Some comments below prompted me to write this blog. There are so many emotional struggles with IC and I think they are all important to understand.
The first and most obvious struggle is quickly and thankfully becoming less and less of a problem-that is, to be believed that something real is wrong. More and more recognition is being given to IC. In the last couple of decades, there was not as much attention or credibility given the condition and people were given heartless suggestions by their doctors regarding their condition- assigning blame and shame to the symptoms. I have heard stories of patients being told they needed to have more sex, smoke cigars, and deal with their anger. I am not suggesting they have no anger or other feelings, but am suggesting that IC is a very real physical problem that needs real treatment. And, addressing any emotional issues should be adjunctive and not primary in treatment.
Among the non-medical community, family members and friends continue to be perplexed by their loved one's ailments, and are often not only not offered support but in some cases are pressured by judgement over their new dietary and lifestyle restrictions. They may not understand why the IC would cause so much oversensitivity or how this could even be. They may not understand why their loved one cannot cheat on their diet-not even once for fear of the painful consequences. Their sexual partner may tire of waiting for their once fulfilled sex life to return. This may lead to hopelessness and depression on top of a situation that already has lead them to such feelings. This of course, is compounded by any accompanying disorders the person with the IC may also have. IC is often accompanied by other chronic and misunderstood conditions such as Chronic Fatigue Syndrome, Vulvadynia, IBS, and Fibromyalgia.
Less commonly, patients with IC have faced other serious conditions such as cancer. But, as we have seen from the posts below, these brave people do exist. It is difficult to understand how much pain one must ace in his or her life.
If we turn back the hands of time with many of these people, we can see a common background is often that they come from mothers who did not nurture them adequately-that did not hug them enough, or tell them how much they were loved, that did not spend enough words building his or her self esteem. This dynamic will often impact the nervous system which then in turn will effect the intestines, leading to poor digestion and constipation. Once the gastrointestinal changes have set in, how the person (usually still very young) handles it will determine what comes next. As time passes, anxiety often occurs and feelings of inadequacy lead to a tendency toward overachievement. Sound familiar? The pain of one's past is not typically left there, but, is carried along side them through their adulthood, continuing to effect their developing IC.
Once the condition or conditions hit all the emotional pain of the past along with the struggle to be heard in the present and the pain of not knowing what will become of the future come descending onto this one person who feels-all alone. It is overwhelming to say the least.
I am not suggesting that this is everyone's path with IC, but, it certainly is a typical depiction of the past and present of many. One can come to this point in his or her life and ask, "why have I been dealt this hand?", or one may embrace this juncture of life as a fork in the road and decide to choose the higher path-the path that involves hope, and positivity, and courage, and realize that this may be an opportunity to make many positive and wonderful changes in life that may have a very significant impact on improving the quality of their own health and the health of their family. In turn the healthier you will change the cycle of the past and the future of your own children. Regardless of the outlook, people with IC face many obstacles-some that cannot be helped, some that, with more understanding perhaps could, but, the one thing that they share without question-they are brave people trying only to recapture what was, what is, and what will be.
Comments
thank you
Matia - thank you for this post. I continue to learn so much from you. The emotional issues that were so powerful for me when I first started treatment are almost completely gone now. I was a bundle of anxiety and turmoil and was also experiencing some of the other chronic conditions listed above. I did not have the support of my family or friends and felt so alone. Looking back, going into treatment was actually my first step towards becoming my own person and pushing for what I needed. And the family and friends who stuck with me through all this now see the positive outcome of my choice. I feel so much better these days, events and people that would have had me coming apart at the seams a few years ago, usually roll off my back. I often remind myself of the positives that this terrible IC condition has brought into my life. I am a much happier, calmer, compassionate person and for the first time in my life I am able to speak up for myself, which is HUGE.
Carol
Terrific post!!
