Feeling alone...

Crohn's Disease Forum

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Joined
Jul 5, 2009
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Hi all...does anyone else feel really alone with their condition?

I have a family who love me and although they do their best for me, I can't talk to any of them about the disease and how it effects me. I get so down about the impact this has had on my life, it turned it upside down.

My mum just cries when I try to talk to her,( I almost think she feels guilty which is ridiculous!) and my dad just can't cope with the fact that he can't he can't ride in on his white horse and resue me. I don't like to talk to my friends too much about it as I feel like I am bringing them down and depressing everyone. If I'm honest, my number of friends rapidly decreased since I got sick. It's amazing how quickly you learn who your real friends are when you have something like Crohns and can't do everything you used to do!!

I have considered counselling of some sort but can't quite bring myself to do it. I get so down sometimes, but I don't bother to mention it anymore, I just smile and carry on as best I can, but I just can't see how I can move forward...

I'm sorry this all sounds so miserable, but I am really struggling right now and this forum gives me such support, I thought maybe telling someone ( even if it is a virtual someone) may help a little...

Sorry again to bring such a downer into discussion...:-(

Bethany x
 
Hi Bethany, your post brought tears to my eyes! I know I definitely feel the same way pretty often. My family also tries but they cannot understand. I'm the only one in my family who's ill, so they all try to understand but none of them really gets it. It really is isolating to feel so awful and to not have anybody who understands 100% what you're going through. I'm fortunate that I have a good friend who has crohn's and she and I can talk about our struggles and pains and symptoms, which helps a lot. And as you said, this forum helps a lot with feelings of being alone or sadness.

Do you have any friends who have similar issues? When I first got sick, I thought I didn't know anyone else who had a similar illness. But then I started to notice that the more I talked about how poorly I was feeling, the more friends,co-workers, and acquaintances would discreetly tell me that they are having similar problems but were too embarrassed to talk about it until I started talking about my symptoms. So maybe you do have friends who are going through something similar but are too shy to talk about it?

Another thing I can suggest is to NOT keep it all bottled up inside. If you're mad, get mad, and if you're sad, let yourself cry, and if you're in pain, let it show. Don't mask it for the benefit of others. I did that for awhile, and my husband and I eventually had a big fight because he said he thought I was psychosomatic and not really that ill because I never looked or acted very ill (even though I was running to the bathroom all the time!). So now I don't hide that stuff from him, if I'm in pain I let him see it instead of putting on a smile and acting like I'm okay. I'll tell him about the pain and how severe it is that day and how frustrated I am and so on (I usually leave the poo talk out though, that's not very sexy, ha ha). He's become a lot more sypmathetic to me being ill and he's never used the "p" word again since that fight. :)

If you're still feeling alone, try doing something nice for yourself and see if that brightens your day. Buy yourself a small gift or watch one of your favorite movies or take a lovely bubble bath or take a walk through the park on a nice day. Things like that always improve my mood. Good luck, I hope my post helped you at least a little bit.
 
I think we all feel this way from time to time. I've had crohns now for 20 years and I still have issues with my family not fully understanding (they think I'm overreacting and that I'm not pushing myself enough). I never lost friends over it though. Probably because I weed out all the people I know I won't get along with forever and keep few friends as a result. I think I tend to push people away before they have a chance to push me away but I'm ok with it because I feel that people really only need a few good friends to get by.

There's nothing wrong with seeking counseling. Its a good thing really and I think everyone should. Talking about it helps a lot and knowing that you can say anything to them without judgment is such a relief. They understand and they help you get through the tough times. I know its hard to make yourself do it but just try it out. You don't have to tell anyone that you're going if you don't want anyone to know.

