Insensitivity towards chronic illness

Morning all,

Good morning to all my OstoMates. I am thankful for this site; it has been such a big help. My question to you all is, what is wrong with people? I have had my years of problems with Crohn's. I have always worked and still work, even after so many surgeries that I lost count. The last one I did get a colostomy, which is not a big deal to me after everything I have been through. Now two prolapses, lung cancer which they got, peri-anal fistulas which I still have, and now problems with my legs. They think it's nerve ends from so many surgeries. I still keep going, just can't do everything I used to.

My problem is the people around me. They are insensitive, or maybe I am just taking their comments wrong. My friends still think I can do what I used to. I do poop out real fast. I don't make long-term plans anymore as I have had to cancel on occasions due to getting sick. If you didn't know me, you would never know I have a chronic illness. But I get comments like, "Are you sitting home feeling sorry for yourself?" or "What is your problem that you can't make it?" These are just some of the comments, and it is starting to piss me off. I am starting to wish that they would get sick more than a cold, to see how it is daily to get up, go to work all day, and have somewhat of a social life. I am 62 years old, not 40 anymore.

Like I said, what is wrong with people? I don't like feeling like this about other people. Am I missing something?

Thanks much,

Spade

Hi Spade, I can't believe that you work, socialize, and basically get on with life at your age. You are amazing! Some people of 62 years couldn't do what you do, even without your health problems. I get tired myself and I am only 45. I think that because you are getting on with your life and going about your business, people either forget that you have any medical issues or they can't believe that you are not sitting at home wallowing in self-pity like they would in the same situation. I think you should just keep doing what you are doing, enjoy life, and have fun. Rest when you want and party when you want. LOL Take care. Karen x

Honestly, Spade, I'm impressed just to hear that you make the effort you do. As a teenager, albeit a very sick one, I ended up alienating myself from all my friends because I just couldn't keep my end up, and though they were all very understanding and supportive we just grew apart because we couldn't spend enough time together. I can't tell you what's wrong with people like the ones you describe, but I definitely know what you mean. Some people think they're the greatest thing ever and could handle anything-- from disease to unemployment to having their home invaded, it doesn't matter-- and then wonder why everybody else can't be as perfect as they are in their own head. I agree I sometimes wish they could see what really happens when they're put in a hard situation. Some people just lack empathy, as well as sense. Anyway, I sound bitter but actually complaining from time to time helps me keep from building up resentment. What do you say to people like this? Possibly you need to be a lot more blunt with them, and even get a little angry. Might shock them into taking your illness seriously. All the best, Natalie

Hello Spade, The question you ask is a very pertinent one and I could go on for a long time about what I think is 'wrong' with human beings.(other animals don't appear to behave in this way!) My impression is that most humans are self-centred. They do not 'care' about other people so anything that affects them adversely is deemed to be abhorrent. Things that do not affect them are of little or no interest. Very few of them are interested in 'feelings' other than their own so they come across as insensitive- which is exactly what they are. Fortunately we have a site like this where people understand the problems because they face similar situations themselves and already 'sensitised' to the problems we face. It sounds as though you have coped with life very well so far and I would be confident that your views of other human beings are unlikely to get to quite the point of cynicism that mine have always been !Best wishesBill

Hi Spade, I can understand what you mean. Because people can't necessarily see what is wrong with you, they think that there's nothing wrong. To be honest, if they are asking hurtful questions like that, then I'd say they aren't worth your time anyway! Don't let them get you down! It sounds like you've been through a lot, so if you've made it through that, then you can make it through some silly comments from ignorant people! Hope you're doing well at the moment. x

My comment may look fine on the inside, but I am a trainwreck on the inside. Then I proceed to show the top of my bag, stoma, and 2-inch deep gully of a scar... This seems to shrink the big mouths down to size!

I am in a similar boat but I am on disability due to short bowel syndrome. I was in the bathroom so much they said I wouldn't be able to hold a job. Anyway, if someone comments to you about doing things I would just say after all I have had done and been through I am lucky to be doing what I am doing. If you can't understand that I am no longer able to do everything that is too bad. People are insensitive and because they are not in the same situation they cannot understand it. Just do what you can and be happy for that.

I have mentioned this to another member - The surgeons are happy to slice, dice and dissect....what about emotional aftercare????? We should be getting some kind of couch work.....don't you think?

I was just certified as an ostomy visitor. We contact doctors and hospitals and have them notify us when they have a patient going for ostomy surgery or thinking of it, and we talk to that patient about life afterwards. Then we are there after their surgery for them as well. See if there is someone like that available in your area.

Nancy Ann, how did you become an ostomy visitor? There was one wound care nurse when I had my surgery and she was out sick with malaria! Luckily, my stay outlasted her sickness and I was able to meet with her. She made a large impact on my attitude but I wish there were more people to talk to... maybe I could be one of those people for someone facing what we all have already faced.

Help me, Rhonda. I don't know where you live, but if you have a support group in your area, that is how I found out about being a visitor. I have had my urostomy for 50 years, so I figured I would be a good candidate for that. But check on the United Ostomy Associations website to see if there is a support group near you. Then go from there. Let me know how it goes.

At some point, I would like to be an ostomy visitor too. My local association (in Oregon) makes you wait a year after your ostomy because they say it's important to get yourself healed before you try to help anyone else. However, I didn't get a visitor myself! So it seems to me that perhaps they don't have enough people to do the job. Do I sound bitter? Maybe a little. I really would have liked to talk with someone in the first couple of weeks after surgery. Sigh...

By the way, I love Moonshine's idea! Show them your bag and your scar! That oughta shut 'em up!

Moonshine's idea rocks! :-)