Terrific post!! I read your dissertation where you address these factors but to read it so succinctly here, wow, it's incredible how well I fit the "IC mold." It's just as you said -- completely unnurtured physically/emotionally & abuse >> stomach always in knots as a kid b/c of this >> anxiety >> overachiever syndrome. After much therapeutic work I've seen how it all comes down to unworthiness... because my little child self had no other way to interpret what happened than as me being somehow unworthy of love (or even existing, really). Now, as an adult, I thought I had decent self-esteem, but found that at the core, that deep feeling of unworthiness had never disappeared, and more than just not disappeared, had stealthily seeped into every facet of my life like a silent poison. (And I've since found that soooo many others, not just IC patients or those with health problems, are still carrying around that same 'unworthy' card, or variations on it). If you think of what it is to truly feel unworthy, unloved, that is so HUGE... no wonder it could energetically imprint on an impressionable, vulnerable child and set the course for future emotional/physical problems. I love what a wise person told me about all this: We put on that unworthiness like a coat, and after wearing it long enough it feels as if it's melded to our skin, like it's as much a part of us as our arms or legs. But it's a coat. It's not YOU. It can be taken off.
Also, since you brought up the equally important issue of others not believing or trusting our condition, it made me remember how my husband recently said, "It would be different if you had something that was really known and you could see, not just these invisible, mysterious things that don't show up on any tests and no other doctor knows what's wrong." It's sad, but his words reflect what a lot of others feel but may just be too ashamed to say out loud. Because you can't see it or have it validated by modern medicine, it isn't as real or valid, and/or the cause lies more with you. SUCH a shame. There's a great website on this: http://invisibleillnessweek.com/.... a helpful resource (and gives some great comic relief). I esp like the section on 50 ways to respond to someone who says "But you look so good!"
Love & healing to all.
~Lisa
Carole and Lisa
Thank you both for responding with such openness. It is so incredibly important to shares one's heart with the vulnerability that comes with what is spoken. Life can be so painful, but, there are not many things more alienating than the lacking of self worth, being loved, and not being believed. This is such a deep sense of aloneness and despair. What we are is so dependent upon the people who bring us into this universe and how they nurture us-tiny innocent seeds that need pure water, light, and love. Without that, we wither and die. Learning to find strength and love in one's own heart and to pick up the fragmented pieces of one's life is perhaps one of life's hardest lessons. But, this can be done. I have seen it over and over again. And, what a beautiful flowers emerge from such tainted soil. These are the ingredients that create each of us as we are.
Lucky One
I guess I didn't realize how lucky I am and have always been. I come from the most loving and nuturing family ever. We children were our parents lives and no one ever left the house without a hug, kiss, "I love you" and be careful. We were always told that we could be anyone and anything we wanted.
Since I've had IC (for many years now), my husband and family have been sooo supportive. Tolerating the meal changes, the restrictions on activities, etc. They are comforting and understand of my pain and limitation, and never give up hope that I will improve.
I've always tried to keep my own spirits up by not dwelling on the things I can't do or have, but rather on the wonderful things in life that I do have. Matia, you are one of those wonderful things. Always there for me in the darkest hours day after day, never giving up on me.
Thank you for all your help and support.
Peggy
We should all be so blessed. The world would be a better place in so many ways, not just with IC!
I am having a difficult time
I am having a difficult time wrapping my head around all the emotions I am feeling, feeling so lost and alone with no one to understand. I think my life started off on the wrong foot, learning bad habits from my parents, internalizing emotions. I have dealt with a lot over the years, but have always learned to take things in stride and cope with each new challenge, which has definitely helped shape me into the stubborn give me a challenge and never going to give up attitude. But, unfortunately, years of hiding my emotions has led me to much suffering. It is so hard to walk this path alone when many Dr's have blamed me for avoiding Western treatment stating this is the reason for many of issues rather than truly listening to my symptoms and long history of illness and pain, telling me it is all in my head, and my family being less than supportive always asking "when are you going to see a real Dr?" I feel such anger and sadness that I constantly internalize, and want to please, and have found it is impossible to live life this way and find happiness and health for myself. I have so many emotions about being robbed of health at a very young age, losing my father, having family always questioning and judging me for the path I have chosen. I have a great fear of letting go of what I know and what is comfortable, even though I know change no matter how difficult may be for the better. It's time to let go of my fears and the judgment of others. I am going to take the high road, leave the nay sayers behind, stand up for myself, and find health and happiness. Thank you for this post, no matter how old, it has helped me, so thoughtfully worded!