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02-08-2017, 07:07 PM   #1
Sophabulous
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Hey all!

I'm struggling with something. Since I've been diagnosed my Dad & my partner of 10 years have largely left me to get on with it. That is how I like it and I don't want to be dragging Crohn's up all the time. I go to the appointments, I take the meds. If they work then great, if not then that sucks and we'll move on to the next thing. I have severe inflammation and by some miracle I've been able to work throughout, despite times where I haven't eaten for days and feel like I'm going to pass out.

However my mother is driving me crazy!! She never really grasped how poorly I was leading up to being diagnosed which is largely my fault as I tried to hide it. However since I've had a diagnosis she's driving me crazy. I think it's misplaced guilt but I really can't cope with it for much longer.

First of all she was convinced that she also had Crohn's despite being in her 50's and never feeling bad enough to go and get it checked. When I pointed this out to her she said she would never be able to cope with a colonoscopy. I pointed out that I used to feel the same until I got so ill that nothing like that mattered anymore.

Then she became obsessed with what I was eating and it what quantities. In the end I had to ask her to back off as I was doing my best and she was putting a lot of extra stress on me with this. Not even 2 days later she demanded to know what i had eaten and before I had even started telling her she was telling me off for 'not eating enough.' I got so annoyed that I took the toast I was buttering, (my only food of the day so far) and threw it in the bin.

There's been much much more which has chipped away at me over the last few months, but then tonight she casually told me I shouldn't be eating celery, sweet corn and a couple of other things which I can't remember now as I was so incensed at the time. I snapped at her, and now I feel guilty.

I told her I was the one with the disease and just because her hairdressers husband with Crohn's has issues with those foods doesn't mean that I do. I've done exclusion diets and food diaries etc. The only thing that seems to upset me is coffee.

Granted I don't tell her these things but only because I know it leads to unsolicited and misinformed advice. I know she means well of course I do, but she's completely tactless sometimes. I feel like she's constantly asking me why I don't want children (short answer is I would never cope and I don't like them anyway) and I've heard her telling a friend going through IVF treatment that she just needs to relax and she'll get pregnant. I was absolutely cringing.

I feel like trying to talk to her about this will just open a can of worms and she will get defensive and upset. I know she's trying to help and I haven't exactly made it easier by putting a brave face on things. My Dad is now asking me questions which I know is because she's told him too as he has never asked me about appointments etc before.

They seem to think a voicemail from the secretary at the GP changing my appointment time is massive cause for concern, not realising I'm in the doctors almost weekly for various blood tests etc.

I think I've tried to downplay a lot of this because I have a brother with fairly serious mental health problems who has pretty much taken up all their time and maxed out their stress levels for the last 10 years. I didn't want to contribute to that with my own problems too, but now it seems like my trying to shield them a bit is backfiring.

Any advice for me? I'm sorry everyone, I don't know what I did without this forum!! I'm at my wits end! Trying to hide how debilitating this can be has not been easy and I'm reluctant to now admit I've been struggling for fear that I won't be left alone!

Thanks in advance!
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Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
02-08-2017, 07:44 PM   #2
woops!
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Families can be the best, and sometimes the worst. Has she done any research on her own, like reading about the Disease? What if you tried to talk to her with your dad and hubby present as a buffer? Seems like a good talk with her might help, but always easier said than done. I had to have a similar talk with my mum, although she was not doing all that yours is. Mine was convinced that if I ate one piece of chocolate or other common trigger food that I would be rushed off to the hospital. This caused every cramp or gas pain I had to be followed by a stearn loud "what did you eat?" I finally stared to answer things like "beer, pizza, chocolate & 5 shots." Finally got the message lol. Wish I had more suggestions. Someone else might have something better.
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02-08-2017, 10:24 PM   #3
ronroush7
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I agree
02-09-2017, 12:10 AM   #4
cmack
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I think you need a break. It is very hard to go through your parents misguided actions. They mean well. Maybe just come on here more and have a vent. We are all very supportive. Might help a little. I'll listen.

cmack
02-09-2017, 04:39 AM   #5
Sophabulous
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Thanks all, you're right a break is just what the doctor ordered. I'm going on holiday in May so I'll grit my teeth and look forward to that.

I think I'm going to have to bring it up eventually, I might give her Professor Hunter's IBD book which helped me understand things much better when I was first diagnosed. Whether she'll read it or not is another story!

I've tried bringing her to appointments with me but that just seems to make her worse. It would be easier if anything I said or did helped to get her to back off!

