People who mean well but still don't get it

[Cat-a-Tonic]

I just need to vent about this. I know my mother means well, but she doesn't get it. She thinks my GI is incompetent because I don't have a diagnosis yet, and she seems to think that if I get a diagnosis that I'll be fine. She called me yesterday to lecture me about how I should change GIs because, as she put it, "You don't want to have to live the rest of your life not knowing if you'll feel bad tomorrow, or even in an hour." I was like, hello! That IS what the rest of my life is going to be, whether I get a diagnosis or not! Even if I get on some really great meds, I still won't know how I'm going to feel tomorrow or even an hour from now. Unless there's a cure within my lifetime, it ain't gonna happen! I'm doing the best I can and that's all I can do, and I don't need her to lecture me and add any more stress to my life!

I know she lectured me because she's worried. She just can't deal with me being sick and not having answers or a cure, so it's driving her a little crazy. But in turn she drives me crazy! And that's the last thing I need right now! I wish she could just support me without imposing her (sometimes terribly misinformed) opinions on me. Does anyone else have to deal with a family member like this, and if so, how do you do it? Do you just let them talk, do you say something, do you change the subject, do you just ignore them?

 

[dreamintwilight]

Aww, I can sympathize with you, Cat. My situation is a bit different, but makes me feel somewhat the same as you describe.

My mom works at an allergy doctor's office (she's a nurse). He is a GREAT doctor and really knows a lot about lots of things other than allergies. So, when we talk on the phone she'll tell me "Well, Dr. K thinks this...he said that this is better and you should watch out for this..." And I know he's not imposing his knowledge on me. My mom is asking him questions and he's saying his opinions and then it becomes the final word to my mother who must then advise me.

It gets frustrating at times. At first, I kinda felt like my mom didn't trust my GI doc to do his job. Now, I must mention she lives in Florida and I live in Chicago, so I'm sure it worries her that she's not nearby, but sheesh! It's like I'm still a kid sometimes with her. When she found out I went to the ER with an obstruction she said she was going to get on a plane and fly out to Chicago. I was like "I'm fine!" I mean goodness...it's not like I'm alone. I have my husband here.

As for how to deal with it...I do several of the thing you mention. I will let my mom talk and talk on the phone about what Dr. K thinks. But I've made it abundantly clear that my GI knows what he's doing and that I trust him. Maybe point out his credentials? I told my mom my doc was listed on the CCFA's website when you use the search option for GI docs in your area. I also pointed out the good things like how he seemed to udnerstand that getting too many CT scans weren't good. And he delayed my 2nd colonoscopy so I wouldn't have to go through so much until my new meds had a chance to kick in. Basically, point out the good stuff your doc is doing.

There is a point where I have to stand my ground and say "I am a grown woman, I trust my doctor. Please trust that I will be smart enough to know when to question him." That seems to have made an impact on my mom.

And sometimes I don't tell my mom the little things that I know will worry her, haha. She still doesn't always understand things. I've actually been reading some books on IBD and I already plan on sending the ones I like to my parents so they can read about it and learn more

 

[Cat-a-Tonic]

Thanks Marisa. At least your mother is getting her advice from an actual doctor - my mother seems to get most of her advice from her cousin who has celiac disease. My biopsies tested negative for celiac, but because of her conversations with her cousin, my mother thinks that if I went gluten-free, that my symptoms would all vanish. (I've entertained the idea of going gluten-free, but I already have a frighteningly limited diet due to my symptoms and lactose intolerance - I might starve to death if they take away my breads & pastas!)

It's just weird to me because my mom is otherwise very level-headed and not a worrier. My dad's the big worrier but he's been much more supportive & less intrusive than she is. He's been the one who says "let me know if you need anything" whereas she's been more like "you should do this and this and this." It's kind of a weird role-reversal for them!

That's sweet that your mom wanted to fly out to Chicago to see you. And that's nice that you're sending them some books so they can be better educated on IBD. Like I said, no diagnosis here yet, so I would feel a little weird about getting my parents a book on IBD and then have it turn out to be something else. I guess I will just keep letting her talk until I do get a diagnosis, and then I'll get her a book (and tell her to stop listening to her cousin so much, ha ha). Thanks again for your reply.

 

[dreamintwilight]

Oh, well, I guess I forgot to mention my dad who gets all of his advice from his friend who has IBS. I've repeatedly told him Crohn's is a form of IBD, which is decidedly different than IBS. Thankfully, he doesn't send me too much info about it. But, it's still pretty annoying. It's like can't you do your own research rather than just go by hearsay for someone else's experience, especially with a totally different disease! Haha

Then there's my sister who says "at least it's not cancer" and keeps asking if there are alternative holistic therapies rather than the convention medicines. Yeah, I'm all for healthy and holistic, but I know that's not going to get me and keep me in remission.

