Don't Feel Sorry for Me
Pity isn't as flattering as you think
I have Lupus. I've had it since I was 13 years old, and I'm now 23. I've been through it all - appointments, treatments, bloodwork, stitches - and I'm now in a relatively stable condition. I'm very tired all the time, but I'm managing.
Please do not pity me for my condition. I know it comes from a place of love, but the 'I'm so sorry you have to go through that,' or the 'that must be so hard, how terrible!' can be exhausting. I don't really want to be reminded of how life is stacked against me. I know I can't get a stable job, that I have to manage my time to accomodate my pain. My life is a constant balancing act between my health and my future. When I speak to you, I do not want to talk about my Lupus, but about myself as a human being.
I know it's hard. It can be awkward to know what to say to someone with a chronic illness, especially when you're an able-bodied person, but the words you say can often feel quite condescending. I don't want you to feel sorry for me. I don't want to be remembered as 'the girl with Lupus, oh how she must have suffered!' I want to be remembered for my words, for the impact I have on my community. I want to be remembered for my bad sense of humour, for my love of Nintendo games, for my bestselling three-part fantasy novel series (fingers crossed that one happens!).
My life is the only one I've ever known. I'm used to the pains, I'm used to being tired, I'm used to having to go to the doctors. Taking my medicine is as routine for me as your morning coffee is for you. We may be different, but we are equal. I still have aspirations that I'm moving towards, and though I move at a slower pace, I'll be damned if I ever give up.
I do writing commissions in between naps. I organise my days between my projects and my house duties. I cannot clean and work on the same day, but I get what I can done to the best of my ability. I'm writing a novel, taking on poetry requests, uploading articles to medium and vocal - I'm keeping myself busy. And when I can't keep myself busy? I'm in hibernation mode, asleep, resting, soaking my sore legs in the bath. My hibernation days often outweigh my busy days, but that is something I just have to deal with. You don't have to apologise to me for it, I'm an adult, I can handle it.
If you want to help but just don't know what to say, there are things you can do. Read up about chronic illness, educate yourself on what it really entails. Don't shy away from the details, don't turn your head away, but really try to understand. Go easy on your friends who have to cancel plans, do not take offense if they cannot text back. Remove any stigma that you may be unaware you carry.
Remember that those who are disabled are, and always will be, people. Rather than reminding us about how terrible our lives are, perhaps ask if there's anything you can do to make today a little easier. Sometimes all it takes is a cup of coffee or a funny conversation.
Thank you for reading.