Someone told me some very disturbing news today about a person who killed herself bc she had IC and other chronic health problems.
I dont know more than this, but, I do know how heavy-hearted it feels to know that someone ended her life because she felt that she could never be healthy again. In thinking on this, I am reminded of how desperate a person can be to be truly heard when suffering with chronic illness. And, how many accusations of "this is in your head" kind of mentality faces them. When I listen to stories about anyone, but especially a young person ending his or her own life I think to myself--did anyone listen?
And, even if someone IS listening, often, they dont know what to do with this information. With interstitial cystitis and other related conditions, the problems are indeed mind/body, but not in the way that is often implied. And, it is only when someone can take a person and listen to their journey towards unhealthiness that their disease can be truly understood and addressed.
I myself was once unheard, and struggled towards wellness. I understand what it is to not be taken seriously. I am deeply sorry to hear about the loss of this woman that I didnt even know. I hope each of you feel listened to, and if you know someone who needs an ear--lend one. You never know, you could be saving a life!
This surely is very tragic and so sad. It is so scary when you have so many symptoms that the Doctors can't help you with because there is so little awareness about this condition. It is a very lonely disease. When I remember back to this past January and February when I was seeing Doctors what seemed like daily for a new symptom I thought this was going to be my life for now on. This was devastating to me. I thank God for finding Matia and all of you who participate in this site. I still do have my dark moments and also feel fear that some of my symptoms won't go away but I am more able to cope and get a grip faster. I take every opportunity to talk to people about this condition and what I am doing to treat my condition. Maybe by doing this others will get help faster because they will have hope. Hope goes along way. Kristeen
I am so sad for her and her family
So sad to hear of this news. My aunt is a nurse and since I have had IC, it has put her own profession in a whole new light. She said she would constantly hear the doctor she worked for put patients down and imply that they had mental issues when they would complain of random ailments or things that didn't seem to connect. I think all of us on Matia's website can relate to this. I sure can. When I complained to my urogynecologist about pain in my kidney, she said it was because that was the side I held my daughter on. When I went for physical therapy for IC, I was asked about my state of mind and level of happiness. I felt like this was being used against me as if I was sad about my physical state was something bad. I would be more concerned about someone's mental state if they were elated/excited/happy about being ill. My heart and prayers go out to this girl and her family. It makes me reflect about how fortunate I was to get IC before my son. I can't imagine him or my daughter going through that level of isolation. They are somewhat isolated now because of the limited diet, but I can't imagine how much more isolated they would be if they were in constant pain...
I know when my ic was bad, I developed horrible bloating--I couldn't yawn without choking--and my sides ached terribly. I finally went to the er, thinking they would take a urine or blood sample or something--the female doctor stood over the bed and said, you have pain all over? Sounds like depression. You know you really have to start getting up every morning and dealing with this bladder disease you say you have. I was devastated and confused. She gave me vicodin and sent me home. Well, the symptoms got so bad I went back and a different dr gave me x rays--turns out I had a kidney stone!! on top of the ic that was causing all that aching. I was so mad at that doctor!!
I have had other people make comments to me as well--how they have this or that ailment or back problem and still work, so why can't I? These aren't minor ailments either, one guy has MS! All I know is, ic is in a class all by itself.
Hi I am not yet a patient of Matia, but i am becoming more convinced that this is the road to travel. Having read Matia's blog I can associate with what she has written.I have in my darkest moments, my moments of intense pain felt like ending my life due to an unsympathetic partner, unsympathetic parents and unsympathetic doctors. I couldn't even imagine another day living with this, yet alone another 60 years. The one thing that prevented me from this was knowing that I wouldn't be able to rest in the next life knowing that my partner would dress my sons in terrible clothes. You may think that it is shallow, but its whats kept me going. I work 2 weekends out of the month and you should see some of the combinations my children end up wearing. I have never laughed so much. I am still stuck in my own world of silence however. I hide the website when my partner is around and even drink hot chocolates and eat cake with my mother so I don't endure her insensitivity. This website however is becoming my voice. Thank you.
When I read someone's feelings and realize that I have touched them without even having met them, it makes me feel elated to do what I do.
As time continues, I try to improve upon my own techniques to make this process more efficient, fluid, and multi-faceted. But, sometimes, I might only be a stepping stone, and that is OK too. All I want is to illuminate a path to wellness, however that needs to happen.
Greta, hearing your thoughts about your son's clothing creates this bitter sweet humor. Whatever part of it allows you to laugh, do--bc this will help get you through! And, I hope we do meet each other one day soon.
I am so glad you ahve found some solace in this website!
You will get thru this, your great sense of humour will help u survive.
Your partner, parents and children are lucky to have you. I urge you not to drink hot choc and eat cake with yr mother - don't let her insensitivity stop u making progress. Starting Matia's diet is an important first step. Don't let anyone block yr path of progress. Just say "Its my decision" or something like that, if challenged on diet. My mum was always criticizing me about all kinds of stuff until one day I said "Its easy to criticize, isn't it" and it stopped her in her tracks - for a while, at least, now I don't waste my energy on spending time with anyone who is unsympathetic - I need all my energy for getting better and staying positive.
I only see people who supplement my energy and help me stay positive, sometimes it makes u feel ruthless but with IC you have to put yourself first.
I agree this website is really helpful and quite comforting as IC is such an isolating illness.