Anyone else with UNSUPPORTIVE FAMILY?

:frown:

It's horrible that after several years with Crohn's Disease and still being impacted by the disease, my family does not offer me any support and are everything but compassionate. Anyone else have a family like this??? I feel like I'm the only one with this problem, as everyone else seems to have a great support system.
When I talk about the disease, they do not understand it, they think i'm lying, or they simply want to believe what they want. My relationships have been affected so greatly by this disease. I feel shunned and rejected Totally alone

Can anyone else relate here? How do you handle this because this rejection is making me depressed and stressed out all the time now. I feel that if I really needed someone, I have no one to turn to in my family.

Please write if you feel similar... Thank you and I appreciate you for reading this
tiara:

Hi there. I am so sorry you are going thru this with your family. If you read thru the Vent Away forum, you will find tons of stories from people asking the same thing - how to deal with unsupportive and uncaring friends and family.

I am lucky that I have a strong support system. But I will share the best piece of advice I ever got: You can't change other people, you can only change the way that you deal with them.

If you don't like the way they respond to your disease, stop talking to them about it. They will never understand and don't seem to want to. Seek out new friends and relationships. Does the CCFA have a chapter near you? Reach out there or ask your doctor to recommend a support group for people with IBD or other chronic illnesses.

You will get lots of support and understanding from all of us here on the forum. But unfortunately, we can't go out with you on a Friday night!

Hang in there - Amy

Thank you Amy for responding. I have stopped talking to them about it. Being that they are my family, it has also made me stop talking to them in general because I'm very hurt.

Family is supposed to be there when we have no one else. It's the opposite. They think that I am feeling sorry for myself, that's why I'm at home alot and not working. It boggles my mind. They all talk amongst themselves about me and come up with why I am the way I am. What the adults say is believed by the younger ones and there you have it. A bunch of people that are totally misinformed about me!

I will look into CCFA support here in upstate NY. Maybe there is something. Thank you again!

Hey crushing
yep. I dont have any family. No relatives at all so my support system is small. I think that is why I value here so much and I had to get advocates. They are very helpful taking me or meeting me at doctors appointments, etc.
I have lost some friends (but figure they weren't really good ones to begin with). I have always been about helping others and now that it is my time needing support, well..where are they??
Look in to some advocates or some counsellors who can accompany you to appointments. You cant do it on your own (I am finding).
Hang in there.. and try to use the forum. There are a lot of amazing people here who are all struggling in their own ways... I know for me, it makes me feel not so alone.

As a family member of someone with Crohn's, I can honestly say that we are ignorant and do not fully comprehend what our loved ones with Crohn's are going through...at least in the beginning. My spouse is a stoic, so I did not understand the pain she was enduring... nor did I fully wrap my head around her fear of pooping accidentally in public. I did not understand that steroids affected her sleep, nor that they affected her mood. I think I really started grasping what she was going through when we went TOGETHER to a Crohn's support group. So...grab the family member that you have the best connection with and drag them to a support group meeting. If there isn't one if your neck of the woods, have them cruise this forum. They should come away with a better sense of your situation and show you more compassion.

Dr. S (spouse of a Crohn's sufferer)

Hi Cushing! I can relate on some level. Crohn's Disease runs in my family, so it's not unheard of and many members within my family are quite familiar with the nature of the disease. My brother and I both have CD. I have a sister that is on her way to being diagnosed with CD. My father recently recovered from an abscess close to his naval, and he's silently suffers with gastro-intestinal symptoms.

One would think that given our family history of CD, and how it has affected various members of our family that we would have the best, most understanding support system. Not so! My mother is supportive in some ways, but she has her limits. I have a sister that seems to think I'm a hypochondriac. My father spent years watching his own father battle with the disease. Grandpa was a strong, determined fisherman who never let anything get him down. My dad is avoiding the gastroenterologist, and has strong opinions on how to handle the disease. I have been brought to tears many times because of the pain. I remember hearing my father say, "You can't just cry! What good will that do? You've got to fight through it!" I will give my mother some credit for sticking up for me and telling my father to get a heart. She was quick to add that the disease came from his side of the family.

