I know lately I’ve been posting on here a lot less. I was a lot more motivated to write when I actually had energy and felt better than I am lately. I don’t think I realized how much this has all taken a toll on me until recently. I can nap anywhere at any time at this point. It’s like a super power. Instead of taking my lunch break, I force myself to nap for just under and hour just so I can make it through a work day. It’s ridiculous!
But I wanted to take the time to talk about something that’s really been bugging me lately. I am part of some FB support groups for ulcerative colitis but I think this message could be for any invisible illness. And it’s the simple message that just because someone doesn’t look sick, doesn’t mean they’re not okay.
It breaks my heart reading stories about people losing friends or significant others simply because there’s a misunderstanding or a lack of understanding I should say. How we look on the outside DOES NOT reflect how we feel on the inside.
It’s not quite like cancer or an illness like that where you can physically see how debilitating it is on a person, but sometimes that doesn’t make it any less severe as cancer. Now my ulcerative colitis isn’t as bad as cancer I could say, but the scary part is if you don’t control it could lead to colon cancer. More than that, there are hundreds of invisible illnesses that have unfortunately taken lives or have inhibited someone from living a good quality of life. It shouldn’t take someone getting so sick that they’re in the hospital, in a wheel chair, or worse for you to realize how sick they are.
Take their word for it. Commend them for being able to go out for a little bit when they are having a rough time. Give a pat on the back to the millions of people who are suffering but are able to work, raise a family, go to school, ect. That is so incredibly hard, especially since fatigue is a common side effect for so many invisible illnesses even when you are in remission. Understand when they have to cancel on you last minute, not because they don’t like you or don’t want to go out, but because autoimmune diseases can change in less than an hour. Praise people for being so brave with whatever battle they are facing and commend them for waking up every day and doing what needs to be done. And even on days where all they can do is eat and sleep, tell them its okay- we all have bad days.
Ulcerative colitis has no cure. There will be a time where I will feel better. Where I am not running to the washroom 20+ times, where I am not completely wiped from a shower, where I can feel confident going out and about again without a washroom being within a meter of me, where I can actually enjoy food again, and hopefully travelling! There are days even now where I look good and I can get done what I needed to. But not now or even when I’m in remission does it mean I’m not entitled to bad days. My life will never be the same normal it was before, and it kills me that people don’t always realize that. And even when I do get into remission, it doesn’t mean it will never come back. I’ve met people who after 5 or 10 years have gone back into a flare up. Or who have suffered some symptoms from the disease but aren’t in a full flare up again.
It is so hard to get in remission. Trust me, I’ve been trying since January and I know people who have been trying for over a year. So for the people who are in remission, I am so incredibly proud of you and your body. Kudos to the both of you for finally finding something that works. But hey, you’re allowed to still have bad days. You’re allowed to have brain fog, to have joint pain, to be exhausted beyond belief, to have tummy cramps, to feel nauseous, or even to get a really bad cold because of the medication you’re on. You’re allowed to get sad or angry from time to time. You’re allowed to cry. Your body is still different than it once was. Your body is still battling itself even if you are in remission, because there is no cure. It’s just managed.
And I hope your support system understands this. I hope they don’t tell you you’re being lazy on days where you’re tired. I hope they don’t tell you you’re being dramatic on days where you have joint pains or a bad cold. I hope they encourage you to stay in remission and admire your strength.
And if they don’t understand, I do and I just want to say good job.
You’re amazing.
And you will meet people who won’t understand. You will meet people who haven’t seen you at your worst so they don’t know how bad it can get. And that’s okay. Just remember at the end of the day, you don’t owe them anything. You don’t owe them an explanation if they don’t get it. You don’t owe them an apology for being sick if they can’t seem to see it. You just have to do what’s best for you and sometimes that means walking away from people like that.
I just wanted to get that off my chest. I will try to update more, but my butt is seriously being kicked by this. My boyfriend and I tried to go out for dinner two days ago because its been centuries since I’ve actually done that and sadly I only lasted an hour and a bit and I didn’t even make it through my whole meal. But I’m eating more and more so it’s progress.
Much love,
Bee.
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