We're always here and love virtual friends and company as well. Feel free to talk about anything. :D
 
Hi Bethany.
Sorry you feel so alone. Crohn's is still very new to me but my experience thus far is that people dont know what it is and then minimize it by saying I need to eat more fibre or more vegetables (eventhough they have never actually known what I eat) or they say its not a big deal. Nobody really knows what it is. I find while I was going through my tests, a lot of people were saying "oh, you dont have it" or commenting on how I am probably anorexic, etc. I think the majority of the people I have for support are coming from a good place and believe the concept "think positive thoughts and positive things will happen".... I also dont think its my responsibility for me to educate them - I have the disease, thats enough for me to deal with right now. I might just hand them a book or something and see how that plays out. I know for me, my support people would probably flip through it and educate themselves. I also realize that this is your family and they are so much more emotionally connected to you and thus hate to see you suffer so much. If it were my daughter, Id want to take it from you as well. Im not trying to excuse their behaviour as there are some very proactive, parents on here looking to get every morsal of information they can to help their child and to support them the best way possible. Can you let your mom or dad read the posts here or talk to the parents here? What about giving them articles to read at first so its not so overwhelming?

Anyhow, I dont know what to say but I dont think youre a downer - you are expressing how you feel and I think we all have done that at one point (okay..maybe me more so than others ...haha).
I also find it helpful to add people on my facebook so that the support is also off the site as well. There are some pretty amazing people on here!

Take care and I hope things turn around for you soon :)
 
You are not alone, Bethany! :) Welcome to the forum! So glad you found us!

Corhn's can be an isolating disease. It's been difficult for me dealing with isolation since being diagnosed, especially since I took the semester off due to being sick and I'm jobless right now. I also moved to Chicago 2 years ago and haven't been able to make many long-lasting friends since I wasn't in school for very long before getting sick and before that I had a job that I eventually quit to go back to school. My husband has been the one constant support system for me. My parents live in Florida. My mom is constantly worrying about me and my dad kind of ignores the fact I have Crohn's, I think. My sister thinks I can cure it with natural remedies.

Finding this forum was a tremendous support for me! I have met SO many great people on here that I can consider friends. I can always count on the forum to help me out when I need to vent, cry, laugh, and worry. I've also seemed to notice that a lot of people on here say they have or still do experience struggles with depression. It's hard dealing with a disease that is so unpredictable and out of our control and associated with symptoms and body parts that society doesn't always want to hear about. So many people don't talk about it or glaze over how much pain they suffer from. Who wouldn't feel depressed??

I agree with Cat and Crabby about allowing yourself to express the emotions you feel. Don't hide it and if you need to talk with someone who is unbiased like a counselor. They aren't there to judge you or tell you you re wrong. They're there to listen and help you work through your feelings :)

Since being diagnosed I've found out a girl I knew in college has Crohn's and two of my husband's coworkers suffer from IBD (one with Crohn's and one with ulcerative colitis). They've been so understanding of our situation and have been incredibly supportive during times when I was hospitalized. My husband says he still comes in to work and has people asking how I'm feeling :)

Also...there are plenty of people on the forum from the UK. Maybe talking with some of them will take some of that feeling of isolation away. Look up your local chapter of the Crohn's and Colitis Foundation and meet people in your area too!
 
Bethany,
I am so sorry you are going through this! I hope you find lots of support and comfort here. We are all behind you!
 
I am sorry you feel so alone. It can be a lot to take on. I use this forum as my support group. My family has no idea what I go through and sometimes I just get tired of trying to explain how I feel on the inside when I might not look sick on the outside.

Are you in a flare right now? Do you have a lot of physical pain? This can wear on your body and induce depression. Definitely look into counseling, medication, or a support group. You don't have to feel alone...at the very least we are all here for you.
 
I think that, not matter who they are or how much they can sympathize, no one can ever feel the same way you do. Not even those of us who are going through much the same things. It affects everyone differently. And we all have different "mental insights" as to how it affects us as well.

I was diagnosed as a kid. My mother wanted to wrap my in bubble wrap so no one could ever hurt me. My dad kept saying, with every new medication or surgery, "Well maybe this time....". I think my husband has come to be the most understanding and valuable support I have.

