Misunderstood by Family

[Karlic]

Hey everyone,

I just wanted to talk about an ongoing issue that's been deeply upsetting me recently, and when brought up touches a nerve.

I have Crohn's, and my doctor is currently trying to find the best medication for me. I've gone from laying in hospital and ambulance calls right to being able to do anything physically demanding. I have all sorts of symptoms, ulcers on the back of my hands, your average moderate to severe Crohn's issues (blood in stools, pains in the stomach area etc.) and sometimes my feet and hands swell up like big foot :l

But here's the part that bothers me sometimes even more than the illness, being called a liar.

My family don't quite understand how hard it is to predict how the day will pan out, or week. I can be fine one hour and the next need to lie down. Last year lots of time was taken off school and ended in me dropping out with depression. I've spent the past month trying to get back into education, and after they tapered down on my prednisolone, I then relied on Mezavant which proved non-effective.

Honestly speaking, I put on a smile for everyone. I try not to moan when it's bad, or when mentally-speaking I'm not all there and when I do, I feel guilty for bringing others into it. But my family don't seem to get when I'm bad, and how it affects me. The doctor has tried to explain, but they're semi-there. Before I went into hospital about half a year ago, I remember my older brother telling me that he thought I made it all up, that I was lying, and shortly afterwards everyone thought the same thing. Then, the next visit with my gastroenterologist and my doctor rushes me into a ward to recover. I was in such a state, I couldn't open bottles, my arms were disgustingly thin and I couldn't look in the mirror. They all hushed up and felt bad for how they felt.

Now, it's the same again, and the worst symptom is diarrhoea. I've gone into school with it several times, and literally had to rush out of class to make it. I couldn't go to school, because if it was just getting worse I'd do something even more embarrassing (and I've came far too close). It feels as though most of the time I'm just getting in the way.

TL;DR- my parent's don't really understand my condition and accuse me constantly of lying, and there is a lack of support.

What do I do?

 

[Kiwi-Fiona]

Hi Karlic,

I full understand where you are comming from in saying how bad you feel, have you ever though of joining your local libary and getting some books about Crohns out, leave them lying around the house & see if they pick them up & start reading them.
You should never feel guilty about being sick, its not your fault its just the hand we have been dealt.

Good luck Honey & let us know how things are going

Fiona

 

[Trysha]

Hello Karlic,
It is so sad to see you suffering like this with little support from your family.
We too were brought up the British way--- very spartan and no time for anyone to say they are ill.
It happened to me a few times starting at eight years old.No such thing as Crohn's then, it was not a recognised illness.
We ended suffering in silence unless being sick and passing out, both of which drew great attention. Any symptoms of diarrhea were treated with a weekly dose of exlax....
You have my greatest sympathy and I don't know what else to say.
If you have a student office maybe you could find a supportive person to speak with you and share your concerns with..
Eventually your family may recognise your suffering as something you have tried very hard to recover from to some degreeThe previus post contains some helpful suggestions.
Your best ally is your family doctor from what you have said. Maybe he could talk to your parents again.
Feel better soon
Hugs and best wishes
Trysha

 

[Dunbar]

Check out this thread http://www.butyoudontlooksick.com/ar...-spoon-theory/
Print it out and leave it somewhere where everyone but mostly you can read it everyday, you will emotionally feel better which will translate into feeling better all over.
You can come here to get the daily boost you need, cause we get it, we know and you are not alone.

 

[Ihurt]

Gosh, I am so sorry you are struggling right now. I know that having a chronic illness is no easy feat. Getting people to understand is just is hard it seems. I have not been dx yet, still going through tests, but I do have a lot of other health issues that are debilitating. I will say since getting sick back in 2003, I have had my share of being disgusted with certain family members as well. Unfortunately a lot of healthy people do not understand or maybe do not want to understand chronic illness. Maybe this is your families way of being in denial. They maybe do not want to accept the fact that you are sick, I dont know.

I would say have them got to the doctor with you so the doctor can explain to them just how sick you are and how hard this is for you, but it seems like you have already done all that. IS there are way you could search online and maybe see if there is a support group near where you live?? This way you could hook up with people who really understand and know what you are dealing with. When I got diagnosed with IC ( interstitial cystitis) a bad bladder disease, I did not know anyone with this disease. I did a search and found a support group that would meet once a month to talk about the disease and just to meet with other people who have it.

Again, I am so sorry you are dealing with this. Just know that you are not alone.... Hope you feel better soon.

 

[Karlic]

Hi all, thanks for taking the time to reply back, your comments have helped an awful lot.

I remember seeing the spoon theory before, and showed one of my friends it the other day however she wasn't really interested. I'll try and show it to my family tomorrow.

Eight years old? That's sad to hear. Mine started around the age of 15, and was called out by everyone for being untruthful. It was only when my GP stepped in and my bloods were getting dangerous that he referred me to a gastroenterologist and was finally diagnosed with Crohn's.

It just angers me that even now, people are quick to make assumptions. It makes me feel uncomfortable, and I've been horribly depressed from it. Often I'll lock myself away in my room and not want to talk to anyone for days, or avoid my friends. I'd have surges of anger whenever it was mentioned and turn extremely defensive.

It's very nice of you all to share your stories, and sad to hear you're all struggling with similar issues. I'll definitely look at a local support group and try to find a conclusion to this. I don't want to go on depression meds again.