When you first get sick, you will experience two different types of people. There are the ones who support you and understand. Then there are the ones who are always trying to heal you, discounting how you feel or getting frustrated when you are not getting better. Most of the time, those kinds of “friends” have no idea what you’re going through and they will try to ignore it. They think you can just turn on and off the ways your body affects you!
There will be ways you can tell the difference between these types of friends. The latter will usually ignore what you say about being sick and only hear what they want. They get upset with you when you have to cancel, and worst of all they try to make you feel guilty for being sick! I have not figured out yet if it is because they can’t deal or if it is because they are tired of hearing it. But when you have to cancel for the twentieth time, you feel like you need to give an explanation. Then you either get ignored or worse: they ignore what you’re saying and think only of themselves, replying with something made to guilt you!
The friends you have who are supportive will still invite you out and try to include you; however when you can’t make it, they understand and they do not throw a fit. They say, “I get it” and “I hope you feel better!” When you get sick you never want to accept an invite or commit to anything because, to be honest, I can’t tell you from hour to hour how I’ll feel – and that goes for many of us with chronic illness. You may feel like if you do accept that invite then you are just going to inconvenience someone else because you know your body and what your limits are. However, you have to also deal with those that don’t get that and get upset when you say you can’t go because you know your limits.
What I don’t think generally “healthy” people understand is that I would love a night out. I would love to throw all of my pain away and have a brand new body and stomach! I would have drinks and just dance, dance, dance. However, the reality for me is if I do that then I will be very sick and could hurt myself very badly. Having Ehlers-Danlos syndrome (EDS) and being in that kind of environment means I run the risk of dislocations. I’d have the pain alone to deal with, plus the issue of what the bathroom situation is if I get sick. My condition is serious and I even have alcohol intolerance. Plus, my spine puts me in a living hell, so sitting in a bar or standing in a room are things I cannot do! And there are probably 20 other things I could think of to add.
When you are sick you have to think about so many more things that most people do not have to deal with. And most of the time I don’t go out because I worry, what if…? I would do anything to go back to the days before, but I (and many others) can’t. So please, still invite us but if we can’t make it, please don’t make us feel worse. We can also modify to accommodate our bodies. I would love to have a pajama party with you at home instead of going to the bar!
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Thinkstock photo via lorenzoantonucci.