He KNOWS there is no cure. He KNOWS I am in pain. He KNOWS he can do nothing about it. But he is there to rub my back when I am sitting crying on the toilet cause my butt hurts when I poop. He is there filling the tub with hot water when I need to soak to ease some of the pain. He is there with the heat pad and extra pillows to tuck me in when I can barely move cause I hurt so much. And he is there when I am crying and screaming because I am so angry...at the world...at the doctors... at myself....at whichever god decided to inflict this stupid cruelty upon us. He does, however, tend to disappear when I actually start throwing things....... heheee!

Don't ever be ashamed to seek councelling. It is a proven medical fact that any chronic illness and depression go hand in hand. If it helps to talk, then you need to talk. It is easy for those of us who are not in that depressed state to sit here and say...."Be patient, it will get better". I have been (I am sure all of us have) at the bottom of that hole...and it always looks like it is such a looooong way up.

If you find comfort in reading of the misfortunes of others, do so. Maybe someone on this site is having just a bit of a worse time than you are right now. If you need to read their story to make you think, "OK, I am not quite that bad" then do so. Or maybe you are one of those that just needs a really good cry and you will feel better. then cry your little heart out. Or maybe you need to yell at that person who is telling you you need to eat better. Yell at them! If they are truely your friend, they will understand when you apologize to them later.

Just please don't give up hope. Sometimes that is all we have.

(((((((((((((( Bethany ))))))))))))) Hang in there.....
 
Wow...thanks everyone. Ironically as I write this, it is bringing me to tears, I am really touched by your comments, yet as I am sitting in the living room with my folks, I am just holding it all back as always!! I just feel like my family can't cope with the fact that I have this disease and there is no cure. They seem in denial about the fact that I WILL get sick again and I WILL be in and out of hospital for the rest of my life. They have a habit of saying ' you will be fine' or when I talk about my next trip to hospital, they act as if it will never happen and I will be ok from now on.

I have an appointment on friday to decide if they are putting me on Remicade, and I was talking about this with my mum today and she started talking about something else that distracted her, mid conversation! I honestly don't think she realised that what I was talking about was actually quite important to me and I'm really quite worried about it even though I have said those words!

So I mean it's not like they do it on purpose, they love me and do the best they can. But it's like they are shut off somehow from how much it effects me. I don't like to make a big deal of it as they get upset and I feel like I just upset everyone and ruin everyones day.

I just find it is better for everyone else if I keep it inside... and then cry myself better in the shower or somewhere where noone knows, how pathetic is that!! lol! I actually can't believe I am telling people this!!
 
Bethany, I'm sorry your feeling so bad. I wish your mum was more supportive, but perhaps she feels guilty or just maybe it makes her too sad. It could be she needs your help as much as you need hers. I don't know really I'm such a stoic person anyway it's hard for me to find something useful to say when it comes to emotional stuff.

I responded however to relate what both me and my wife go through.

My wife lost her sense of smell to cancer. So she's always confronted with smell conversations. Someone will say "oh that smells good" and she has to either remind them she can't smell or just fib and agree. So she sort of suffers alone sometimes.

Which is how I feel lately when people ask me how I feel. I mean it's nice of them to be concerned but my symptoms are irregular. I can feel great one minute and the next I feel terrible. So my answer to "how do you feel" is to describe the moment, when I know they are asking me in general as if I were getting over a cold, so when I say "I'm feeling good" and they "oh I'm so glad", it's like I want to say "yeah but all I need to do is catch a whiff of some food and my guts will twist in knots". lol, but of course I don't say that because it's too complicated. So in terms of relating how I am health wise to other people, this can be a lonely disease. Not to mention sometimes it's juts too gross to discuss. lol! Except here in the forum, we're comfortable with poop! :lol2:

I hope things get better for you.
 
I completely empathise with you. It's so tough, isn't it.

What I'm going to say next is really harsh but it's how I honestly feel (sorry if it offends anyone).
How I feel is that if you have cancer (in whatever form), you can tell people and they will immediately treat you as if it's worst-case scenario.
However, you tell people you have Crohn's/IBD and...the first thing they do is look puzzled (how many people even know what it is?!) and the second thing they do is carry on talking about something else.

