Why do people think we can make ourselves better?

[UnXmas]

Does anyone else find it upsetting when people unintentionally imply that people are responsible for being ill, or at least for not getting better?

Have you ever heard someone say that a person beat cancer (or any other illness) because of their positive attitude or determination? Do they realise that this means they are also saying that if someone dies from cancer it’s because their attitude wasn’t positive enough?

It’s like when someone recovers from an illness and says it was because God answered their prayers. Does someone who doesn’t recover not pray hard enough?

This is the one that upset me recently: as some of you might have seen I’ve mentioned on this forum before that I’m infertile. So many times I’ve heard someone say the only reason they’ve coped with an illness is because of their children, and that if it wasn’t for their children they wouldn’t have made it. I’m sure this kind of comment is said in all sincerity - they love their children so much and it does feel like that’s the only reason they can only cope with Crohn’s (or any other illness). So are those of us without children to spend our lives in miserable sickness because we have no reason to motivate us into coping? Is that why some of us end up having multiple surgeries while others have none? Obviously it’s not, but why attribute positives to these things but not negatives?

I’m not really expecting answers to these questions, I’m just venting. Those of us with a chronic illness like Crohn’s in particular often have to put up with doctors and others telling us our symptoms are a result of our inability to handle stress or due to unhealthy lifestyles. Sometimes I just wish more people could recognise that our abilities to change our illnesses are limited. A positive attitude can only go so far before it becomes unrealistic delusion. Some aspects of illness – often the most major aspects – are just down to physical determinants and other factors beyond our understanding and control.

 

[SarahBear]

I definitely see how these comments are frustrating to you, UnXmas.

Personally, I just laugh if people imply that positivity, etc. cured them - or, even better, that a few minor diet alterations cured their great Auntie Darla's Crohn's. However, I do believe that keeping a positive outlook can make a difference in how you feel day to day, if not the overall progression of your illness. If you're focusing more on the good things, you're going to feel better for it simply because you're not dwelling on how bad you feel and how terrible things are.

I think that's what it comes down to, really - the attributing positives to things rather than negatives. It's a happy thought, so why not? I also don't think they always mean it quite so literally. I'll tell people my dog is the only reason I got through my diagnosis and the following months on Pred, but I don't believe that without him I would have just withered away and died. I would have just been much more unhappy without that distraction.

If people are making you feel as if your illness is in any way your fault, the best thing to do would be to remove them from your life. That's unnecessary negativity, and it it's really quite counterproductive. This goes for doctors, friends, and family. It can definitely be a tough thing to have to do, but your health needs to come first. I can't see or talk to my mother much at all because she's just too stressful and that's bad for me both mentally and physically. I have to put myself first.

 

[UnXmas]

Thanks Sarah. :ghug: There's no one specific blaming me for being ill - not anymore anyway, though I had to go through a very large number of doctors to find ones who don't!

I think I've just learned to become overly sensitive about these things. The other day I was watching some illness documentary on tv, and a woman with a chronic pain disorder was interviewed and saying she wouldn't be here without her children. I was watching with my parents (who are my carers - I have a progressive neurological disorder along with Crohn's and endocrine problems), and I felt awkward because I imagined my parents would be thinking that if only I'd had a family of my own I wouldn't be so sick and they wouldn't be landed with caring for me... which was not something they'd ever said at all, it's what I was thinking.

Perhaps I'll start telling people my dog is my reason for surviving too. :heart: It is worrying me that I'm treating her more and more as if she was my baby.

 

[SarahBear]

It's awful that you feel that way. I doubt your parents fault you for that. :hug:

I treat both of my dogs like babies and I see nothing wrong with it! Haha. It's a good distraction to have something to take care of and focus on - and even better that they can be independent for a while if necessary, so it's not too stressful to constantly be running around, doing this and that.

:hug:

 

[UnXmas]

Unxmas, I know this feeling exactly. I feel like I've been venting about my brother a lot lately, but long story short, he's a jerk. A few years ago when he needed a place to live, I let him move in with me. He repaid my kindness by being awful to me. When I tried to explain things about my illness to him, he wouldn't listen and would insist that I will get better if I just really wanted it and had positive thinking. He also told me I should look to him to be my "digestive role model" - whatever that means! He is delusional and just generally not a good person, so I cut off contact with him as much as I can. He no longer lives with me and I only really see him at familly gatherings. The stress he causes me is not worth trying to salvage any kind of a relationship with him. It's sad, but I basically have mourned the person he used to be and have moved on. Awhile ago he started taking a lot of drugs and it altered his personality or triggered a mental illness or something. He's no longer the brother I knew, he's a stranger, and I treat him as such.