I'm sorry to unload, but this topic makes me hot under the collar. Why are people so insensitive? Family members can be the worst offenders. I am so thankful to have found this group. When I need the support and comfort, it isn't hard to find here.

I am from a very large family. I am one of 10 children and the 3rd oldest, and yet I can not talk to any of them about this, because they just don't want to hear about it and don't really care. I have three children and there is only one of them that is in constant concern about my health and is there for me, the other two could care less about how their mom is doing. I do know how hurt you are when you can't even turn to your own family. I was talking with my daughter tonight and was going to tell her what the doctor had done, of which she knew I was going for my results today and didn't even ask me how it went, I just didn't bother to even tell her what had happened.

Most of my support system has come from great friends that I have made here in the support forum. I really don't know what I would do if I didn't have all of you to vent and ask for advice and support. So many very caring people on here and we all support each other.

Amy is right you can't change others, you can only change yourself and the way that you handle them. You are right in not talking with them, because they won't ever understand.

We are all here for you!!

perhaps send our doctors here while we are at it

I sometimes think people choose not to believe it because it is too difficult to see us go through pain...so it is easier not to believe what they say... denial on their part. I'm not sure...
I mean, I read the thread about relationships and how many people were dumped because of it. Im not suggesting that those who remain and support have a difficult time watching the pain but maybe they can process it a little better..

..hmm..

silveyk said:

As a family member of someone with Crohn's, I can honestly say that we are ignorant and do not fully comprehend what our loved ones with Crohn's are going through...at least in the beginning. My spouse is a stoic, so I did not understand the pain she was enduring... nor did I fully wrap my head around her fear of pooping accidentally in public. I did not understand that steroids affected her sleep, nor that they affected her mood. I think I really started grasping what she was going through when we went TOGETHER to a Crohn's support group. So...grab the family member that you have the best connection with and drag them to a support group meeting. If there isn't one if your neck of the woods, have them cruise this forum. They should come away with a better sense of your situation and show you more compassion.

Dr. S (spouse of a Crohn's sufferer)

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Hi

It's very hard to convey tone in a written message, so please understand I am not being in any way confrontational or nasty when I ask my question.

How as a Dr did you not know that steroids would affect her mood? I've just reached the end of med school and one thing we've had drummed into us is the effects of steroids.....

I can however understand how a Dr may not fully understand crohn's from a patients perspective. My boyfriend is older than me and has been qualified for 3 years and I don't think he had a clue about what patients go through with their illnesses until he met me (I have a dodgy heart as well as crohn's so I've been in and out of hospital a fair bit during our relationship).

I'm glad that you've learnt how to best support your wife. I'm constantly surrounded by medics (all my close friends are drs and med students) and most medics however seem to be genuinely caring and nice people (there are of course exceptions). I hope that the original poster can help her family to understand how much she suffers and how normal it is for patients with crohn's to feel horrendously ill and often very alone!


xx

I understand. I have 2 cousins who have crohns. In my family they like to party, drink and eat whatever. Now I know that everyone is different and they have their bad days like we do. But to my mom.... she just can't understand why I choose to do things differetly. I live the US and they live in Ireland. I try to stick to a pretty strict diet. I take my meds religously, and for the most part do ok (well this year has been ok anyway) My Mom is not here, she lives in Ireland, so she dosen't see the dark side when it happens. I get tired of trying to explain why I don't want to drink a glass of wine/beer, and then have her say.. well your cousins do it and they are ok! I have just given up. She dosen't seem to understand that even when I am feeling good, that I still have to think food choices through. I still cary extra undies with me, coz you never know when you might need them. And NO I will not skip a dose of my meds just so I can have a glass of wine. It gets frustrating, and our relationship has suffered from this. After 15+ years I have learned that if she chooses not to learn about it.... thats not my fault. It is what it is. Sorry you are having a hard time, there are many of us out there who seem to have the same issues. One thing to count on is you will always find support here. I have learned to lean on the ppl in this forum alot. No one else will understand what we go though. Hang in there, and reach out to ppl here.
Woops!