I get the distinct feeling some people think it's some airy-fairy, poo problem that doesn't need more than 30 seconds thought.

For example -
I have been ill for nearly a year now.Properly ill. Massively underweight, pale, depressed, exhausted, tearful etc.
My friends know this - they see me every day.

I picked up my children from school today and one of said friends asked how my appointment had gone yesterday.
I shook my head and said it was all too depressing, to whichshe replied, "hmmm, you do seem a bit low this week. Perhaps it's on eof those natural dips we all get from time to time".
I then explained that, today, I had been unable to get out of bed until nearly 2pm, hubby having gone to work at midday. Her response was, "who was looking after Kit (my 4 yearold son) while you were lying in bed!!!".
To her, I was clearly not doing my mothering duties, and for no good reason.
Not once has she offered to take my children, asked how I am, asked if there's anything she can do to help - and she's an ex-nurse who has looked after many IBD sufferers, I gather.

My neighbour, when I came home, commented that I'd lost loads of weight (why do people think this is news to us, like we can't see it for ourselves?).
I explained that I'd been dianosed with Crohn's and she said, "Oh, it sounds like that chronic fatigue thing people get".
If only that was the whole story, eh?

Even my mother tries to tell me to eat more and go to bed earlier - the answer to all things, apparently.

I want a t-shrt printed that says:

"I have IBD
It's real, incurable illness.
I am ill.
I AM eating.
I do try to sleep.
Yes, I have had a camera up my bum.
No, it's not funny.
Please ask me how I am and ask me if you can help at all.
No, trying to relax won't make it all go away!"

Do I sound bitter yet?
 
I want a t-shrt printed that says:

"I have IBD
It's real, incurable illness.
I am ill.
I AM eating.
I do try to sleep.
Yes, I have had a camera up my bum.
No, it's not funny.
Please ask me how I am and ask me if you can help at all.
No, trying to relax won't make it all go away!"

Do I sound bitter yet?

I want a t-shirt like that too! I think I would add another couple of lines that say something like, "No, I'm NOT crazy, and no, it's not just stress!"
 
Bethany..I am sorry your feeling down and alone. Most of us on this site can relate. I hope the posts will bring you some comfort. Each story I read has the same thread. No matter what the ailment of crohns is, it is painful both emotionally and physically. I have said this before, I hop sometime the hospitals have some sort of support group for us...or something. Sue
 
Hi Bethany

Sorry you're going through this difficult time sweetie!
hope you find solace here, cos we've all been there in that dark place! friends on here have said some wonderful encouraging things to you, and whilst it's not the same as 'real' friends, hope we'll do for now!
When people say to me, 'Hi Joan, are you ok?'
I just say 'No'
They say 'Oh no, why, what's up?'
I say 'Well, have you time whilst I bore the arse off you?'
They soon do a runner!
This is cos I'm an old, bitter, twisted, mature Crohnie, and have stopped explaining how I feel, cos I've realised no-one but me can help me.
Only a Crohnie understands a Crohnie!
I say all this to you, cos I know, in time, this is the only conclusion you will come to, and your parents will always love you and support you, but maybe there will never be that understanding, something that you will learn to accept as you get older and wiser.
I wish you well, and remember, we are always here.
Joan xxx
 
My mum just cries when I try to talk to her,( I almost think she feels guilty which is ridiculous!) and my dad just can't cope with the fact that he can't he can't ride in on his white horse and resue me. I don't like to talk to my friends too much about it as I feel like I am bringing them down and depressing everyone. If I'm honest, my number of friends rapidly decreased since I got sick. It's amazing how quickly you learn who your real friends are when you have something like Crohns and can't do everything you used to do!!

Hunny, this is exactly how I felt a few months ago, yes you do learn who your real friends are which just hurts even more when others disappear and yet it still doesnt help I have had apologies from those who weren't around when I needed them most. My mum sounds like a complete duplicate of yours, she has absolutely no helpful input simply because she doesn't know how. Which is SO FRUSTRATING!!!