It's frustrating because I know everyone tries to be helpful and they mean well, but it is frustrating when you've got people from every direction claiming they know best.

Yeah, my mom actually flew out when I ended up in the hospital the first time and was there for 12 days. That was just before I got my diagnosis. While she was here, she said one of her coworkers (who has Crohn's) was convinced I had an ectopic pregnancy and was telling everyone at the office that's what it was. Well, big surprise, now that it's confirmed I have IBD she's the expert on how i should deal with it too. Haha.

Your mom sounds similar to my mom in the way that she doesn't tend to worry about things. Maybe it's their way of trying to deal with a situation they have no control over. It is frustrating, but I've tried to just let my mom talk. It makes her feel better and in the end it's my decision what I do.

Feel free to vent though! Better to get it out than ruminate

 

[Cat-a-Tonic]

I'm still figuring out how to do the "quote" thing, but you said "It's like can't you do your own research rather than just go by hearsay for someone else's experience, especially with a totally different disease!" And I totally agree! Even with the same disease, from reading these forums, I've learned that we've all had drastically different experiences, so trying to compare IBD to IBS is just ridiculous. You can barely compare crohn's to crohn's since we're all so unique!

And on the subject of IBS, one of my more distant relatives once told me he knows what I'm going through because he's got IBS. His big problem is that he eats WAY too much at one sitting and gets a tummy ache afterwards. That's about it. So he stopped eating so much and now he's better. And he thinks he knows what I'm going through? I ate half a banana and then had to run to the bathroom 10 times and I was in massive pain! Not exactly the same as overeating and then feeling urpy because of it. So yeah, I'm with you, I really dislike when people think IBD = IBS.

And I've had that experience too, of someone saying "at least it's not cancer" to me. One of the first things my GI told me was that it would be very, very rare for someone my age (30) to have colon cancer, so it was never a concern of mine anyway. So I was confused when one of my co-workers seemed really concerned and then really relieved when I told her it wasn't cancer. Honestly, some days I think I'd rather that it were cancer, because at least that can be cured/put in remission (and isn't so crazy hard to diagnose!). It has an end and doesn't have to be chronic. And then when I have those thoughts, I feel really weird for sort of wishing I had cancer! And then I start to wonder if maybe I really am going crazy, ha ha.

 

[dreamintwilight]

Yeah, I mean we ARE at a risk of developing colon cancer more so than others without bowel problems, but that's something most doctors worry about once you've had Crohn's for at least 10 years.

I mean, don't get me wrong. I'm not saying our disease is worse than cancer. I won't make the same mistake others make s=in saying that since I do not know what it's like for cancer patients. I just wish people could be just as understanding and sympathetic to what we go through. Some of the things I've read on here about people's experiences sound just as bad as cancer, if not worse!

I guess the best way to combat people's ignorance is by spreading awareness and knowledge about it so people will be as familiar with Crohn's as other diseases like cancer. I admit I had never heard of Crohn's before being diagnosed and might not have ever heard of it if I hadn't been diagnosed. I suppose, in a way, we ca be grateful we have the opportunity to be more empathetic to people who suffer in general

 

[Cat-a-Tonic]

I had heard of crohn's before I got ill, but I had only heard of it because my aunt (by marriage) has crohn's. But she didn't talk much about it before I got ill, so I didn't really know what the symptoms were or how awful it could be. (Now she & I talk all the time about it, and she's been one of the best & most supportive people.) I think that a lot of people don't talk about it because most people don't want to hear about or talk about diarrhea and vomiting, which is understandable. But it also causes a lot of people to be ignorant about IBD.

I remember seeing a TV commercial a few years ago for some crohn's medication (don't remember which one), and the actors in the commercial were so vague, saying things like "the pain is bad" and "I couldn't leave the house today" but they never said WHY they couldn't leave the house, and I remember being confused at that and wondering if crohn's was similar to the phobia of being outside! I guess it's not a good marketing plan to make a commercial saying "I had diarrhea 20 times today and I can't stand up because of how much it hurts", but then at least people would know what CD actually is instead of being so vague.

On the subject of cancer vs. IBD, the only other IBD that I know of in my family was my great-grandfather. He died decades before I was born so I never knew him, but I was told that he had ulcerative colitis, cancer, and tuberculosis - all at the same time! So on days when I feel really bad, I try to think of him and what he must have gone through. I can't even imagine, but just thinking of him helps me put my own pain and illness into perspective. At least I've just got one awful illness to deal with instead of three!