Anyone else's family think they're doctors.

[jake2803]

Hi all,

I'm pretty new to this forum and this is my first post

I just wanted to vent some frustration really, I've got a family that try and second guess my disease and what the doctor's are telling me.

This incident refers to a case of tonsillitis. Bit of Background on me, I've got left-sided UC and current meds are : Pred 30Mg, azathioprine, Asacol, Asacol supps and enemas and other things for side effects of the pred. So i've just been to see my GP and been told I've got tonsillitis, now I'm usually a bit sceptical about these things but it's been really quite bad. So, I get home and tell my partner that I've got some anti-biotics to take to treat the infection and she tells me she doesn't think I should take them and it'll clear up with paracetamol and cough syrup, baring in mind I'm reasonably immunosuppressed at this point.

Part of me wants to show her what'll happen if I let the infection take hold, a trip to hospital can't be that bad, surely? She says it's because she doesn't want them to upset my UC, I just can't win.

This and the fact she thinks my meds are wrong because apparently it's far too long for me to have been flaring for six months. Anyone else think this is too long?

I just feel like people are trying to second-guess my disease. That and the fact that I work full time, and have a six months old son. When I get in from work, I get handed that baby because 'she's had him all day, therefore it must be my turn' and the second i complain of being fatigued or in pain I just get told to 'get on with it'.

I just feel like jacking it all in but won't because of my son.

Any advice and support would be very much appreciated. Thanks in Advance.

 

[Betsy S]

Your post made me smile...I don't know if they think they are being helpful because they are worried or what???

I think it takes time (years even) for families to understand how bad we feel. I think a hospital stay makes them wake up a bit more but sucks for us!!

Have you ever given her info about your disease state to read on her own? I had my whole family (husband, kids, parents, sister, nieces, nephew) all read about it so they would understand that when I say I'm tired or don't feel good I actually feel like I'm going to die. I told all of them at a Cmas dinner one time that no one wants me to feel better more than I do so they can help me by just being supportive in the ways I ask, when/if I ever do...

Just remember she is stressed, scared, worried and wants you well...she just might not know how to show it. Therapy might help too...we went to only like three sessions just so we could each share ours fears and be heard.

Good luck

 

[jdpar]

I feel your pain! I just got diagnosed in December of last year after a 8 day stay at the hospital. At the time I was in A LOT of abdominal pain and didn't have the diagnosis yet. And my boyfriend kept acting like I should be better and out of there. He just didn't get it. I don't really think that anyone truely gets it unless they've been there themselves. Just like men don't understand childbirth, and women don't understand getting kicked in the....ya know.... I agree with Betsy above. I have tried to talk to all my family (my 4 children, my boyfriend and my parents) about what I have learned about Crohn's and the things they can do to help me. There are some days though where I admit I just really hurt, I'm tired and I truely don't know what I want anyone to do for me, I just want to feel better. I am like you and have yet to go into remission. I also have yet to come to a medication to stay on that works and that I can afford. I have heard that there are some people who have chronic Crohn's and don't ever have a remission, but I hope I'm not one of these. (I hope you're not either!)
Today is my first day on this forum and it's really been a blessing. I have read so much and have already talked to people already and feel like this is such a great treasure I found. I hope you can find the support here too! Just know you're not alone!

 

[NurseAdam]

Heya Big hugs totally understand where you are coming from, I don't have any advice as I have not figured that part out yet. But I want to share my experience so you don't feel alone.
Im an Advanced Nurse Practitioner Specialising in IBD and Chronic Illness, I have had UC for 14-15 years. Yet my Mum still thinks she know more about the disease than me.
Spoke to her yesterday after being given new painkillers, she tells me you don't want to take them I have a neighbours friends distant cousin who may have died on it, o and she diagnosed me with IBS and being a Hypochondriac. Its all my fault for worrying.
So if you ever do find the answer pleeeeeeease let me know. lol

 

[mcjmalaboot]

This post made me smile too! Not because of what you are going through, I know that one its tough but because my family are great but this is what I get at work. I swear they are all dieticians and think they know exactly what I should be eating and doing. Please know you are not alone. I have started to do what the great minds above have done and really start and educate people around me. I have found it easier though to find the most suitable information myself. Like everyone on here we know there is so much info out there that it may be 'dangerous' and conflicting to let them go searching. Maybe have a look and find the right information yourself and sit down with them and get them to go through it with you. This has worked with some of my co workers but like anything it will not work with everyone. Good luck through. I hope you feel better soon.

