The connection between stress and symptoms

[OllieR]

I am having a problem, and an on-going argument I suppose, with many people in my life as of late. I hear a lot that even if I do indeed have a very real disease that is causing very real problems, there is some short coming of mine that is keeping my body from healing from it. I even let myself be talked into going to therapy over this, and if you read my other post you know that did not end well for me.

But, despite the unhappily ever after, the thought seems to linger in the mind of my parents and medical practitioners. Typical questions/comments:

Do you think your IC is bad because you are not happy enough?
I think your IC would be better if you eliminated the stress in your life (like all of it; or almost all at least).
Why can't you just forget the IC and do normal activities? (and similarly...)
You focus too much on IC. If you stopped focusing on it you may forget you have it.
Do you really think you should keep looking into more treatment? Maybe you just need more distractions.
If you truly knew how to relax or do self hypnosis, you would not feel pain from your IC.
You weren't this sick before. How is it that your body could heal before and not now?
Do you think that if you didn't do x,y,z and started to do a,b,c that the IC would improve on its own?
Don't you think, that by planning ahead for doctor appointments, or attempting to treat symptoms when they are mild is implanting the idea in yourself that the IC is destined to become worst (they are talking about self-fulfilling prophecy)? If you just left everything alone, I think you will find that it will not bother you so much.
WHY CAN'T YOU JUST RELAX?!?!!!!

Anyways, I could go on and on. Feel free to reply with other cooky questions people have thrown at you because I would love to not feel all alone.

The worst part is that it's really messing with my head! I find myself thinking of my flaws, short comings, and mistakes wondering if I did something better, stopped certain habits, or just let myself be happier that the IC would stop bothering me or even go away. Maybe if I spent more time thinking healing thoughts my body would tackle the IC and cure it on its own (I've been told this is possible). I tend to think of what I must have done wrong. Then I get sad at what I've done wrong and then I get frustrated that I'm getting sad instead of happy!!! AAAAAHHHHHHHHHHHH!!!! Today my mom asked some of these questions and I couldn't take it any more. Has anyone else seen their IC go away by finding more "peace"? What if I can't "will" it away? I'm scared I'll never get real treatment again unless I become a better person.

[kadi]

Yeah, I've heard all of those. Didn't like hearing them either. Mostly they came from people who've only experienced acute health problems (a cold, a broken arm, things that heal), but not chronic ones. When I'm feeling generous, I think, "Oh, they don't get it." and I'm cautious with what I share with them. When I'm not feeling well, it takes everything in me not to say sarcastic things back, and it's best for me to stay away from them. Over time, I've gradually shed those kind of people and I have many more friends in my life who understand.

I recently left a very stressful, sometimes violent job, and everyone is asking me, "Isn't your IC better without it?" Not yet, but I do live in hope! If it happens, I'll let y'all know.

[Carolyn M]

Hi OllieR~
I'm so sorry to hear your family doesn't get IT/IC. My Mom has always been my best friend, we share our secrets and I can't remember a day I have not spoken with her at least once if not more. My Mother has always been one of the most possitive role models in my life and has always, always had a zest for life. When she was diagnosed with IC, our new possition was to do everything right and get better!!! Nothing has changed and she is always in tremendous pain, were still trying to narrow that down. I also think that it's okay to have down days, it helps you pick yourself back up and try again, I guess that's the one thing I have learned about IC as an outsider, that if it's not getting better, you keep going and keep trying until something gives. Far be it from me to tell my Mom what to do when I can not even imagine her pain, but to know who she is as a woman/how she was before, I know that IC is VERY real. If I could get her out of pain, I would! What I can give her is the support that she so much deserves and help to get through this terrible disease. She has just had the Platinum ALCAT testing done and were waiting for results and then maybe we can narrow down inflamation triggers. Don't ever think that you did something wrong to end up where you are! My Mom always did the right thing and read her bible everyday (we do a lot of praying) and she still got IC. It's so important to have family support since you can't just get rid of them, but when I'm having moments of trying to understand, I always come here and I always get the answers. Try to hang in there girl and don't let them get you down, you have enough going on!! Oh....and it's NOT your fault! Carolyn

[skybluesoul]

My first reaction to your post is that I would punch someone in the face if they said anything like that to me! Especially the one about doing normal activities and "forgetting" about it. I don't share details of my IC with many people, and as I read your post I'm reminded of why. I feel very fortunate to have the support and understanding of my immediate family and close friends. Though they may not truly understand what I go through, they don't pressure me into doing things when I'm in pain or on the toilet every 5 minutes.