While my family is supportive many of my friends just don't get it. They think it's just a tummy ache and think "why is it so bad, you look fine." It is hard. You have to find the support you need outside your family. Whether it be the forums or a close friend you can talk to. I stop sharing info with the people who are unsupportive. That way I don't et frustrated when they don't get it or seem to not care.

I hope things get ether for you.

My family has gotten better since I originally posted. It took me getting extremely ill for my dad to open his head a bit and try to understand. I know that there are many that still don't "get it" and i'm done with trying to explain and help them understand the disease. They should have some basic understanding of what Crohn's Disease is by now, especially taking into consideration that it's been an ongoing health issue for me.
I agree, these forums are a blessing and really have helped me during some of my lowest moments. Thanks for sharing your story with me. :sun:

AndiGirl said:

Hi Cushing! I can relate on some level. Crohn's Disease runs in my family, so it's not unheard of and many members within my family are quite familiar with the nature of the disease. My brother and I both have CD. I have a sister that is on her way to being diagnosed with CD. My father recently recovered from an abscess close to his naval, and he's silently suffers with gastro-intestinal symptoms.

One would think that given our family history of CD, and how it has affected various members of our family that we would have the best, most understanding support system. Not so! My mother is supportive in some ways, but she has her limits. I have a sister that seems to think I'm a hypochondriac. My father spent years watching his own father battle with the disease. Grandpa was a strong, determined fisherman who never let anything get him down. My dad is avoiding the gastroenterologist, and has strong opinions on how to handle the disease. I have been brought to tears many times because of the pain. I remember hearing my father say, "You can't just cry! What good will that do? You've got to fight through it!" I will give my mother some credit for sticking up for me and telling my father to get a heart. She was quick to add that the disease came from his side of the family.

I'm sorry to unload, but this topic makes me hot under the collar. Why are people so insensitive? Family members can be the worst offenders. I am so thankful to have found this group. When I need the support and comfort, it isn't hard to find here.

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Yup, I have decided that I'm no longer going to discuss my illness with people that want to stay ignorant to the reality of the disease. I think that for some people, no matter how long and how many facts you give to them, they will never grasp the information because they DON'T want to grasp it. It's easier for them to be blind to the condition and believe what they currently do because then they won't feel guilty for what they have not done in regards to support, they wont have to change, they wont be bothered because you can't be bothered by something you're not aware of. The sadness of ignorance. Sad sad.
Thank you for posting your situation :ycool:

teeny5 said:

While my family is supportive many of my friends just don't get it. They think it's just a tummy ache and think "why is it so bad, you look fine." It is hard. You have to find the support you need outside your family. Whether it be the forums or a close friend you can talk to. I stop sharing info with the people who are unsupportive. That way I don't et frustrated when they don't get it or seem to not care.

I hope things get ether for you.

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I have gotten fed up with people and that includes family members. If they say something uncalled for or give me a hard time because they are just freaking selfish, I will drop a bomb on their face. I don't care anymore, I'm not afraid to tell people exactly what they are. For me, it's not healthy to hold things in and let the aggravation fester and make me sick. Not gonna happen. Instead, if someone says something that causes my adrenaline to rise (you know the feeling) it was probably because it was a thoughtless comment, rude joke or maybe they downplayed my illness .. whatever it is, I will call that person out, right there. & they will be the one looking like the insensitive fool, not me. :sheep:

woops! said:

I understand. I have 2 cousins who have crohns. In my family they like to party, drink and eat whatever. Now I know that everyone is different and they have their bad days like we do. But to my mom.... she just can't understand why I choose to do things differetly. I live the US and they live in Ireland. I try to stick to a pretty strict diet. I take my meds religously, and for the most part do ok (well this year has been ok anyway) My Mom is not here, she lives in Ireland, so she dosen't see the dark side when it happens. I get tired of trying to explain why I don't want to drink a glass of wine/beer, and then have her say.. well your cousins do it and they are ok! I have just given up. She dosen't seem to understand that even when I am feeling good, that I still have to think food choices through. I still cary extra undies with me, coz you never know when you might need them. And NO I will not skip a dose of my meds just so I can have a glass of wine. It gets frustrating, and our relationship has suffered from this. After 15+ years I have learned that if she chooses not to learn about it.... thats not my fault. It is what it is. Sorry you are having a hard time, there are many of us out there who seem to have the same issues. One thing to count on is you will always find support here. I have learned to lean on the ppl in this forum alot. No one else will understand what we go though. Hang in there, and reach out to ppl here.
Woops!