I didn't believe it when people told me because I was just like "you have no idea!" but things will get better at some point you will feel better both physically and emotionally... I was having counseling whilst I was really ill however havent had to have any since getting better after surgery, because I was mourning the life i'd lost.

I think you're braver than me because I even keep my unhappiness off this forum because I just couldn't bring myself to put a downer on a lot of people who were also suffering, or atleast what i thought would be a downer, because there is someone out there who has felt what you felt and you can get such incredible help from this site. :)
 
Bethany, I dont think its pathetic at all. I think you are doing what you need to do to take care of you. Whatever that is. What your mom is doing is painful and silencing.- sounds like a really difficult place to be in.

Just a thought along with the counselling suggestion though, try to be mindful that if you do decide to go a lot of counsellors don't know what IBD is and may also frustrate you. It might be good to find someone who knows what it is or at least willing to read up on it while working with you. This is your right to ask of a counselor as you are their employer so to speak. YOU hire THEM! You have every right to interview the person you call to work with .. if it doesnt sound like a fit - move on to the next until you fiind someone who does.

I have to keep in mind myself when people know I have IBD and make obscure suggestions (you just have to eat better or think positive or eat more fiber, etc) that most people like to help and most people like to fix other people or find the right answer for someone to help them. I do it all the time as I dont like to see people suffer. If they dont understand the disease, then they cant possibly help make suggestions or they risk sounding like a dumb ass. Its hard to know if they are making flippant comments/suggestios to shut me up or are they actually making an attempt to help ME feel better or are they trying to make THEMSELVES feel better? Sounds like your mom is focused on making herself feel better.

You also have the right to be specific with your friends. I am fortunate to have friends that I can say "I just need you to listen" and they will or "I need a suggestion" and they do. A friend offered to sit down with me today to call my doctor to get some answers. She may not know what the doctor says or what the information means but having someone with me is her way of offering support and showing she cares. She may even make some of those comments re: just be positive - but I know without a doubt she is doing her best with the information she has. My doctors dont know what is going on with me yet and I dont know whats going on with me yet, and she doesnt either. Whoever suggested to you to call the local Crohn's chapter might be worth considering. I have thought of that myself from time to time.

Anyhow, please be gentle with yourself first. You're not pathetic or a downer. Youre doing what you need for self-care. Be proud of yourself for that.
 
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I think you're braver than me because I even keep my unhappiness off this forum because I just couldn't bring myself to put a downer on a lot of people who were also suffering. :)


I really truely hope this isn't what I have done...thats the reason I haven't said anything up until now and I really hope I haven't made anyone feel worse about their own situation...
 
Sorry to speak for you Claire but bethany, I don't think that was what Claire was saying. I think she was saying that you are BRAVE by coming to this forum expressing how you feel. I think (and correct me if Im wrong Claire) but I think she is trying to say that she isn't there yet. My perception of Claires post is that she is relating to you - also worries about the same things.

Wow... are you always this hard on yourself?
 
Hi Bethany,

Your story and lonliness hit home for me, too. There is one thing I want to share with you first. It is a thing that's kept me alive, and it's helps me keep my priorities straight. It's my "emotional marker" - something like a "sideline" or the "foul line" in a ball game. WHen something gets beyond it, it moves "out of play".

I've learned this because I'm 51 years old, and there are things in this life that I enjoy so much, and I want to live every day I have left in my "datebook" before that final "appointment". I want to live now, because I've been close enough to that "final appointment" times enough to know that where I am now, is right where I want to be...even longing to be.

Crohn's disease is not the only "incurable" diagnosis I've been given. When you accumulate maybe 2, 3, or 4 conditions that have no hopeful prognosis and leave you with more questions about your future than answers, then something inside must change. Otherwise we will whither, get lonlier, become more isolated, and we will die.