Hey ho, we'll see what happens

Thanks again all
02-09-2017, 10:37 AM   #6
Cat-a-Tonic
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Oh, Soph, I feel for you so much. My mother is very similar. When I first got sick, I told her that my doctor was running some tests and that he thought it might be something like Crohn's or Celiac. Well, then my mother talked with some weird cousin or something, and her cousin has Celiac. So the cousin apparently convinced my mother that I must have Celiac as well, and that since I have it, my mother must also have it and must have given it to me. Nevermind the fact that gluten doesn't bother me in the least and that my mother wasn't having any symptoms - she self-diagnosed herself with Celiac and went gluten-free. She harped on me for ages to do the same. Like I said, gluten isn't a trigger food for me, and I've had multiple tests, all of them negative. I've asked multiple doctors and nurses, and they all agree that I 100% do not have Celiac. That has not deterred my mother. She's still gluten-free and tells anyone within earshot that she's got Celiac. She's one of those people that waiters cringe about when she steps into a restaurant. Instead of being supportive, she's made it her mission to get attention for herself.

My brother is also bad, in fact I recently had to un-friend him on facebook. He's done a lot of drugs and I think he has some sort of mental illness. He listens to a lot of self-help tapes but he misinterprets the reality of what self-help can do. He likes to tell me that if I just use positive thinking and use "autonomy and mastery" (whatever that means), that I can tell my cells to heal and then I won't be sick anymore. Um, no, my illness doesn't work that way, and that's total victim-blaming too. Telling me I'm sick only because I don't want it badly enough to be well? That's just wrong and so rude. If I could tell my cells what to do, you'd better believe that I'd be the healthiest person on the planet by now! But it doesn't work that way.

My dad is the only one who is actually supportive. He's clueless, when I talk about medicines or tests I can see that he's just totally confused. But he's the one who really cares (which is so odd because he was a downright ogre when I was growing up). When people ask me how I'm doing, I automatically just say I'm fine, regardless of how I'm really feeling. My dad is one of the few people who sees through that - when he asks how I'm doing and I say fine, he often says, no really, how are you doing? And I had put something on facebook awhile back, about how I feel sort of worthless in a flare because I can't do much of anything. And my dad saw that and he told me that I'm never worthless. I almost cried hearing him say that.

I don't have any advice for you, but I just wanted to share my experiences and tell you that I know a lot of how you're feeling because I'm in a similar situation with my family. I hope you do have some supportive people in your life.
02-09-2017, 10:55 AM   #7
cmack
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Same thing here family doesn't get it. Apparently they don't want to. I should know how hard it is to be going deaf. According to my Dad I should read up on how frustrating people like him have it with deafness. I told him to get the doctor to look in his ears because it is probably wax. He wont listen. He has had 11 years to learn to understand IBD and has not bothered too much to try. I told him I'll look into his frustrations if he looks into understanding mine. He just gets pissed off. No get! Just stubborn and cranky. Mom's no better she pokes jabs at me for fun most days. I swear she knows just where my pissed off button is and loves to press it often. All I do is try to be kind and help with things like yard work, cleaning the chimney, painting, repairing and maintaining the vehicles, the lawnmowers, the kitchen sink, the furnace, the dryer etc etc.(I was a maintenance man at a huge resort once upon a time as well as a ranch hand and an apprentice in sheet metal and auto body repair) Oh well eventually maybe I'll be able to find another place to live. Don't get me wrong, I love my parents. It's just hard to be living with them at age 38 after being on my own for so many years.

Last edited by cmack; 02-09-2017 at 02:28 PM.
02-09-2017, 02:33 PM   #8
cmack
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It was always so nice to come visit and then go home afterwards. Now it feels as though I've worn out my welcome and have no income to provide myself a new home. Not easy but I manage the best I can. You folks on here are such a huge help to me. I couldn't cope without such a supportive bunch like I have found here with you all. I appreciate each and every last one of you!

cmack
02-09-2017, 03:00 PM   #9
Lisa
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Sigh...parents can be soooooo annoying, even when they mean well....

A couple of years ago I was at a function with my Mom, and when I joined the table for dinner she introduced me to someone then proceeded to say in an aside 'she is quite ill' or something like that....now mind you, I'd been in remission (thanks to Remicade) for about 8 years by then!!!!!

Grrrr.....I really DO love my Mom but she can get on my nerves at times!!!

Have you thought about maybe writing your mom a letter? That may be a better way to reach her and avoid a conflict.....it is also a way to lay out what you are feeling, what does and doesn't bother you, what her support and/or lack thereof means and does to you......
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
02-09-2017, 03:09 PM   #10
cmack
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I tried a letter a couple times before. Nadda! Oh well I tried. Nobody can say I didn't try.

I like the idea though Lisa. Some others may be more responsive to a well written letter expressing their feelings. I would say if you haven't tried it you probably should at least give it a go.

cmack
02-09-2017, 03:22 PM   #11
happy
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Sophabulous,
So sorry to hear that you are unwell and not getting the support you would like to have from your mother.

What has worked for me in this type of situation is to focus on myself and how I behave while understanding that I cannot change the other person.