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good point and I think there's a lot of truth in your comment. People like being blind.. Then they don't have to be accountable for their actions.

Keona said:

perhaps send our doctors here while we are at it

I sometimes think people choose not to believe it because it is too difficult to see us go through pain...so it is easier not to believe what they say... denial on their part. I'm not sure...
I mean, I read the thread about relationships and how many people were dumped because of it. Im not suggesting that those who remain and support have a difficult time watching the pain but maybe they can process it a little better..

..hmm..

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Thank you for your encouragement. :smile: These forums have been such a life saver to me. I am thankful for each and every one of you.

margie said:

I am from a very large family. I am one of 10 children and the 3rd oldest, and yet I can not talk to any of them about this, because they just don't want to hear about it and don't really care. I have three children and there is only one of them that is in constant concern about my health and is there for me, the other two could care less about how their mom is doing. I do know how hurt you are when you can't even turn to your own family. I was talking with my daughter tonight and was going to tell her what the doctor had done, of which she knew I was going for my results today and didn't even ask me how it went, I just didn't bother to even tell her what had happened.

Most of my support system has come from great friends that I have made here in the support forum. I really don't know what I would do if I didn't have all of you to vent and ask for advice and support. So many very caring people on here and we all support each other.

Amy is right you can't change others, you can only change yourself and the way that you handle them. You are right in not talking with them, because they won't ever understand.

We are all here for you!!

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I'm really sorry to read people's stories in this thread...it makes me sad and angry to know that there is such a lack of support and understanding from family and friends.

It's a similar situation with me and i've become increasingly frustrated in the last few weeks with how people have been reacting since I became ill. Most people choose to ignore it and even when I try and bring it up with them, their reaction is usually "oh well...these things happen...anyway..." as if it's something like a cold that will eventually pass. If only they knew.

I've suffered from mental illness most of my life so I'm used to people turning their back on me but it still doesn't seem to ease the hurt each time it happens.

Keeping a diary has always been beneficial to me..it's the one place where you won't be judged and you can say whatever you feel without being inhibited or ashamed of what you're feeling and thinking. And now I've found this forum too which is such a blessing.

Be strong everyone and try not to let other people get you down. Living with crohn's is tough enough as it is.

I'm really into my quotes so here's a few ones to remind yourself of when you feel like no-one else understands or seems to care what you're going through:

"Nobody can make you feel inferior without your consent" Eleanor Roosevelt

"Don't let other people's opinion of you become your own reality" Les Brown

"Pay no attention to what critics around you say. Since when has a statue ever been erected in honor of a critic" Jean Sibelius

Argh! I 100% understand. My family is unsupportive - not because they don't care about me, but because they just don't get it. But can we really blame our families for not understanding Crohn's disease and how it affects our lives? Our own doctors can't explain the disease to us!

The deepest pain I've felt has been the lack of support from my mom. She brushes off my disease and refuses to accept that I am even sick. She refers to my disease as my "stomach problem" and has repeatedly asked me to stop treatments, avoid surgery, and has otherwise interferred with my care. If I could give you a magic pill that would turn your family into a compassionate, understanding group of people, I would.. but they're human. I hope that their lack of support is a lack of understanding and not a lack of caring - one you can fix, the other not so much.

I just deal with it my not talking to my family about my illness.. I seek out other people with the disease to talk to because I know that no one can understand unless they've walked the walk. Families are human, too, unfortunately.

