No one will know you have an ostomy unless you make them privy to that information. So maybe you’re wondering: Do I have to tell people I have an ostomy? When should I tell someone I have an ostomy? Who should I tell? Do I have to tell my new employer? Someone I want to date?
The answer is: It’s up to you!
You do not have to tell someone you have an ostomy if you do not feel comfortable doing so. The only people that you really should disclose your ostomy to are medical professionals, your significant other, and people who help with your recuperative care. Since ostomies are still kind of a hidden thing, your medical professional may not be familiar with them – at least not in person. If you feel comfortable, show it to them if they want to see it. This could be your opportunity to educate them and spread awareness.
You should tell someone when you feel it’s appropriate. Telling a potential significant other is totally different from telling the person you sit next to on your next airplane trip.
It’s up to you to make the call about telling your employer. If you are already working somewhere and are taking sick-leave to have surgery, it’s likely you’ve already told them. Hopefully they were supportive and understanding. Maybe they even did a little research to understand better what you’re going through. Maybe that’s just an ideal world and doesn’t happen in every workplace, but it should! If you’re applying for a new job, it’s up to you whether you disclose that information. Maybe you put it on your resume to explain an employment gap. Maybe you put it on your resume in a round-about way if you volunteer at a lot of ostomy-related events. Maybe you leave it off completely. Maybe you tell your employer after you’ve proven yourself to be dependable and good at your job. That’s a similar strategy to the one I talk about on the Dating & Sex page for people trying to choose when to tell a potential mate.
The benefit to telling friends, family, and your employer about your ostomy is support. If they know you have an ostomy and you’re having a rough day, you have someone to talk to. Letting someone at work know can help if you find yourself with a leak at work and need to take care of it.
Immediately after surgery, while you’re recovering and learning about ostomies on the fast track, you may find it hard to hide. You’re walking slower and your actions are restricted, people might ask you what’s going on. You could simply tell them you had abdominal surgery. Often times, that’s not enough for a curious person and you find them asking what it was for. In that case, you can choose to say you’d prefer not to share, or you could just mention that you had your colon or bladder removed. You aren’t required to go into detail about the need to wear an ostomy pouch on your abdomen to collect waste.
Having an ostomy is a huge thing to deal with alone. Talking to someone can help ease your concerns, give you someone to vent to, and is just a good overall mental health practice.
My experience telling people has been really positive. I told pretty much everyone I ran into for the first 6 months because it was the center of my world and on my mind a lot. Guess how much rejection and negative feedback I got? None. If I think about it, I am sure I could think of a few people who were in touch with me more frequently then and who have lost touch since, but I don’t really blame my ostomy for that. Nearly everyone I have told has either been really supportive or told me they know of someone else who has one (usually an older family member). In fact, you’d be really surprised how many people have said “oh, my dad, grandparent, sister, other friend, has/had one of those”. It happens really often. Just as often, they say “what’s that?” and “wow you I didn’t even know that was possible!”. That’s been my experience, which is really fortunate. I hope you have the same positive experiences as I have with sharing the news.