Stress does of course contribute to our symptoms, but you can't wish this away. None of us would have IC if that was the case! There's no shame in going to therapy, but if you feel it's not helping, then it should be your decision to stop. Seek treatment until you have relief and can enjoy life more. As Carolyn said, this condition is in no way your fault.

[songbird7]

I am having a problem,
Do you think your IC is bad because you are not happy enough?
I think your IC would be better if you eliminated the stress in your life (like all of it; or almost all at least).
Why can't you just forget the IC and do normal activities? (and similarly...)
You focus too much on IC. If you stopped focusing on it you may forget you have it.
hen they are mild is implanting the idea in yourself that the IC is destined to become worst (they are talking about self-fulfilling prophecy)? If you just left everything alone, I think you will find that it will not bother you so much.
WHY CAN'T YOU JUST RELAX?!?!!!!

Anyways, I could go on and on. Feel free to reply with other cooky questions people have thrown at you because I would love to not feel all alone.

The worst part is that it's really messing with my head! I find myself thinking of my flaws, short comings, and mistakes wondering if I did something better, stopped certain habits, or just let myself be happier that the IC would stop bothering me or even go away. :

I've had all these things said to me. My sons said "Oh mom, just think more positive and it will be gone." Years later they understand. The problem lies with these people not yourself though I've had poor self esteem and am doing better. I can tell you are a wonderful person and God bless you and everyone here. May we find a cure in our lifetimes. I find stress does bother the IC. Avoid discussing it with people who don't understand. I think they are frustrated at your suffering and don't understand what it feels like to have pain/pressure. All the best.

[OllieR]

Hey! Whew! I was hearing those things so much I was starting to worry there really *was* something wrong with me and I couldn't heal. I do believe all these things help, like many of you have mentioned, but it's not a cure. When I wrote this post I was in therapy and felt like such a failure. I was picked apart until every single little flaw was pointed out. I was soooo sad. Then I remembered that in the Bible, some of God's greatest disciples suffered.

Paul said:
To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
~2 Corinthians 12:7-9.

This brought me comfort, maybe it can help others reading this post as well. Although, I've probably pleaded more like 300 times for God to take away my IC haha!

Thanks for the enouragment and reminding me I'm not crazy and there is, indeed, nothing wrong with me, nor am I neccessarily a horrible person!

[Eline]

Hi Ollie,

Sorry you have to endure those reactions! And good to see you find consolation in faith. I'm not diagnosed yet, but here are some answers you could give (if only in your head), in an order from polite and educating to not-so-polite, depending on how well-meaning they are:

'Thank you, but IC is a serious condition. I have wounds in my bladder that give me chronic and intense pain. Reducing stress will not make those wounds disappear. Relaxing will not make this amount of pain go away either.'

Dismissively: 'Thank you, I'll discuss my treatment with my urologist.'

'The pain and quality of life for people in my condition can be compared to what people with cancer or end-stage renal failure experience. Clearly, relaxing will not be enough.'

Smiling warmly: 'Wouldn't it be great if that would help? Tenthousands of women all over America/Europe could stop suffering... If only!'

'Well, since this conversation is causing a lot of stress for me, let's end it right here.'

Very sarcastically: 'Oh... Oh! Right! Relaxing... if only I would have thought of that myself.'

Not to be said out loud: 'How about I stab you with a knife several times and you tell me how focusing on something else is working for you?'

[ICNDonna]

I think we've all heard hurtful comments. I like the one that suggested that if I would see a different doctor, I could be cured. I even had a nurse practitioner at my uro's office suggest my IC was brought on by the stress over my shoulder surgery in April --- I did let her know that I've had IC for 36 years! I like my new uro, but will never under any circumstances accept another appointment with that NP.

In most instances, I simply ignore stupid comments --- and change the subject --- it's better than doing someone physical harm (although if I were to go the harm route, I could suggest relaxing to ease the pain.)