Jonny, I'm really sorry about the lack of support you've been experiencing.. I know how it feels to be ignored or have people downplay your illness - physical or otherwise.. my brother suffered from mental illness for years and also had no real support from our family. I know it deeply affected him. But you have an entire community right here who want to step in and support you I've also started writing a diary to help me cope with my stress. It has been a huge help just to get it out there in the universe and not have anyone talk crap back to me.

Ouch, Lulu.. don't be so harsh on the dr. Knowing something intellectually is way different than experiencing it first-hand

Hi crushing, I'm really sorry to hear about your family. I've got family members that don't understand my bf's Crohn's either, so I agree it's definitely frustrating when they don't get it, and you can't choose your family. (And I would love a pill like that, Lorie). On a side note I'm not sure if I have the opposite problem, I always feel so helpless because I feel like there is no way I can ever fully understand the things he must go through).

Unfortunately if family is not the strongest support system, how about friends or local support groups? As well, I've found this community is awesome no matter who are you relation to Crohn's; I've found a lot of people here who are in the same shoes I am, and it gives me comfort to know I am not the only one who feels this way or has certain questions.

All the best.

You aren't alone, so many of us have the same issue. My family downplays it, delays trips to the hospital for WEEKS, and believes what they want to think, not what it is. Today I was told that I just have a cold, and I'm being treated as if they know more about what's going on inside me than I do. I hope you can find support on this forum, you have mine.

Loriebird said:

Argh! I 100% understand. My family is unsupportive - not because they don't care about me, but because they just don't get it. But can we really blame our families for not understanding Crohn's disease and how it affects our lives? Our own doctors can't explain the disease to us!

The deepest pain I've felt has been the lack of support from my mom. She brushes off my disease and refuses to accept that I am even sick. She refers to my disease as my "stomach problem" and has repeatedly asked me to stop treatments, avoid surgery, and has otherwise interferred with my care. If I could give you a magic pill that would turn your family into a compassionate, understanding group of people, I would.. but they're human. I hope that their lack of support is a lack of understanding and not a lack of caring - one you can fix, the other not so much.

I just deal with it my not talking to my family about my illness.. I seek out other people with the disease to talk to because I know that no one can understand unless they've walked the walk. Families are human, too, unfortunately.

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You hit the nail right on the head for me. If it needs to be done, and recommended by medial "professionals" then it shouldn't be avoided... Usually. Note the slight uncertainty on 'Professional.'

my blood family is not part of my support network. Whenever I have tried to talk to my parents about my ills they just yell at me and give me all kinds of reasons why it's my fault that I'm sick, and that it doesn't need a doctor just good old fashioned will power.
yeah... I don't tell them what's going on either. They came to visit for a week, and it was a very hard week. I hid my handicap placard to avoid that whole 'discussion'. They have no idea, and I've given up trying to give them one.

In general, my support network is very very small. I've been sick for so long that I don't have many close friends. I have friends, don't get me wrong, but I'm not sure I would have them if it wasn't for Kelly being social with them. They're definitely not my support network which pretty much consists of Kelly and my cats and dog. I have three close friends and a former co-worker who I would call in an emergency if I had to, so I'd call them my provisional network. They don't understand, but they will very likely drive me to the doctors/hospital/get my meds which I very much appreciate.

"When I talk about the disease,...

- they think i'm lying,...
- ...I feel shunned and rejected Totally alone"


This sounds a lot like abuse to me. Understand that this is a serious illness and you need to look after yourself or else there will be consequences. That means if the people in your life are hurting you - then you cut them loose. If you are at an age and ability to get some distance I would advise you to do so. There is little room in our lives for negative people and no room for abuse. Sorry if I'm overreacting.

crushingcrohns said:

:frown:

It's horrible that after several years with Crohn's Disease and still being impacted by the disease, my family does not offer me any support and are everything but compassionate. Anyone else have a family like this??? I feel like I'm the only one with this problem, as everyone else seems to have a great support system.
When I talk about the disease, they do not understand it, they think i'm lying, or they simply want to believe what they want. My relationships have been affected so greatly by this disease. I feel shunned and rejected Totally alone

Can anyone else relate here? How do you handle this because this rejection is making me depressed and stressed out all the time now. I feel that if I really needed someone, I have no one to turn to in my family.

