Living with a chronic condition can be tough because you are dealing with it on a daily basis. What can make it even tougher is when no one really know what your condition is or how it affects you. You never truly understand until you get it yourself, right?
Maybe you have made a new friend or started a new job but none of your colleagues know about your condition and that’s fine, you’re comfortable with it like this. But then you have to rush to bathroom for the umpteenth time that morning or perhaps they see you taking your truckload of meds at lunch. And they start to ask questions. What do you do? Do you shrug it off and say it’s nothing? Or do you tell them about your condition, bringing awareness to them?
Now, just to be clear, no one is forcing you to tell your story to anyone. You are not obliged to tell everyone who asks about your health situation (or anything else for, that matter). Telling your friend or colleague that “it’s nothing” is a perfectly fine answer and they should respect that you don’t want to tell them and if they try to push the issue, they are in breach of your trust and are not owed anything (not that they were to begin with).
However, if you do choose to share your condition with them, you may find things are a little simpler to explain; for me, telling some of my colleagues that I have IBD (and a stoma) was somewhat unavoidable; I was having issues with my stoma that were affecting my ability to perform my daily tasks at work so a couple of my colleagues found out. Although I didn’t feel 100% comfortable about sharing such personal information with them as we had not known each other for very long, it did make my life a little easier from that point on; my colleagues who knew were more aware of what I was able to do (ie. lifting heavy things was a big no-no at the time) and I didn’t feel like I needed to explain myself if I was rushing to the bathroom or needing to sit down for a moment, having overdone it.
I know, it’s not our job to educate the ignorant but if someone asks, helping them to understand a condition that affects so many but is otherwise unknown to those who do not suffer with it will help raise awareness and may even make your life a little easier. It’s your choice though, please do not feel like you have to tell someone about your condition/s just because they asked. They do not have a right to that information, it is yours to volunteer if you see fit.
A couple of weeks ago I posted about a guy who questioned my use of a walking stick whilst walking home and I asked if anyone else had experienced anything similar.
I’ve had a couple of responses, all of which said they too have experienced some kind of judgement for being “too young” or not looking disabled enough to be using their mobility aids. Some of the prying questions shared include “what’s wrong with you?”, “what happened?” and “That’s just for fashion, right?” And I feel these are all incredibly inappropriate. People don’t questions those who have crutches due to a broken leg or a little old lady who walks upright but still has a walking stick, yet they seem to feel they need to “call out” those who look young and fit and healthy for using these same aids. It’s also no one elses business why someone is using a mobility aid yet people feel they have the right to ask and demand such information.
A few other things that people have had said to them whilst using their aids are “you don’t look handicapped.” and “you shouldn’t be allowed to work in public. You make people uncomfortable.” This is also really inappropriate and rude. Like I said before, it’s no one else business why someone is using a mobility aid but to say they make make you feel uncomfortable is selfish, unkind and, above all, completely insensitive. It is not our job, as chronically ill and/or disabled individuals, to ensure the healthy and able-bodied feel comfortable and happy around us. No one should be made to feel uncomfortable around other people but if someone in a wheelchair or using a walking stick makes you feel that way, then try to imagine how it must be for them. Don’t voice how they make you feel because it’s not that persons fault you feel awkward, they don’t control your emotions.
I know some people would advise to not say anything in these situations and I must admit, I’m not one for starting an argument or making a scene, but what do you think? Would you argue or answer someone if they questioned you for using a mobility aid? What would you say? Would ignore them?
Lastly, I want to say a huge THANK YOU to @maknaebias, @that-eds-life and @notsograndadventures for your contributions! You’re all amazing people and I really appreciate you sharing your stories with me.
I hope everyone has had a good and safe weekend so far. I didn’t do a lot yesterday but I was able to get some writing done, so that’s a bonus. It was nice to see my social media feeds were filled with World IBD Day posts as opposed to Royal Wedding posts. Not that I dislike the Royal Family, I was just concerned our awareness day would be smothered by the wedding which I’m glad to see it wasn’t.
My supplies for changing baggie: a new bag (obviously), scissors to cut the hole to the right size (28mm), clean dry wipes (devided into three to make them last longer), a mini bin bag to put the old bag and used dry wipes in, a small pot for warm water (used for cleaning the stoma and the skin around it), adhesive removal spray and barrier cream (to help with itchiness under the adhesive).
Today is World IBD Day! Here’s my fact sheet about my personal experience with Ulcerative Colitis.
You can make your own at Crohn’s & Colitis UK.
My Get Your Belly Out wristband and badge arrived today, in time for World IBD Day this Saturday 19th May.
Did you know…? Gas passes freely from the stoma which means it makes a good amount of noise, sometimes at the most inappropriate of times.“
Did you know… There are no muscles controlling the stoma. That means it does what it does best, whether you like it or not.“
Ostomy selfie for SelfieSunday!