IC and Self Esteem, Need Feedback

[songbird7]

Please let me here from you. This is like a survey. How does IC effect your self esteem. Does it effect it? If so how do you handle it?
With love,

[Janie Miranda]

I've only had acute IC symptoms since December 2004 but realize now that a lot of pelvic pain I had attributed to a large fibroid was probably really bladder pain. I've been dealing with this off and on for years. I had found that I ate "comfort" foods when I felt bad so I had some big weight fluctuations. My self esteen definitely suffers a bit when I'm at the higher end of my weight gains.

Other than that - I haven't had too many self esteem issues. I think that is because my IC is probably more on the moderate to mild side so I haven't had to deal with a lot of doctors for narcotics or anything. I could see how my self esteem would suffer if my pain was worse and I had a difficult time with getting doctors to believe me and treat my pain.

[VickiB]

I'd have to say the way IC has affected my self esteem most is in the area of dependability. When I say I'm going to do something or be somewhere, it's been important to me that I followed through. I hate to let people down who are counting on me. IC, and it's unpredictability, has certainly affected that personal characteristic that I once took pride in.

Vicki

[mayray518]

IC definitely affects self esteem. How can you have self esteem when you lose your job cant participate in normal activities, etc. When my IC was at its worst I became a loner. No one understood the pain I was in because I looked "normal." This was before the internet and I could log on to wonderful sites like this one. I have been in remission for 5 years but feel I will have to explain IC my whole life. Job hunting was a nightmare. Everyone said "Oh thats awful" when you explain the gap in your resume but it definitely affecting me getting hired. I recently was in a University of Maryland study and I hope they can find out what causes IC in the near future. No one will have to go through the hell we have been through.

[kadi]

I think IC has both lowered & raised my self esteem.

The down side is in my "outside life". I don't feel very attractive because of the 30 pound weight gain & overall lack of fitness. I hate having to cancel plans & have felt unreliable at times. I'm not very confident about dating & relationships because I feel like I'm coming with a lot of baggage I didn't have before. Before IC I almost automatically got any job or promotion I asked for because I was good at my job & confident. I recently asked for a promotion/different job at work and instead of my boss saying "Great! Glad you're willing to ask for & take the assignment", he said, "How's your health? I have to take that into account too." He's called me in for a meeting this Wed & I'm assuming it's about the position. (He never calls me in.) Whatever happens with that, it definitely shook my self-image and my confidence about my ability to succeed & be perceived well at work.

On the positive side, I've learned to have a better work/life balance. I am more assertive. I definitely stick up for myself more, especially when it comes to medical personnel. The initial stages of IC were really awful and the treatment I received from some of the first doctors & nurses I saw was appalling. Friends were horrified at things that were said to me, and thank God I had friends who were doctors who could tell me that what was happening wasn't right. I've since learned to select my doctors and walk away from those who are disrespectful, rude, arrogant, or uninformed. I've learned that if I stay fact-based & don't panic, I can communicate very well & most of the doctors I now see have really supported me & told me that they think I'm handling IC very well. That has helped me rebuild a bit.
I also say the serenity prayer a lot and try to focus on what I can do, not what I can't. (I'm not perfect & still get quite frustrated & upset from time to time, but this is what I try to do & it does help)

It is definitely an uphill battle living with IC and though I can sometimes think of how I've learned & become a better person through it, I wouldn't choose IC or wish it on my worst enemy.

[Debgail]

:)good job Kadi...made me think...yep I too feel my self esteem has been affected by weight gain of 35 lbs from the elavil( would not go off of however) . The other thing that has affected me is having to take elavil,atarax,elmiron and vicodin. Sometimes when I take pain pills I feel weak,which is really ridiculous..I know...as if I should have to suffer thru ic with the stoacism of an action figure..ha! It is hard every time I take a pill I am reminded what it is for ...sigh...

The good thing is tho...dealing with chronic illness does make one stronger, more compassionate of others and much more in tune with ones true self. I have learned to listen to my own voice ...because I have been humbled by ic ..and things dont come as easily as they used to...so I have learned to really enjoy and savor the things that I can do and try to forgive myself for the things that I cannot...since ic is not my fault.At first I thought it was.

I am more than my weight. I am more than ic. I am a good loving person..so I try to remember that ...it gets me through.

Love, Debbie

[pottywoman]

My self esteem is in the toilet. I've tried to get it back but can't. I just feel like I have no purpose in life anymore.

[Julie B]

I can mimic Kadi to the letter (even the 30 # lol) I LIKE myself a lot better all around since IC...........but....................the older you get the more forgiving you get of your body too...................

Songbird.............how has it affected you? Gentle loving hugs to you...........

[ICNDonna]

Actually I think IC has made me a better person. I absolutely know I am more compassionate --- I am able to understand and communicate with friends who are ill.

Donna

[K9wife]

Reading the above, most of our self-esteem issues revolve around the weight we've gained. (Mine included!) With every paper you pick up, every TV show that's on,etc, the world hears how awful it is that we are "all overweight in America" it only drives home the feeling of worthlessness to those of us with no choice even more, don't you all think? When this whole drive for physical perfection and "Weight loss challenges" started on TV, I predicted an outbreak of teenage anorexia. Little did I know that the whole thing would hit so close to home for all of us Icers too....sad to think that the world sees our value only from the scale's point of view! Do you know that the Amish have no mirrors and no scales in their homes? hmmm....I think I'll sign up! LOL P.S. Last week, I worked with 2 new teens with eating disorders....sigh....sometimes it stinks to be right. At least on this site, nobody judges you for how much you weigh! That raises my self-esteem a notch or two!