My mom is somewhat similar. She's not on drugs and isn't nearly as hostile as my brother is, but somehow she got it in her head when I first got sick that I must have celiac, and therefore she has it too (long story - and yes, everyone in my family is apparently just a little crazy). So she gave up gluten and has insisted numerous times that if I give up gluten too, then I'll get better. That would be great, but gluten isn't a trigger for me (breads and pastas are some of my very safest foods!), and I've been tested numerous times and it's always negative for celiac (biopsy and blood test) and I don't think I even have a gluten sensitivity. But no matter how often I've explained it to her, she won't listen - she insists she's right. She also tells people she's been diagnosed with celiac, even though she's never been to the doctor nor had any tests for it.

So yeah, my family isn't exactly supportive, and my close family is just a bit delusional. Fortunately I'm pretty rational and I know I can't magically cure myself with positive thinking or removing gluten. And for what it's worth, I don't have kids either. I'm sure if I did, I'd probably feel obligated to say they're my reason for continuing on, but it's not like I'm going to give up and die just because I don't have kids. There are lots of reasons to keep on living besides children! So hang in there, and try not to compare your life to others'. Sending you a big virtual hug.

Cat-a-Tonic - I'm sorry you've had so much of this too. Is it really better when you cut family members out of your life? I've kind of been forced into relying on my parents for everything. Things are fine with them now, but when I was first getting ill as a teenager, they believed the doctors - who said I was anorexic and had no physical cause for my weight loss - rather than believing me. Following the doctors' directions, my parents basically treated me as if losing weight was something I could be punished out of.

In the psychiatric hospital treatment for mental illness basically worked on the assumption that if the doctors and parents could make patients' lives miserable enough, they'd recover from their "illness." So I'd be forced to stay in hospital, banned from going home, banned from seeing friends, going to school, etc. etc. So the idea that I was to blame for being ill and that I could recover if I wanted to was drummed into me right from the start.

I don't think I'm ever going to get over the fear that my parents might kick me out again because they might go back to believing I'm choosing to be ill.

So, I hear you on messed up family relationships! My parents never talk about any of this, I don't think they realise how I constantly worry about not being able to make myself better.

 

[afidz]

My family doesn't necessarily say that I choose to be ill, but my dad will say things like "its all up to you now, I can't do it for you" or " I got you the insurance now you just need to use it the right way"
First off, I have been doing this alone since before I was DX, so yea it is all up to me and you have never done anything for me in regards to being sick and second, just because I have health insurance doesn't mean I am just magically going to get better. What friends, family and doctors need to realize is that we do the best we can with the hand that was dealt to us. And if we had the support that we needed, it might lead to a more positive attitude that might lead to feeling better about our situation overall. No, a positive attitude is not going to make us healthy, but it can bring acceptance and peace.
My biological mom thinks she knows everything. Last summer, while talking to her about my current problems she cut me off and stated that I just need to change my diet. I need to eat a green leafy diet and to stay away from bread and pasta. Several things wrong with that statement. I got so mad at her because she claims she knows all about Crohn's because she dealt with it with my dad back in the day (yea, right, he has been in remission since he was 15. ) She knows nothing. And she claims that she is celiac although she has never been tested for it, and because she has a problem with breads and pastas then I must because I am her daughter.
Our lives are filled with ignorant people and unfortunately that too is the hand we were dealt. The important thing to remember is that you are aware of your health and how to maintain it to the best of your ability. If you can eliminate the stupid people in your life, then do so because the added stress is not needed.

 

[UnXmas]

Sorry you've had the same problem afidz.

Oh, and Cat-a-Tonic:

And for what it's worth, I don't have kids either. I'm sure if I did, I'd probably feel obligated to say they're my reason for continuing on, but it's not like I'm going to give up and die just because I don't have kids. There are lots of reasons to keep on living besides children! So hang in there, and try not to compare your life to others'. Sending you a big virtual hug.

I just wanted to clarify that I do think there are plenty of other things that make life meaningful besides children, and I know that some people do not want children for whatever reason. I don't think there's anything wrong with that, it's just that having children was what I'd always thought I would do growing up, and is still the thing I feel I want more than anything else. I wish my aspirations were more in line with my reality!

 

[zilla7777]

This is one reason why I love this forum, it feels like the light at the end of long dark tunnel being able to relate to people like you guys.

It's frustrating to hear the retort "everyone gets stomach pains."

If only there was something like those avatar hair connections where we could just synchronise thoughts with people...

 

[Cat-a-Tonic]

Unxmas, I haven't fully cut those unsupportive family members out of my life. I see my brother only when necessary (at family gatherings) even though we live a couple miles from each other. He's made no effort at seeing me more either - we haven't actually talked about any of this (it'd probably just lead to another fight) but it seems mutual that we are best not being around each other more than absolutely necessary.