 

[Kev]

I commiserate. I was in a quasi-relationship with an IBD nurse (at the time I entered into it I recall vaguely thinking ... most of my thinking is 'vague'... "What a perfect career for a g/f... She'll 'know' exactly what I'm going through, up against, I won't have to defend my life!!). Anyway, WRONG! The curse of this disease is that it is invisible. You can't see it... normally. The (now ex) g/f was a light sleeper... whereas I sleep like the dead. Anyway, my moaning N groaning in my sleep from the pain of my scar tissue didn't sit well with this lady. My 'noise' was... problematic.. for her. Surely, it couldn't be that bad... For the longest time, I tried explaining, defending, apologizing for any noises I made while asleep... but it was falling on deaf ears (given her training and background, I thought 'she' would/should understand.. but she didn't). Then one day, on a visit to my GI, ... I was asking, pleading, for an explanation from her as to why none of the trigger happy surgeons would consider surgically removing my internal scar tissue. To illustrate the problem she produced a page of colour photographs of my insides from a scope she'd performed. Her explanation made sense... so I finally dropped it... and I thought to myself... "If these photos convinced me, maybe they'd convince the g/f that my 'pains' were real, legit, beyond my control"... So I showed them to her... I mean, as a nurse I figured she'd been exposed to other 'shocking' stuff... I told her they were disturbing, and she didn't have to look. But she did. Ever see anyone actually 'blanche' (go pale)? She did... I think up to that point, somewhere deep inside, she really didn't have faith in my disease... (although why anyone in their right mind would feign Crohns... oh, 'right' mind... maybe that's why she doubted me?... and the surgical scars were all makeup).. OK, being a little facetious with that last bit... However, the 'reality' is, that people who don't have it... and can't see it... can't feel it, simply can't imagine how bad it can be. Even someone like a trained, experienced (as it worked in the GI clinic/office of a GI) nurse.... with a Bachelor of Science degree. If someone like that doesn't get it, then you have to realize... the vast majority of people on the outside looking in just won't get it.

I posted my internal photos... variety of reasons... First, I'd tried to 'imagine' my scar tissue myself... even wrote about that here (pre photos) as akin to inside out sunburn on my arm... seemed like a pretty reasonable theory... No where close to the evil reality of it. So, I thought that.... other folks... wondering what caused the god awful pain of it.. they could see what was going on inside (if they hadn't seen their own) if they wanted to. But another reason was... a lot of people with this disease had written about folks around them not understanding, not believing, not accepting... "it's all in your head, etc." mentality... And I thought to myself... "Here's a little Show N Tell for those folks, a little food for thought... See if they can digest my photos... Ask them if they'd like to digest with my interior. No! I thought not!" They say a picture is worth a thousand words.

Anyway, rambled on way too long. I really do commiserate. Been there, done that, got the tee shirt. There are all kinds of reasons why people don't get it. Some refuse to see it because if they stay in denial, then the one they love doesn't really have it, you know? Other's deny it, not because they think it isn't real, but the reality of it scares them too much to deal with. Some 'think' they get it... but unless they've got it, they really don't get it. And then there are folks who simply don't want to, so you shove it in their face.

Alright, the last is a bit drastic... but if you run into one of those.. "It just can't be THAT bad"... then, by all means... show them my insides, or if you have photos... you own. That will shut them up.

 

[valleysangel92]

First off, welcome to the forum!

Secondly, I know what you mean, not so much my family, but a lot of my 'friends' think that they know what is supposedly best for me, even though they usually have no clue, and then they get all offended when I dont try their 'solutions' or when I tell them something won't work.

I dont really have any advice, just wanted to show you my support, if you ever need a chat you are more than welcome to inbox me at any time and I will do my best to help you .

 

[Absentminded]

Yup, I totally get this!

I have an Aunt (by marriage) who is always on at me about how my Crohn's will get better if I just cut out certain food. She does have a medical background, she is Russian and is their equivalent of a GP. However, I have a gastro, specialist gastro dietitian and a brilliant colorectal surgeon and I trust their opinions.

Thankfully I don't see her very often, but she seems pick big occasions to challenge me on my diet, like my wedding day when she told me off for eating sweets (that I had bought for everyone!!) or at my engagement party when she told me off for eating one white bread roll.

I know that I probably shouldn't eat sweets, but it was my wedding day and it was a treat. I had very recently been diagnosed at my engagement party, was on 40mg of pred and had been told to eat low residue by my IBD nurse, Crohn's at that point was very new to me, so I trusted my IBD nurse to give me the correct advice because I had nothing else to go on!