I don't have Crohn's disease for the rest of my life. I only have Crohn's disease today - I only have Crohn's disease 24-hours at a time. If you look at the Crohn's timeline from it's first case in 1915, I believe, until now, you will find treatment has become progressively better and more sophisticated. It's not a wise investment for me anymore to think about my conditions with "no cure" beyond the next 24 hours. I only have today to be alive. I will take being alive today with Crohn's disease and every other disorder or condition that I have over any other alternative.

It's the only way I can "live", not merely survive, but live. Once my thoughts or emotions begin to start stretching beyond today, thats where my "emotional markers" are set. Out of bounds. Foul ball. Doesn't count. I'm not saying that I don't plan or set goals or have expectations. Those are also in place and that gives me a roadmap of where I'm going to be driving today.

Once I figured out the sensibility with living this way, I was hooked. A light went on in my head and I have lived one day at a time ever since. I never want to go back.

The other "emotional marker" that I have in place keeps those lonely and depressed feelings confined to only a certain amount of time and energy. Listen Bethany, I have the same disease as you and the thousand or so others on this forum. I get depressed...I feel lonely...I get isolated...I'm many times over, misunderstood.

I let my feet direct my thinking instead of letting my thoughts direct my feet. I ask myself one simple question - I learned this from a Jesuit priest. Is what I'm doing constructive? If the answer is "no", then I can't afford to invest anything more into thinking. I don't want to invest in something that isn't giving me a return - that return is "living". Call it selfish? I call it self-concern. My feet MUST start moving or I already know I will get stuck. I know because I got stuck for 4 years with clinical depression. Constructive action never fails.

If I'm needing a friend, I do some math. I try to be the friend I need for somebody else. They might be lonely or have a world of friends...it doesn't matter. If I give what I think I don't have to another person, I get back what I needed all along. Maybe I thnk about someone in the past that I've laughed together with. Then I take an action - I pick up the phone and dial. Whatever I do, I know my mind needs to stop moving and my feet (or fingers) need to start moving.

I understand. I hope it doesn't seem to you that I'm being insensitive. Bethany, if you are hurting, I want you to have everything that I have that makes me feel alive. I've tried to put that into words, hoping you might give it a try to see if it works for you, too.
 
Thank you all so much for all your kind words!! I'm really very touched and am trying to take on board all the advice you have each given. I guess we all have our dark days, and it just seems mine have been thick and fast recently.

I have become stuck in a rut and can't really see my way out right now. I feel like I need to talk to someone, but my circumstances being as they are at the moment, the only people I feel I could burden it all with are my family, and well, you now all know how that works out!! lol! So I think I may seek out an IBD counsellor via the NACC if I don't find my way out of this little hole!

'Regular Joe' - thanks for the advice, my attitude is ordinarily I think quite similar to yours. I try to live each day as it comes as I have learnt that I cannot control tomorrow. It's just difficult to see that right now...

'Keona' - yes I am afraid I am often quite hard on myself. I get angry with myself and my body for being like this and feeling this way and can sometimes beat myself up over it. I try to work it out my system at the gym but I haven't been able to go recently so I have some built up frustration with myself I need to let out...arrggggghhh!!!! :)

'Astra101' - Totally agree r.e Crohnies understanding a Crohnies. I assumed when I was first diagnosed that people would understand, but I don't think you can really (as with most things) unless you have walked in the shoes!

Oh and 'Chickpea' - I agree that I you should really make up some t-shirts with that on!! I would buy one in each colour! Brilliant!

And thank you again to everyone else - You have all made me smile for the first time in a while with your general lovelyness....THANK YOU! :-D
 
Hey Bethany
I can relate with the not being able to go to the gym. I am lucky if I can get off the couch as I cant stand for too long. I use to be an avid runner and can not wait to get back in to my running shoes :) There is no better high than a runners high!

One thing I do b/c I cant burn off the frustration in my usual way is keep a journal. I dont worry about spelling or grammatical errors - just write or scribble. I also take up art - drawing, etc. It doesnt have to be good just alternative ways of expressing myself. I usually do this when I cant be with a supportive person and have to develop my own coping skills.