[JenG]

I agree with the weight gain issue. I feel the change in myself as I have put on 30 lbs due to the drugs and the lack of activity. This culture continually tears down the self esteem of anyone who doesn't conform to the "perfect body". I actually heard my 11 yr old say this weekend that she was worried that she looked fat in her bathing suit! She is so beautiful! She has muscles and curves in all the right places and not an ounce of fat on her - but she is not the skeleton that she sees all over the media! :mad:

Also I think that it is hard to have self-esteem when IC has led me to quit my job and not participate in a lot of the activities I once enjoyed. Even though my husband has been supportive I do feel he is unhappy that I do not contribute to the family income.

On the brighter side :) IC has made me realize what is truly important in life and has brought me more compassion. I feel I have more courage than I previously thought I had! We all do!

[songbird7]

I don't have the weight gain thing but I do feel badly when my activities need to be so restricted. I am beginning to realize that I don't have to keep up with anyone and find my own pace. Sometimes people don't understand and I feel sad. I am beginning to look at myself from the inside instead of identifying with my body and what I can do or not do and I like the person I see better. Problems come when people don't understand my limitations or say I talk too much about IC, which I don't.
((((((((((gentle hugs to all of you))))))))))

[massagedoula]

I would agree with Donna about the being able to better sympathize with friends, family, and others with chronic illnesses. My father is battling prostate cancer and I really feel that since my journey with IC started, I can understand him better. It also helps me put my priorities in order....I can say no to things that are not that important to me now, rather than what I did in the past, which was do them because I felt that I had to.

[SrMaggie]

Weight is my self esteem issue. I am short, 4'11" and even a little overweight looks like a lot. However, there is a big gain. I would love to lose about 40lbs. My energy level though is low as well as momentum. I have a plan for the summer to use the treadmill first thing in the morning so that I'm not sore, yet. Hasn't happened - but I think I can handle it tomorrow. When I drink (water, milk), I usually need to eat something, too, or it feels like the liquid goes straight through. It may be a fantasy on my part, but if I have something in my stomach, it seems I don't have to run to the RR so much.
I do feel that I am more compassionate. Especially reading what some are going through. My jaw just drops when I read the tragedies.
Maybe the Footprints in the Sand story would help me know more where my strength is.

[mags]

IC definitely affects self esteem. How can you have self esteem when you lose your job cant participate in normal activities, etc. When my IC was at its worst I became a loner. No one understood the pain I was in because I looked "normal." This was before the internet and I could log on to wonderful sites like this one. I have been in remission for 5 years but feel I will have to explain IC my whole life. Job hunting was a nightmare. Everyone said "Oh thats awful" when you explain the gap in your resume but it definitely affecting me getting hired. I recently was in a University of Maryland study and I hope they can find out what causes IC in the near future. No one will have to go through the hell we have been through.

What did you take that caused you to finally go into remission?

[KChideaway]

Wow...what a question...self esteem and IC.....I can definitely say it has affected my self esteem, my self image and made me self consious....but only in a visual way. I'll explain.

I have always been petite. 5'3" and 98 pounds since highschool. Went through two pregnancies, tubal ligation and hysterectomy all by the age of 24. Was proud to be 30 something and still able to wear a size 3 with a flat tummy! Then.....all h*ll broke loose.....
I had such pain, intense pain, that after an 18 hour flare I went toER ad then the next day to my reg. doc and said something had to change or I would go crazy. He (my regular doc) treated me with urispas and told me to continue the pyridium that the ER doc gave me. I was so happy he didn't think I was nuts like the ER doc did the night before......
But it wasn't enough and I actually experienced what felt like menstrual cramps...considering that couldn't happen anymore he sent me upstairs to the urologist and told me it sounded like I had IC. I went to the new doc, began Ditropan XL, and had an in office "uro-dynamics" test done. When he could visably see the lesions, and then he scheduled me for a urethral dialation (he couldn't cath me due to so much scar tissue) and I had a bladder distention the following week. My capacity was so bad, he said he had never seen it so bad. After I had emptied to the best of my ability, the ultrasound revealed that I only emptied about 6 ounces.
Nonetheless, my self esteem and my body image has really taken a hit. Since I was diagnosed in December of 2004 I have gone from about 96-98 pounds to 119 as of this morning!!!
NONE of my pants fit, NONE of my underwear fit, NONE of my shorts fit, NONE of my shirts cover me without my looking pregnant, my bathing suit hardly is attractive and I see each and every bloated, dimpled part of my body. I know that to some of you, 119 isn't bad, but when you put on 22+ pounds in less than 6 months I am sure you can relate. I haven't suffered any depression like some do with the lack of self esteem, but I am so self consious about my body!!

Hoping I don't gain anymore weight...... :bonk:
Karen in Vegas

[SandyRN]

I'm having a lot of self esteem problems lately. I was dx'd with IC about a year ago with a cysto/hydro but I handled it better then than I do now I think. I want to go back to work, but don't really know how I can handle it, even working only one 8 hour shift a week. I feel really down, and the pain and symptoms I'm having are much worse lately. It's depressing....I feel like a pest to those around me...sometimes I just feel like a mutant because I have so many things wrong with me compared to those "normal" folks out there. Most people just don't understand, and when I explain to them what's wrong with me I get pity. Pity is not what I want....not sure what I DO want, but it's not pity.

As far as weight goes I have lost a lot, and that is a worry to my doctor.....I'm happy that I now fit into a size 8 again, but I shouldn't have lost the weight so quickly.

I CAN say that if I get rehired as a RN in a hospital again I will be much more empathetic/sympathetic to those in pain and I think it will make me a much better nurse.....at least something good will come out of all of this!

Sandy