Warm hugs,
Donna

[honeymuffin]

OllieR, I totally sympathize. I kept hearing these comments constantly from family and friends for six months. People wanted to send me to all sorts of positive energy therapies and alternative healers. A psychologist friend of mine wanted to do an "intervention" and said my symptoms are just a physical manifestation of all emotions I'm bottling up and that the problem lies in the fact and that I've become too isolated and asocial since I moved to the US. Others blamed work stress. Even my darling husband who's my biggest supporter was convinced that I stress too much over the well-being of my cats (I view them as my babies) which aggrevates my IC. I fought all these notions vehemently and kept telling people I was not unhappy or stressed out damn it! (and got more stressed out and unhappy trying to explain myself). But then something happened. I went back home for a three week vacation and within a few days of being there poof!, I was symptom free. My frequency went to about 6 times a day like a normal person, my pain was gone, and I enjoyed everything from tomato sauce to strawberries and chocolate again. I was out and about the whole time, saw friends, did activities, and felt like a normal person again. Of course I got a million I told you so's, but I didn't care. I reluctantly now agree that maybe there was something to all that. I do believe that what was stressing me out most was IC itself. I was stuck in this rut where I would take my meds, do the diet, deny myself all the foods I used to enjoy, not go out to resturants and bars with friends, avoid sex with my husband, and patiently wait to be rewarded for my good behavior and feel better. When that didn't happen, I would get depressed and angry. I was stuck in this "sick person" psychology and wasn't living my life like I was before. I don't know what initially triggered it, but just feeling better for a while and getting out of that vicious cycle most importantly gave me HOPE, which I believe made all the difference. Now it is possible that the trigger was just Elmiron starting to work after a few months and the DMSO's I completed recently as opposed to anything psychological, but I can tell you at least for the time being I do feel healthier and happier. I force myself to go out of the house and do things even when I don't feel like it. I take walks all the time to balance the fact that I'm sitting in my arse in an office all day. If I feel pain or frequency, I distract myself rather than focusing on it and feeling defeated that it happened again. I'm calling friends and returning to social life, I'm going out to lunches again with coworkers, if I'm craving a glass or wine or some zesty food I just have some and don't feel guility, and I'm enjoying sex again. I've changed my mentality to "if I feel pain as a result of this, oh well, it was worth it". Nothing's worse than the disabled person I allowed myself to become few months ago. I tell myself when the flares happen they will eventually pass and I'll feel ok again, that throughout my life they'll just come and go.

I don't know if any of this is applicable to you as we are all different, but don't give up hope! It's not really about being a better person, but about being at peace with yourself. Wishing you (and all of us) all the best.

[Calinda]

Sorry

I'm sorry you've had all those hurtful things said to you. It is hard when you get bombarded like that. Alot of people are insensitive. Most people I know don't even want to hear what IC is, so I don't bother telling them. I just bring my own food when I'm with other people. It takes an amazing person to really listen and care. Alot of people do have a great support system. Some of us don't yet--that's why this site is so nice. I actually have another more socially alienating illness Multiple Chemical Sensitivity so that already has people put off--so I dare not bring up the IC. The MCS is hard enough to semi explain. However, please don't think it's something wrong with you.
I find that having these illnesses has really taught me not to judge other people and whatever they may have wrong with them. I feel like if they say it and feel it then it is true. I would trust that. We live in a critical world even the news channels banter endlessly questioning this and that for hours.
It does help us who are living through it to gain more compassion for other people.
As far as stress is concerned--we are all stressed out from time to time. You can't really totally control that. I'm sure it has some affect on our health, but I doubt it actually causes this illness. So don't think you gave it to yourself. I read an article about stress once and it said that some amount of stress is healthy.
Not to blab on endlessly, but I think that when you have a chronic illness one of the hardest things is to accept that you have it. That means accepting all of the ramifications, that other people will not be understanding and at times cruel to us. In other words the whole entire picture of the illness. That's why I think a person has ups and downs, when you feel like you are handling it fine, and then other times you want to scream in a closet.
I hope the best for you--and it may take your family time to be more understanding towards you. Sometimes we get frustrated when we want kindness and we don't get it, especially from people closest to us. We tend to have expectations from them, so it really hurts when they don't meet those. Hang in there and remember you didin't cause this.

[Sawwie]

I went to my GP today and she said 'if you get a job you'll probably feel a lot better'. Apparently being unemployed is causing my symptoms... hmmmm

But I sympathise with you entirely, I try to 'relax' and go to my happy place.. but I get bored.