Hang in - nothing wrong with expressing yourself and being frustrated ..
 
Bethany;
I just caught up on this thread and am so touched to see all the love and helpful advice from the other members of the forum... Just being here is a great first step to not feeling quite so alone. It's going to be hard or impossible for others to really understand what you are going through.

I just wanted to add my two cents and really recommend finding a counsellor to speak with. Talking to someone about your problems feels really good - and after a few sessions you might be surprised with what you learn about yourself! I'm not sure how it works in the UK, but here you can either ask your doctor for a referral, or some clinics have 'drop-in' counselling available and then you can sign up for long-term. Maybe you can access someone through your school or workplace? Support groups are a good resource, too; if you can't find one that is IBD-specific, try maybe a chronic illness group? We have a lot in common with people who have diabetes, CFS, chronic pain, etc, etc... The illnesses we have affects our daily lives and a lot of the coping strategies are the same. Wendy has a great idea with keeping a journal. Be kind to yourself. Best of luck to you, and please remember that you aren't alone!
 
Hi Bethany
hope you're feeling a little better huni?

When you feel up to it, have a look at this, this saved my life, and I use it everyday as part of my life now.

http://www.rcpsych.ac.uk/mentalhealthinformation/therapies/cognitivebehaviouraltherapy.aspx

I use this as part of my work with ASD and have had training in it, I can help you, but you've got to see someone trained in this to kick start you off, and of course, a referral from your GP
Take care Bethany
xxx
 
Bethany, I'm so sorry you're going through this, and like so many have said before I know what you are going through... where I live now is tough with that to the point where I don't like to use the bathroom and dread it each time because I worry what they will think.

But it won't be forever and as time goes on they will learn more about it. I think my family were thrown head first into it because I was on the point of collapse when first diagnosed and running a dangerously high fever. But also I've never hidden any details from them.. I'll tell them straight up about all the poo and the puke, and the low energy and the cramps..

I hope your family comes to understand, I know how hard it is. One of my friends thought I was having "ladies problems" and that's what he told everyone when I was in hospital!!

I also relate to not going to the gym... we have a gym on the campus here where I work but I can't use it.. and jogging I LOVED but it's hard now.. When I was first diagnosed I took up cross stitch and sewing, when I'm sick I can keep my brain occupied while resting. Right now I'm making a soft toy tiger!
 
Bethany,

I completely understand where you are coming from! That is the same reason that brought me here. I don't know anyone else who gets sick as severely as I do. I have an aunt with IBS, but her stomach condition is VERY managable (and I'm happy for her...no one should have to go through this kind of pain). Like your mother, mine also feels guilty for my disease!

I've been dealing with my awful stomach for a LONG time, and honestly do believe I've got a pretty good handle on it emotionally. I've been dealing with it for almost 30 years, and have gone through EVERY emotional extreme possible! I've finally come to a point where I can love myself, not believe there is something wrong with me, and see that I AM deserving of love even though I have this disease (as we ALL are!!). I'm working on being patient with myself...because if I'M not patient and understanding with my illness, how could I expect others to be patient and understanding of it?? I've even found positive points to having this disease, believe it or not (and it was NOT EASY coming to this realization!) It serves as a damned good filter when it comes to people in my life...I would never have imagined that I am THIS strong and capable...I enjoy my life as much as possible, because I know this disease can potentially take my life away from me.

But even with all of this understanding that has been unfolding lately, I still get down in the dumps at times because I feel like I'm the only one going through this. It's tiring for me, sometimes, because I'm around all of these people who don't understand what I have, and quite frankly are frightened by it (those who have seen me at my worst pain moments), and I feel like I ALWAYS have to be strong and brave about it so that they stay strong and brave about it. I'm helping THEM cope with MY disease...how twisted is that?!

It is REALLY nice (but also makes me sad) to see SOOOOOO many people who understand and are going through the same thing. I'm glad I found this place, and I hope you find the support you are seeking as well!!

