Why always keep a straight face?

When I'm sick and in pain I don't look too happy. But I can't help it. I didn't choose this disease. No matter where I am either at work or with my family it just happens that I get cramps and urgency. How do you put on a mask to overplay this? This seems impossible to me. A lot of people complained because I always have a nasty look on my face. I wish I could smile all the time but how when you're constantly in pain or worried you won't make it to the next toilet.

quincy said...
What are they complaining about exactly? the fact that you look and act sick?

Yes.

Even my friends don't understand that I'm sick and are even more angry. As if the illness itself wasn't already bad enough

Does anybody have or had the same problem?

Does it really require a mask and always smile?

Thing is, I live with my family so even if I stayed home there is always someone there.

I just don't understand why people take it so badly when you're not feeling to well. Even back in Germany everyone took it bad. Sure I stayed home a lot but then there was my mother and stepfather who got angry at me at times. I often get frustrated and wrongly let it out on someone who doesn't deserve it. By that time I was in a flare for years and I explained my mom that I just cannot help it. I told her if she was in pain for a couple of years straight, she probably would feel the same as me. My stepfather accused me of being hypochondriac as in faking the sickness One day I clogged the toilet and he got sooo mad. I should have let him take look into the toilet with all the blood in it to make him believe me :/

How do I make people understand it's not against them? Also every time I tell others my limits they get angry. I just cannot be without a toilet for hours and hours to come. I always need a restroom break and I don't have unlimited energy like healthy people. And I cannot eat everything.

I feel like a burden to my surroundings. And even after 10 years I don't know how to deal with this.

Explaining how you feel is always difficult, especially when people can't 'fix' you they feel impotent and think you should just scrape yourself up and move on.  I've mainly experienced this with men. Staying in, not drinking, or not being the fun girl they know is hard to describe isn't it. When you look relatively healthy from the outside with no injuries or flu like symptoms its impossible to say "look i feel like a knife is moving thrugh my stomach, I'm gonna cry for ten minutes and then I'l laugh at your joke", or "no you cant walk me home because I'm going to crap myself halfway there" And it sucks they dont understand.

Saying that, I dont want them to understand, because to do that they've got to have been poorly too, and i wouldnt wish that on people. And a lot has got to be said about a positive attitude and not dwelling on the crap moments. dragging your ass out the house, moving around, exercising (even the slightest bit) all help to feel better. distractions stop the pain a bit, and having something to look forward to in life.

Don't let an illness define you, it's part of your life, but it is not you.  Don't let depression take over, but don't ignore the very real posibility that it could be effecting you. its nothing to be ashamed of either, and is an illness which needs help.  Use us on here to vent your frustration and try to accept whats happening to you. 

I don't put on a mask other than to hide the pain though. I'm fortunate, my mother has ceoliac disease and my father has Ankylosing spondylitis.  I still remember the day he came to hospital and said "i have no idea what you're going through, when the doctors told me I would be in a wheel chair by 40, i was also 23 and single and felt my life was over" I think he understood what I was going through perfectly. (fortunately he's 63 and not in a wheel chair, in agonising pain daily but still gardens, gets out and worked up until a few months ago when he retired)  And my friends got used to me throwing parties rather than going out, or walking painfully slow everywhere when I was at my worst.

Sorry to write an essay. and try be positive, but don't fake anything.

I feel like that too on some days...this disease is such an emotional rollercoaster: it is embarassing, humiliating, incapacitating and disruptive. It robs you of the simple joys of life like going out, eating out and all the fun stuff really!! i reckon it's even harder if you are young (which most of us are)...i feel like i have aged ten yrs thanks to the crap i go throu especially the ups and downs. One day you feel great and you think woohoo this must be working i can now live and forget and then the next day you are sh***ing blood in the toilet, or doubled over in cramps.

It's hard when what you are fighting is something part of your body, like something innately wrong with your body. You just don't know how to fix it. No one knows what the cause is so as someone said before (i think it was Somedude) "you just have to keep trying random bullcrap until you find something that works". Till then we are more than ALLOWED to wallow in our misery because yes it is miserable and difficult. But on the other hand yeh it could get worse. So yeh there are always things to be thankful for.

As q would say: hang tough :)

Thank you all for your kind words. I will keep this thread subscribed. You guys know how to build someone up.

imagardener2 said...

And lastly if you are feeling bad you need to find something to make you feel better. Is it cramps? Have you ever used Bentyl?
What exactly makes you feel bad? Maybe people here can make suggestions. You shouldn't continue feeling poorly. Better management of your UC symptoms is needed. You may not become pain free but you can feel better if you feel more in control.

Yes, cramping. Never heard to Bentyl, thank you so much for telling me that there is something out there which helps you with that. I need to adjust to the US a lot still and you guys have been a huge help with this.

It makes me feel bad that for example we plan something and I'm always spoiling the fun by saying: I cannot do that. Or: I cannot eat that... Like I said I feel very burdensome. I am on some cortisone and mesalazine so it's sort of under control. But what often brings tears in my eyes is that this disease is chronic and I have to deal with this my whole life. I'm not ready for surgery. I'm afraid what the future brings. What if the doctor is taking me off of some drugs which have been helping? What if there is nothing left to try.