I really really dislike her, she's said nasty things to other family members, including my mum and if she says one more thing I don't think I'll be able to control myself!!!

 

[Absentminded]

^^ Wow that was one heck of a rant! Sorry!!

 

[Nancye50]

I'm new. So my family is new too. My mom said, "This Crohn's. It's in your Dewey Denim, right?"

 

[Mama Moo of 2]

Jake, I would give her the benefit of the doubt, even though that's not easy.

She seems worried and stressed about you, and a baby in the mix never helps matters. Her comments could be her way of trying to control a situation she has no control over. But it is very frustrating for you because you need a supportive partner, not a critical one.

I have a super-critical mother, so much so that I try to hide everything from her. In her world, every health problem is because of something you've done wrong. So if I make the mistake of sharing with her, I'm told that I've screwed something up.

Hope you find someone to talk to who will just listen and commiserate.

 

[Nancye50]

@Mama Moo of 2 My mom too! She keeps telling me to "not stress" and "warning" me about taking care of myself. But she's 8 hours away. I have a family to take care of too. Her pressuring me about relaxing just pisses me off.

And my husband is convinced that I'm making myself sick by not modifying my diet more. My dr said "low fiber, dairy limited". No foods seem to trigger problems right now so I know I'm fine but I hate thinking he is looking at me thinking I'm not doing everything I can to get better.

 

[Too Many Bum Steers]

Hi all,

I'm pretty new to this forum and this is my first post

I just wanted to vent some frustration really, I've got a family that try and second guess my disease and what the doctor's are telling me.

This incident refers to a case of tonsillitis. Bit of Background on me, I've got left-sided UC and current meds are : Pred 30Mg, azathioprine, Asacol, Asacol supps and enemas and other things for side effects of the pred. So i've just been to see my GP and been told I've got tonsillitis, now I'm usually a bit sceptical about these things but it's been really quite bad. So, I get home and tell my partner that I've got some anti-biotics to take to treat the infection and she tells me she doesn't think I should take them and it'll clear up with paracetamol and cough syrup, baring in mind I'm reasonably immunosuppressed at this point.

Part of me wants to show her what'll happen if I let the infection take hold, a trip to hospital can't be that bad, surely? She says it's because she doesn't want them to upset my UC, I just can't win.

This and the fact she thinks my meds are wrong because apparently it's far too long for me to have been flaring for six months. Anyone else think this is too long?

I just feel like people are trying to second-guess my disease. That and the fact that I work full time, and have a six months old son. When I get in from work, I get handed that baby because 'she's had him all day, therefore it must be my turn' and the second i complain of being fatigued or in pain I just get told to 'get on with it'.

I just feel like jacking it all in but won't because of my son.

Any advice and support would be very much appreciated. Thanks in Advance.

Well there's one thing for sure: dead germs will grow back. Dead people won't. If she brings up the antibiotic again, you could get rude like that on her... after all it's pretty rude to suggest to someone that they shouldn't take care of their health, however they feel they should.

What's scary to me about this situation is the weirdness of the possible aftereffects. What if you have a bad reaction to the antibiotic? People do. You need her support, not her bitching. She's trying to help, that's ok, but criticism isn't helping. If you have to change antibiotics, she should be right there helping you, not casting more fear and uncertainty on the method of cure.

Well even if you don't have to change...

Anyway, deep breaths, and long stares into the beautiful face of new life in your arms.

 

[Too Many Bum Steers]

Yup, I totally get this!

I have an Aunt (by marriage) who is always on at me about how my Crohn's will get better if I just cut out certain food. She does have a medical background, she is Russian and is their equivalent of a GP. However, I have a gastro, specialist gastro dietitian and a brilliant colorectal surgeon and I trust their opinions.

Thankfully I don't see her very often, but she seems pick big occasions to challenge me on my diet, like my wedding day when she told me off for eating sweets (that I had bought for everyone!!) or at my engagement party when she told me off for eating one white bread roll.

I know that I probably shouldn't eat sweets, but it was my wedding day and it was a treat. I had very recently been diagnosed at my engagement party, was on 40mg of pred and had been told to eat low residue by my IBD nurse, Crohn's at that point was very new to me, so I trusted my IBD nurse to give me the correct advice because I had nothing else to go on!

I really really dislike her, she's said nasty things to other family members, including my mum and if she says one more thing I don't think I'll be able to control myself!!!

As someone who comes from a family of Eastern European perfectionists, many of whom have some form of IBD and have superstitious beliefs about food (some of which are annoyingly correct)... I can commiserate with this story.