As for my mother, she lives like 80ish miles away so it's fairly easy to avoid her most of the time purely based on distance. She calls me often, I rarely call her. When she calls me, I usually don't answer. She talks to my voicemail far more often than she actually talks to me. She is making an effort though, so I probably see her more often than I see my brother. Usually, though, when she comes to visit me it seems like seeing me isn't the top priority. She wants to go to her favorite restaurants and stores - my city is larger than hers so better food & shopping here than where she lives. And that seems to be the priority for her. At one point a few years ago, my IBD was acting up terribly when she was due to come visit for the day. I sometimes just have terrible mornings and feel better in the afternoons, and she was coming at noontime, so I took a gamble and didn't call her to cancel, hoping I'd feel somewhat better by the time she arrived. Well, I still felt terrible, and so we mostly sat on the couch and watched movies and chatted - which was fine with me, I felt like we were having a nice time. But she didn't - she kept making little backhanded comments, basically letting me know she wasn't having a good time and that I should let her know when I'm going to be sick (like I can know that). She never let me forget about that day, when she couldn't go to her restaurants & shops that she likes and had to put up with sicky old me on the couch.

So actually, I might be in a flare now, and I was feeling pretty bad on Saturday when she came down for a visit. I woke up feeling crappy but didn't cancel - I faked my way through the day. I looked awful in the face (huge bags under my eyes) and was shaky and weak, and I ordered a small plate of plain noodles when we went out to eat (obvious flare food) - but my mom and brother didn't even notice. And I guess that goes back to the main issue with my mom, she never really notices me or listens to me. It's all about her, what she wants to do, what she thinks, etc. She never noticed me growing up either (even during the 3 years I was anorexic as a teen and I became rather frighteningly thin, she didn't notice). So I don't have to try very hard to disguise a flare around her. But I can't get anything through to her either.

Sorry, that was way too long of a vent. Oh, back to the subject of having children. I never really wanted kids - the more I thought about it, the less thrilled I was with the idea of getting fat, sick, and stretched out just to create a human who I have to be legally, financially, and emotionally responsible for, and who will probably grow up to resent me. Now that I'm in my 30s, I do hear the clock ticking, but I'm still on the fence. I know my hubby wants kids, and I could see myself maybe having one, but I don't know if it's worth the risk of passing along my crappy health to another generation. I'd be perfectly happy not having any, honestly. I'm such an introvert plus my family is so screwed up, I really don't feel like I need to create more people to be in my life!

 

[UnXmas]

It's also frustrating to hear the retort "everyone gets stomach pains."

Oh yeah, I've heard so many people who know just how I feel because they've had some illness too. When I was first trying to get doctors to realise there was something wrong with me, one doctor told me that "everyone gets diarrhoea sometimes" - I've now had diarrhoea virtually every day for over a decade.

But doctors always seem to think they know the causes and which factors make my illness worse better than I do. They never ask, they just tell me how it is. So I had one doctor tell me it was problems at school that were causing my stomach problems, when I adored school and had got through the first eight or so years of school without ever having a problem with digestion. That was over a decade ago. Then much more recently I had a doctor tell me that my illness was bad now because I’d recently moved house. Which didn’t really explain why I’d also been ill in all the years when I hadn’t moved. I thought that with proper diagnoses and positive test results I’d no longer have to deal with doctors telling me that if I just handled stress better my symptoms would improve, but obviously it doesn’t make much difference.

But when I tell them how eating more and gaining weight causes my digestive symptoms to decline rapidly (and often permanently), they refuse to acknowledge it. The correlation between the amount I eat and how ill I get is incredibly obvious – and I’ve witnessed it enough times to know there’s no way it’s a coincidence. But they know that reaching a healthy BMI cannot possibly have detrimental effects, and so tell me that I’m wrong.

Cat-a-Tonic. No problem, I think I’m just using this thread as a general venting space for all my anger and issues, and you’re very welcome to join in, however long your posts are.

It sounds like we need our mothers to swap some characteristics! Yours didn’t even notice when you were underweight, mine was obsessed with it but unfortunately couldn’t grasp the cause. She could see the weight loss, but she couldn’t see my digestive problems, and however bad I told her they were, she remained concerned only with what she could see.

I never really wanted kids - the more I thought about it, the less thrilled I was with the idea of getting fat, sick, and stretched out just to create a human who I have to be legally, financially, and emotionally responsible for, and who will probably grow up to resent me. Now that I'm in my 30s, I do hear the clock ticking, but I'm still on the fence. I know my hubby wants kids, and I could see myself maybe having one, but I don't know if it's worth the risk of passing along my crappy health to another generation. I'd be perfectly happy not having any, honestly. I'm such an introvert plus my family is so screwed up, I really don't feel like I need to create more people to be in my life!

I think my one consolation about being childless is that I know I could never handle the responsibility, even if I was physically well. I’m just too incapable. I see my sister looking after her baby and I know I’d spend the whole time terrified, I’ve had so much experience of things going wrong that I’m always expecting disaster. I do love being an auntie though! I would just say though, that I don’t think your worries about passing on bad health should be a reason for not having children. I think lives can be very much worth living despite bad health. Being ill hasn’t messed up my life nearly so much as other people’s reactions to my illness, and if you did have a child your own experiences of illness would mean you’d make your child’s life far better than a parent who didn’t recognise or understand ill health.