Please write if you feel similar... Thank you and I appreciate you for reading this
tiara:

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oh god thats so my life and i get told dont worry your allways ill, your get over it you have done it before and thats my mother, thay just havent got a clue how people like us fell and its so upseting, thats why i was looking for a group for a bit of tlc take care x

Ekaj said:

"When I talk about the disease,...

- they think i'm lying,...
- ...I feel shunned and rejected Totally alone"


This sounds a lot like abuse to me. Understand that this is a serious illness and you need to look after yourself or else there will be consequences. That means if the people in your life are hurting you - then you cut them loose. If you are at an age and ability to get some distance I would advise you to do so. There is little room in our lives for negative people and no room for abuse. Sorry if I'm overreacting.

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I don't think you're over reacting. I think what you stated is a correct statement about what it really is and the healthy way to deal with situations that involve unsupportive family members & friends.
I have gotten to that place that I have stopped sharing my life and talking about my disease with people that refuse to TRY to understand it. I think after making several attempts to explain my life to certain people and seeing that they still have no understanding whatsoever about what I tried to explain to them and they still have the same thoughts about it, is a waste of time. I basically refuse to share this private information about my life with people that refuse to listen, because that is what they are doing. They hear my words but don't listen to them. It's rude and shows little compassion and care when you're ignored or not taken seriously. I'm done speaking to deaf ears. It makes my life less stressful, I'll say that much. Thank you for your posts. :hug:

Carrie630 said:

my blood family is not part of my support network. Whenever I have tried to talk to my parents about my ills they just yell at me and give me all kinds of reasons why it's my fault that I'm sick, and that it doesn't need a doctor just good old fashioned will power.
yeah... I don't tell them what's going on either. They came to visit for a week, and it was a very hard week. I hid my handicap placard to avoid that whole 'discussion'. They have no idea, and I've given up trying to give them one.

In general, my support network is very very small. I've been sick for so long that I don't have many close friends. I have friends, don't get me wrong, but I'm not sure I would have them if it wasn't for Kelly being social with them. They're definitely not my support network which pretty much consists of Kelly and my cats and dog. I have three close friends and a former co-worker who I would call in an emergency if I had to, so I'd call them my provisional network. They don't understand, but they will very likely drive me to the doctors/hospital/get my meds which I very much appreciate.

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I totally understand everything you just wrote. You will be so much happier not sharing with unsupportive people. They are a drag and just a downer. Every conversation you don't have, is another time that you will not be disappointed by negative words, stressed out and hurt by the rejection and lack of empathy from these people. Not subjecting yourself to that treatment healthier than listening to a barrage of negativity!! Hang in there & thank you

amssgirl said:

Hi crushing, I'm really sorry to hear about your family. I've got family members that don't understand my bf's Crohn's either, so I agree it's definitely frustrating when they don't get it, and you can't choose your family. (And I would love a pill like that, Lorie). On a side note I'm not sure if I have the opposite problem, I always feel so helpless because I feel like there is no way I can ever fully understand the things he must go through).

Unfortunately if family is not the strongest support system, how about friends or local support groups? As well, I've found this community is awesome no matter who are you relation to Crohn's; I've found a lot of people here who are in the same shoes I am, and it gives me comfort to know I am not the only one who feels this way or has certain questions.

All the best.

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God bless you Amssgirl because at least you try to understand and you're not judgemental and you seem concerned. To tell you the truth, you are right, you will not ever fully understand the disease because you don't have the disease. That doesn't mean you are unknowledgeable and not helpful to your boyfriend. As a Crohn's sufferer, all I want from people is to listen really. I find that the advice they give is not helpful and I just feel the less they say, the more helpful it is to me. I feel somewhat heard when they dont respond or tell me what to do. Once they open their mouths with something that totally negates what I just said to them, makes me think that I should have never shared with them from the get go. So, just know you are not helpless because you are learning from just listening to him and taking in what his needs are. Also, there are many things to do to not be helpless in regards to this disease. If you really feel you should do more or know more, do research and read about alternative medicine for Crohn's and medications that are not mainstream but work for people with Crohn's (I'm a big fan of LDN). You will feel like you have more power over the disease and offering that kind of info to your boyfriend would probably encourage him.
Trust me.. I have Crohn's. Crohn's doesn't have me! Tell him that and just encourage him with uplifting words. That alone could make all the difference in the world to him; making him empowered and lifting his confidence and giving him hope that he does have power over the disease :ghug:

hugs3656 said:

oh god thats so my life and i get told dont worry your allways ill, your get over it you have done it before and thats my mother, thay just havent got a clue how people like us fell and its so upseting, thats why i was looking for a group for a bit of tlc take care x

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I'm so sorry, I understand everything you are saying. Keep coming back to the forums for support, you will always encounter people that get it and know your heart and difficulty. Like me, I feel for you. You are never alone. Remember that:hug:

jonnyb said:

I'm really sorry to read people's stories in this thread...it makes me sad and angry to know that there is such a lack of support and understanding from family and friends.

It's a similar situation with me and i've become increasingly frustrated in the last few weeks with how people have been reacting since I became ill. Most people choose to ignore it and even when I try and bring it up with them, their reaction is usually "oh well...these things happen...anyway..." as if it's something like a cold that will eventually pass. If only they knew.

I've suffered from mental illness most of my life so I'm used to people turning their back on me but it still doesn't seem to ease the hurt each time it happens.

Keeping a diary has always been beneficial to me..it's the one place where you won't be judged and you can say whatever you feel without being inhibited or ashamed of what you're feeling and thinking. And now I've found this forum too which is such a blessing.

Be strong everyone and try not to let other people get you down. Living with crohn's is tough enough as it is.

I'm really into my quotes so here's a few ones to remind yourself of when you feel like no-one else understands or seems to care what you're going through:

"Nobody can make you feel inferior without your consent" Eleanor Roosevelt

"Don't let other people's opinion of you become your own reality" Les Brown

"Pay no attention to what critics around you say. Since when has a statue ever been erected in honor of a critic" Jean Sibelius

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:hug: Thanks for those quotes. I like that. It's sad to read these posts, but my plan is to show an unsupportive family member this page. Not to say "you are shitty just like all the other unsupportive family members", but to show them that they, like all of your family members should WAKE THE F UP LOL. Stop living in ignorance and get some knowledge. I think it all has to do with if they really care enough about the situation to actually read about the disease. But anyway, maybe when they read all of the misunderstandings and apply what they read to their lives, or associate it with their life rather. Then maybe they will actually feel something like guilt or sadness about the way they have treated someone so sick.

For all the times I've cried, they deserve to feel a little bit of guilt and shame for the way they are and their lack of care. I've gotten much more bolder and don't take rude and disrespectful comments anymore. I have seen their lack of care and If I'm disrespected by the foul words that spew from your pie hole, I am throwing them right back into your face. Maybe I'm angry... Yes I'm angry, especially because the ignorace continues and I'm disgusted. So if someone shits on me, I will wipe it off and throw it back in your face.
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Forgive me for joining the conversation so late. I've only just joined this forum.
As for telling people off, I guess this depends on how important it is for you to express yourself in such terms. In the over 30 years that I've had Crohn's I've found no benefit in doing so. I've found it damaging to what relationship already exists. And since, in at least some cases for you, they're family you will probably be seeing them again.

As for me, I've had some friends and family over the years who have started in that gray area between selfish and "not getting it" (i.e. first worried about catching it. Then telling me about how I should change my diet....etc.) and then come around after seeing things for themselves. Had I told them off right away, I'd have missed out on some ultimately wonderful friendships and caused rancor within my family.

In summary, some people just need time and experience (second hand, preferably) to "get it." All you can do is be patient and interact in a way that's comfortable for both you while they gain the knowledge and experience to "get it." Others will never get it. And you don't know who is who up front. Only time will tell and only if you let it.