Conquer UC, what you describe is exactly how I feel alot of times.

Michelejc, sending someone out the door is not as easy. Sure I could have told my mom to divorce my jerky stepfather. Or I could have moved out with no money, being sick and unemployed... but I doubt it would have worked out well. I avoided him most of the time.

Sorry, today I'm really whiny but

imagardener2 said...
so come here and be supported.

I really appreciate this.

imagardener2 said...
Bentyl comes in 10mg and 20mg. Over the years it's come in handy although I use it rarely. What I like about it is it just seems to work on the gut spasms and doesn't make you loopy like some painkillers do. I've never had any bad reactions to it like constipation, etc. Think of it like Midol for your gut Call your GI and get an Rx script, it's very inexpensive even if you have to pay like I do.

I'll ask my GI about this. I already priced it on with my health insurance and it's really affordable.

imagardener2 said...

Everybody has days that they feel sorry for themselves, with good reason. Everyone in a flare that they can't see an end to fears that it will always be like this. Here's a weird "good thing": UC people have the option of surgery to "cure" their disease. It may not be the best "good thing" but it's true. Ask someone with Crohn's if they would trade places with you, I think they would in a heartbeat.

You're right. Thanks for your kind words.

pb4, i feel the same! if someone doesn't like my "cramp" face, then they can leave me the hell alone. most of family is very supportive of me when i am sick and they understand that i get frequent cramps and can't talk. it's the people who touch me when i'm not feeling well that annoys me most. i hate being touched and some people think it's a sign of being nice.

i honestly wouldn't stress about this andrina. it's their problem and attitude, not you. unless they have the disease, they will never know how painful and how much you feel like crap. that's why it's tough because we physically look okay on the outside and our insides just hate us.

i also just started Bentyl and it seems to calm my cramps a smidgen. not much, but a small lessening is better than none. it only costs me $4 at the pharmacy because they said it's part of the "200 most prescribed meds." only reaction is that it has a strong sedative effect. i take it twice a day so i'm basically napping all the time.

Wow, see how one question can lead to more information and sharing...

I totally didn't realise your family was that offensive and unsupportive. It's not the friends, it's that you're being oppressed and abused verbally and emotionally at the core...your self confidence is .

Others have gone through this on the forum...it's heart wrenching.

Absolutely find what you can do for yourself to function...and that means meds first. Food intake secondly for symptom comfort.

Rectal meds..can't express enough how helpful they are.

Do you have siblings?

Everyone has given you awesome suggestions, it'll take time for it to get figured out.
Basically, most people find it difficult to be sympathetic, empathetic or even somewhat understanding when it comes to chronic illness. It disrupts THEIR lives. I also find that if someone isn't feeling/doing well...others find them as weak, incapable and not doing enough to help themselves. Perception is everything.

If you find the courage to confront your mom and ask her in a calm and confident way why she acts and says the things she does...maybe you'll get the insight from her perspective. Try not to say anything that makes you seem weak at that point.
Most people act out what they cannot say.....and the easiest target to take the hit just might be you at this point.

If you can suggest to go for counselling with your mom, that would be a good start.

You have some control of many outcomes, especially since you have to live with your mom at this point. Can it be so that another bathroom can be put into the basement so that you don't have to interfere with the family?

I know how you feel to a point. When I was 21, married the first time, living at my mom's between moves. Unfortunately, my lung collapsed and I needed major surgery and was in the hospital for a month.

Recovery was difficult and painful. One night at 3 in the morning, I decided to have a hot bath to ease the pain. I couldn't get out of the tub. My husband was sleeping in our basement room, and I called for my mom a few times. She came flying into the bathroom, grabbed me by the hair and flung me around in the tub. Her drunken hatred fueled anger was free-flowing. I was screaming, in shock and agonising pain with no way to defend myself. of course my husband and brother heard, ran up and threw her out of the bathroom.

We never did talk about that incident...ever!
My recovery continued with the help of pain killers and valium, and functioning at night when everyone else was asleep.


Talk!

q

i normally have a calm face when I flare. But I've built up that poker face over the years. Being a sick kids does that.

Just tell them you're sick. If they don't understand then that's their problem, not yours.

Andrina said...
But what often brings tears in my eyes is that this disease is chronic and I have to deal with this my whole life. .

.

You won't have to deal with this for the rest of your life. It might go in remission forever or they might find a cure. I don't expect you to feel the way you feel for the rest of your life, that is ridiculous.

you mean the point? It's never about the immediate issue or event. I know the underlying reasons for her drinking/rage...and while my mom was in the caregiving field, her personal life and subsequent coping strategies sucked.

It's never just one thing, and people with lots of issues don't want to see or deal with someone weak and out of control.

It's not right, it's not fair...talking might have helped instead of our dysfunctional destructive ways of coping.

And...just to add to my coping perspective...I wished for my other lung to collapse (which had the potential because of the blebs on it as well) so that I would be back in the hospital. Being drugged and imobile made it all easier to cope.

q