I’m sure anyone with a chronic illness has been there. Where you find yourself apologizing for everything and excusing yourself for things that are usually out of your control. I find especially with invisible illnesses, it’s a lot trickier to tread around this. By definition I have a disability. Do I look like it? No? Can I function? Mostly. But somedays not so much. But in our society I am considered too functioning to be disabled. Yet there are some days where I can’t function, where I can barely make it out of my bed.
Yet here I am apologizing to other people for inconveniencing them. Why? I never asked to get sick. I never asked for my life to be so unpredictable day to day due to my illness, therefore often having to cancel last minute. I never asked for a disease that has reverted by bowels to have the same “holding it” time span as a toddler. Yet I apologize to the cashier for having them have to unlock their washroom for me, I apologize to the people standing outside the single washrooms for taking so long, I apologize to my friends or family for making them frantically look for a washroom while I hunch over in pain.
And usually I get the same answer, “it’s not your fault.” So why can’t I get that through my brain?
It isn’t my fault that my body has rejected medication left, right, and centre. It isn’t my fault that my average bathroom break is at least 15 minutes. It isn’t my fault that there have been days that I have gone to the washroom over 20 times. It most certainly isn’t my fault that my gas build up is so crazy that some public washrooms have been serenaded by my bowels. Same with my bowels just grumbling while sitting. It’s not my fault that a side effect of my disease and my medication is fatigue, so yes I do sleep a lot, yes I do need a nap, and no I don’t think I can last until 2 am. It’s not my fault that certain foods trigger me, so although it’s not an allergy, no I can’t eat that. I will literally bleed 20 minutes after eating it. And yes I know my order at Starbucks is a little more complicated, no I can’t have caffeine, but yes I will have decaf because I still like the taste of coffee. Let me enjoy the little things.
I’m still blindly navigating my way through my own disease. Some days I do pretty damn great, other days I do too much and pay for it later, and other days I just fall straight on my face. No one can really prepare you for the impact it has on your life and people around you. I can listen to other people’s experiences but even then, what works for some doesn’t work for everyone. Everyone has a different story.
I will not stop talking about my disease. I will not feel bad for asking for a second or third opinion. I will not, not ask a million questions because this is my body and it affects me. I will always advocate for myself and other people. I will post about it on social media. I will gladly talk about it in public. Because it’s not just me. It affects so many other people.
There are so many people who aren’t willing to talk about it for whatever personal reasons they may have. It’s not a pretty disease, it’s not a very compassionate disease (especially not like cancer), and it’s certainly not a mainstream disease. Not a lot of people understand it to begin with. But then we have to take the time to help people understand.
Be you. Unapologetically. Be who you are entirely. Flaws and all. Because it’s you who has to wake up everyday facing life the way you are. It’s you that goes through the highs and lows. People in your life can choose to walk away when the going gets tough. But you don’t get that choice. Chronic illnesses are usually a lifetime commitment.
So do what you need to so you can stay sane, stay happy, be functioning, and make your life easier.
While I know I shouldn’t apologize to my friends and family (but I probably still will), I will say thank you. Thank you for understanding, for day in and day out sticking by me, and for just being as accommodating as you can be.