~Sam
 
Hi Sam
and welcome

I've asked one of the Mods to move this post to one of your own in the your story section so that everyone will see it, and give you the big welcome you deserve!
glad you found us, enjoy the forum
lotsa luv
Joan xxx
 
Bethany- I am so glad you have found this forum and you are able to express yourself here. Noone really knows what it is like to have Crohns except those who have it- My son (15yrs) has Crohns and I know it is so hard for him- luckily we talk and he can express himself to me- BUT I think the only reason he can is because I have a spinal cord injury and nerve damage- I am in pain every day of my life- so I know how he feels in some regards- the feeling of being alone, the huge toll constant pain takes on you- the just "wanting a normal life" feeling. I am sure your mom wishes she could take this away. Us moms do feel guilt about -well- everything!! It doesnt have to make sense- we just do.
My son is a teen and definately finds this affects his social life and friendships. It is just so hard.
You know what is great about a therapist? You are paying someone to sit and listen to you for an hour and you can talk about anything at all without it leaving the room. You dont see them in class, at home, at parties- its seperate. They ( should) listen without judging and are there just for you and to help you! They are not emotionally attached and are not going to sit and try to offer you advice like "my cousin's aunt's sister's neighbor has Crohns and the ate pineapple for a week straight and hasn't had a pain since" It might be something to consider, seeing someone. Just talking here in this forum hopefully will help, too. You can be open and honest- people will understand, you dont have to hide anything and noone will judge you or think you are exagerating, etc. ( my son tells me he feels people think he is exagerating his symptoms to get out of school, etc. despite his 70lb weight loss!!)
I wish I could just give you a great big hug and tell you that no matter what happens you will get through it- day by day. I hope you keep writing here and let us all know how you are doing.
 
I completely empathise with you. It's so tough, isn't it.

What I'm going to say next is really harsh but it's how I honestly feel (sorry if it offends anyone).
How I feel is that if you have cancer (in whatever form), you can tell people and they will immediately treat you as if it's worst-case scenario.
However, you tell people you have Crohn's/IBD and...the first thing they do is look puzzled (how many people even know what it is?!) and the second thing they do is carry on talking about something else.

I get the distinct feeling some people think it's some airy-fairy, poo problem that doesn't need more than 30 seconds thought.

For example -
I have been ill for nearly a year now.Properly ill. Massively underweight, pale, depressed, exhausted, tearful etc.
My friends know this - they see me every day.

I picked up my children from school today and one of said friends asked how my appointment had gone yesterday.
I shook my head and said it was all too depressing, to whichshe replied, "hmmm, you do seem a bit low this week. Perhaps it's on eof those natural dips we all get from time to time".
I then explained that, today, I had been unable to get out of bed until nearly 2pm, hubby having gone to work at midday. Her response was, "who was looking after Kit (my 4 yearold son) while you were lying in bed!!!".
To her, I was clearly not doing my mothering duties, and for no good reason.
Not once has she offered to take my children, asked how I am, asked if there's anything she can do to help - and she's an ex-nurse who has looked after many IBD sufferers, I gather.

My neighbour, when I came home, commented that I'd lost loads of weight (why do people think this is news to us, like we can't see it for ourselves?).
I explained that I'd been dianosed with Crohn's and she said, "Oh, it sounds like that chronic fatigue thing people get".
If only that was the whole story, eh?

Even my mother tries to tell me to eat more and go to bed earlier - the answer to all things, apparently.

I want a t-shrt printed that says:

"I have IBD
It's real, incurable illness.
I am ill.
I AM eating.
I do try to sleep.
Yes, I have had a camera up my bum.
No, it's not funny.
Please ask me how I am and ask me if you can help at all.
No, trying to relax won't make it all go away!"

Do I sound bitter yet?


i can relate to your experience of people not understanding and making stupid assumptions and comments. it really annoys me when people shrug off my sickness and say 'oh, you'll be right' .. 'you'll feel better in a few days' .. like wtf.
 
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