First I try to think about the interactions and what bothers me so much about them. So, if I was feeling criticized about how I was managing my disease, I would decide that I needed to gently tell the other person that I know that they may mean well when they suggest that I eat or not eat something. Then I would again gently say that they may be unaware of all of the treatments and diets, etc. that I have already tried and that I am working with my medical team to become as healthy as possible. Then I would say that I know that they want to help support me, but that the best way to help is to support me in my decisions about how I am managing my disease. I would say that if they still want to share info that they think they have 'discovered' may help me, they can send me an email about the info and I will consider it. They are not to ask me about the info--if it is something that is new to me and I believe it is helpful, I will let them know.

This way your mother's need to 'help' is satisfied, while your boundaries are respected. That being said, it is then up to you to remind her when she is doing that 'thing' again and firmly not engage her and change the subject. She may get a bit miffed the first few times and say that she is only trying to help and you just continue to say that the help you need is for her to support what you are already doing. Remember that you are still her baby and she just wants you to be well and wishes that she could 'fix' it.

Once you get the unhelpful 'help' under control, you can then move on to dealing with her concern about you not having children. The process is the same--setting your boundaries and asking the other person to respect them and then not responding to the other person's attempts to cross the boundary. I call it 'not taking the bait' in the attempt to engage in interactions that I have chosen not become involved in any more. Of course it is best to start the discussion of how you would like your mother to behave when all is calm, not in the middle of an argument.

Good luck. May you soon be feeling better.
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02-09-2017, 03:26 PM   #12
cmack
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Happy,

I particularly like the 'not taking the bait' part. Good advice.
02-09-2017, 03:38 PM   #13
happy
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Ha. Thanks.
02-09-2017, 06:27 PM   #14
Sophabulous
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All good stuff guys, glad to know I'm not the only one! Cat it sounds as though my brother and yours are cut from the same cloth lol! I could write a flipping book on that subject....fancy a collaboration? Lol

Definitely not taking the bait on the children issue. We've had that discussion many times and my answers and reasoning never change. I don't know if she thinks I'll do it out of guilt or something? She knows very well how I feel about it. Maybe in a few years I'll feel differently, maybe not. I'm going to take the advice of not taking the bait on that one, I only repeat myself anyway so in future I'll be changing the subject.

I wouldn't mind so much but she has come to appointments with me for the exact reason of helping her to understand and see what's involved, what works and what doesn't. Then she's forgotten within a month or so. The other day she told me I need to be on azathioprine because someone we know takes it. I've been on it since September, she was there when it was prescribed!! She actually wasn't very happy about the increased cancer risk and had lots of questions about that. When I pointed this out to her she said 'oh no, you take something different he has to have his blood monitored very regularly.' Errr yes so do I. You. Were. There. When. This. Was. Spelled. Out.

Sorry for the rant, it just got to me because I felt guilty for snapping. I'm having a crap time at work and just didn't have the patience for it after weeks of long hours and having no progress to show for it. Believe it or not I'm usually very slow to anger and more patient than most!

Anyhoo, she's still using my poor Dad as a go between. He's now telling me I should change hospitals. Funnily enough to the one she's been telling me to transfer to for a while where you've guessed it - our acquaintance with Crohn's disease goes to.

Give me strength. And wine
02-09-2017, 06:58 PM   #15
cmack
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Sophabulous,

I might have to call you Soph! lol can't seem to spell that one very well. I'm sure you are very Fabulous. My brother is a dick too! Let's start a club. LOL! Your mother sounds a lot like mine, she has trouble remembering things. Very sad to see it happen but maybe it's true that "Ignorance is Bliss." sometimes it just seems awful convenient though. Oh well on to better things.

It is totally up to you about issues relating to your body like having babies or not! Just ignore it. I would. I hope you know now that I am here for you as a friend and you can talk to me anytime about this type of family issue. Pm me if you want to thats cool too.

This disease is rough, often times people that try to help screw it up so bad it's a frickin slap in the face(they don't usually mean to do it). They just don't get it, but I do and so do a lot of other people on this site. Stick with us my friend we all support one another around here.

You can count me in as a friend,

All the very best,

cmack.
02-09-2017, 07:00 PM   #16
cmack
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Have a couple glasses of Merlot for me too. I'm out. LOL

cmack
02-10-2017, 05:41 PM   #17
Sophabulous
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It's Friday, I was at work til 8pm and I'm having some Sauvignon Blanc! No other way around the events of this week at all :-|
02-10-2017, 07:14 PM   #18
cmack
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Hey Soph,

How are you doing? Sauvignon Blanc works for me. I hope you are getting some rest and maybe feeling a little better. Give me a shout if you want to vent or just BS, pm me if you like too. I'm cool with that. Hope you had a good day, if you didn't tell me about it. I love to talk. Can you tell? LOL!
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