43 minutes ago
Day 24 of the #chronicallyinspiringchallenge | Something I Want Others to Understand
For me, acceptance of my colostomy and health condition is something I take day by day, sometimes second by second and with that being said there are things that while others might see as being supportive or optimistic really aren’t helpful when said.
1) Please don’t ask me when I’m getting my ostomy reversed or suggest that everything will be ok because it can be reversed. Not everyone is a candidate for reversal and even if they are, the reversal surgery is harder on the body than the actual placement of the stoma. Furthermore, 30% of reversal patients end up back with an ostomy. The decision to reverse, if given, is not an easy. Even if I end up my with my ostomy for life there is absolutely nothing wrong with that and these comments suggest there is.
2) Please don’t offer me medical advice. I’m pretty sure if a diet change could have miraculously cured me and prevented the need for an ostomy my medical team would have opted for that treatment.
3) If you’re curious about my ostomy and what my life is like with one, just ask. But please be respectful when you do. I once had someone ask me how I bathed with it because they didn’t think they could. I left that conversation with extreme anxiety that I smelled bad.
3) One comment that rubs me the wrong way more than any other is “I don’t know how you do it”. Frankly, I didn’t have a choice. This was the only option left that provided me an option to live and it’s not always easy. I do it because I have to not because I want to.
5) Also, the comments about how lucky I am to have a husband that is so hands on in my medical care and is patient and understanding really irritate me. I would like to believe that faced with a similar situation that any spouse or significant other would do the same. To believe that someone who loves you would walk away and not step up to support their partner if illness or disability arises is what’s wrong with societies morals and values today.
6) Lastly, just be kind to everyone. You never know what battles someone is fighting behind closed doors.