your illness or symptoms, particularly if you have been off work or in hospital recently. Yes, it really does take something this small to have people question you.
Clearly, you should not be penalised for having any type of social life, but it is often the one thing that prompts people to judge us. As if we weren’t already limited in what we could do!
Before I was poorly, I was out with my friends every weekend and we literally spent everyday of the summer holidays doing something fun – camping, shopping or movie marathons, anything that meant we could have a proper laugh together. As we got older we’d go on nights out, experience clubbing at university and things like New Year and Halloween were big excuses for us to get together and have a small party. Even when I look back at when my husband and I were first together, we’d go out for dinner frequently, make trips at weekends and go on lots of romantic breaks away. But the sicker I got, the less these things happen.
Now, when I come home from work, the last thing I want to do is go out for dinner or do a bit of late-night shopping because the pain has either been playing up throughout the day that all I need is rest or because work has triggered my pain and I need to get it under control. Weekends are spent resting, and the last few of them have seen me unable to move from the sofa because of my cyst/Endometrioma ruptures, and doing small activities so that I am not in pain before I even get to work. Things like work socials are often too complicated (I can’t eat the food, it’s a late do etc) and I am on so much medication that I can no longer contemplate having a glass of proseco when out with my friends.
I may sound like I’ve become a bit of a hermit, but making the hard choice to cancel plans or deliberately not arrange any has meant I’ve been able to enjoy the weekend or the coming week more because the rest has done my insides some good. And often, it really is a hard choice – I think a lot of us with chronic/invisible illnesses are viewed as unsociable or unable or incapable of doing anything, when actually it’s the complete opposite and we are just limited. Limited because sometimes doing too much or doing certain things will cause us more problems than it’s worth. Limited because our bodies are no longer what they used to be or our priorities have changed. Limited because we are trying to avoid further flare ups or sickness absence from work.
The other thing that sometimes plays on my mind is how my employer may view me if they see me or realise that I have been doing x, y and z over the weekend, when I am struggling to work at the moment. Of course, it really isn’t any of their business and what you do in your own time is completely personal and up to you, but it does make me think. I’m judged enough already so I’ll often find myself reasoning why I did something in my own time when I honestly shouldn’t have to. But I know I am not the only one who does this.
I have seen so many posts on my Endo Bunny social media accounts from people who went away or out for a weekend, only to find they were questioned by family/friends/colleagues when they returned, or weren’t even invited to gatherings with their friends because “they never come anyway” and that is so sad. Just because we find it hard to do some of the things that “normal” or “healthy” people do, it doesn’t mean we should be excluded altogether.
These posts make me see what others need to know;
- We want a social life just as much as you do – we don’t choose to be stuck in bed or on the sofa
- Activities can be adjusted, always. It would be great if anything we are invited to could be flexible or user-friendly
- Just because we have to leave early or not do specific things with you, does not mean we are no longer the friend you used to know
- If you’re finding it hard to accept or understand what is going on with us, then talk to us! Being open and honest is always best.
- We don’t cancel plans because we are flakey – we are either experiencing a flare up, are really unwell or there is a genuine reason. We do not do it on purpose
- What we do in our own time is our business only. If you see us out enjoying ourselves, be happy for us!
- Our bodies will make us pay for choosing to be social – keep that in mind.
Having a chronic illness literally impacts every single part of your life – it dictates when you are fit enough to go out, it dictates what you can do and it dictates what you are able to do. I think it is such a shame that we are often viewed as “boring”, “flakey” or “unsocial” – if people understood that it’s not just a case of wanting to go out, it’s about choosing whether we are well enough, then maybe there would be less people abandoning us or questioning us.