How many times have you said this to a doctor or practitioner? How many times have you
been shot down by a sharp tongue without an understanding of your position?
It is really sad that most of the medical profession looks upon people having IC as
"OCD" or "neurotic" as one patient put it refusing to acknowledge her feelings.
No doubt when you have this condition, you become "crazy", but who wouldn't be
crazy with the symptoms that this condition causes? But, just because you became
a little crazy since you became ill does not mean you were in the first place!
This is the climate of belief over this condition in Western medicine today. And,
perhaps among some who practice alternative medicine as well. This is sad,
because this tells me that those people having this kind of belief system do not really
understand the condition.
It is true that any kind of person can get any disease including IC, a big person, a little person, a fat person, a skinny person, old, young, nice, old, depressed or happy, and even a crazy person. But all crazy people do not get IC, IC just makes you feel a little "crazy".
Comments
Hallelujah!
Matia -- Thank you for writing this... for understanding but beyond that for validating our frustrations with having to "prove" that IC is real... that our suffering is real. I really connected with this sentiment because it happens to have been swirling around in my head all this week. With doctors, it is inexcusable to deny a patient's suffering (or the equivalent, writing it off as "you're just too stressed"). What’s most infuriating is that even if the IC itself didn't make you feel a bit batty, going through the "doctor rounds" is sure to take you there because you are MADE TO FEEL crazy, made to doubt yourself and your body’s signals at a time when you are most vulnerable, and that is a sad, sad thing. While I'm not screaming "sexist," I do believe the gender differential of mostly male doctors / mostly female IC patients is a factor. But also, most doctors operate within such a rigid belief system that acknowledging any degree of the Eastern approach would greatly threaten if not shatter their paradigm.
BUT even doctors' resistance I can understand more than when it's friends and family, the loved ones you depend on for support (esp. when facing IC or any other health challenge). And yet I'm learning that IC is as much an interpersonal challenge as a physical/mental/emotional one. It's a recurrent theme with IC'ers how many friends/family do not fully accept or support those of us in pain because they equate sickness with weakness, because they don't understand it all or because they don’t believe it's a "real disease" -- whatever that even means! I guess it's a common thing with humanity, as history shows a long list of now-accepted afflictions that people were once blamed for causing or fabricating. But even if I tell you that I have a disease you've never heard of or know little about, that shouldn't take one ounce away from the fact that I am still suffering!! Would you refuse to breathe air until someone could show it to your naked eye and prove it's there? This isn't something we're exaggerating or making up just for the heck of it. I mean, think about it -- who would? Who in their right mind would choose a rare, “incurable” condition that makes life revolve around a toilet of all things… choose to run through a gamut of insensitive and useless doctors and testing… choose to spend away their savings trying to get answers… if there wasn't real suffering going on? If this wasn’t real, we’d be out there spending every moment enjoying our lives. Bottom line: people are suffering and that alone should be enough. The lack of our loved ones' support is sometimes just as devastating as the disease itself. We don't need a parade of sympathy. We just need to be believed, to be listened to, to be supported, to be loved. It doesn't take much, but it means oh so much.
I've also found that even well-meaning friends/family keep repeatedly asking "How are you feeling?" ... "Better yet?" though I've explained again and again that (at least until I'm healed) this is a chronic, tough condition... it doesn't just disappear in a week like the flu. I bring up this example because when people ask it, I can sense the feeling/expectation behind the words, which is "Please answer yes because I don't know what to do with any other answer"... and they usually don't. They take it as my being pessimistic or they just get quiet and awkward or give some blanket, impersonal response like "Everything's going to be just fine" (which hopefully it will be down the road with Matia's treatment, but right now everything is most certainly not fine… or easy!)
Instead of judging and blaming, though, I'm trying to open my heart to see just how uncomfortable people are with suffering. I’m seeing how much work is left to do around educating those blessed with good health, supporting those in pain/distress and helping patients to assert themselves in these situations. I hate to admit it, but this suffering is teaching me a lot, and I hope I can someday contribute something useful to the mix as a result.
Lisa-Great Post!
Everything you said is so true. I think forgiveness is the appropriate sentiment. People dont mean to be cruel. They just dont understand-worse, they think they do understand. That is the cyclical problem. I try to encourage people to be strong and not discuss the condition with too many friends or family, and not to place any weight on what those family members or friends think because in the end the struggle is a long and lonely one that only each person can travel through. And, whatever choice each person makes for himself or herself-is theirs to make and no approval is required!One more thing--I used to think female docs were much nicer, both in Western and Alternative types of medicine. I later found that not to be the case. And, in some cases, I found them to be worse!
Matia, your response really helped me...
I never considered that not discussing the condition much w/ people could be the healthiest option, or that it even was an option! But your words rang so true, and since I already know I need to work on not putting weight, as you say, on what others say or think, I now see that it may just be best to not 'go there' w/ people, at least not much and not often... esp. as the resultant frustration/stress is just counter-productive to my healing process and staying positive. I see the truth in what you say about IC still being the individual's struggle .... that I can't expect anyone else to really understand and shouldn't waste my precious energies desperately trying to. I also now get that the fact that it's lonely doesn't have to mean I must find all my support in others -- at first I kept it a secret from most but was buckling under the pressure of shouldering everything on my own, so I thought the opposite was true, that it was so dark and lonely that I NEEDED to reach out to others. Of course, reaching out to some degree & having truly supportive people is still important, but from your words I get that I don't have to rely on something EXTERNAL to feel support or courage... that I can (and should) find the reserves within myself ... and that I can grow stronger as a result. Thank you for your further insight!!
seroiusly phenomenal post Lisa/ Matia
I will never forget the way I was treated by the western medical profession. Chronic illness makes people really uncomfortable! Doctors if they know about Ic seem to be ultimately pessimistic and actually kind of strangely cruel about it. I recall a urologist dropping a prelimanry diagnosis on me as though it were a death senstence- Well, you probably have IC and theres no cure just medication to control the syntomns and he was so cold about it. and he just walked out after handing me a scrip for a numbing medication. Why they can get so cruel about it I don't understand it almost like they are digusted by the patient or the condition or maybe thier own inability to help? I recall I had had Ic for a long time- but things escalated terribly for me in april of 08. I had made my appt to see MAtia for a few weeks ahead but I couldn't get to LA just yet- and my IC got incredibly worse all of a sudden. I was very scared and suffering so much. It was this emergency situation and I actually chose not to see a urologist for an actual diagnosis because of the invasive procedure and ended up at the gyno and the general practioner office - in outragous terrible terrible pain and all I wanted was something to control the pain - not a narcotic just a stronger than over the counter pyridium and they refused to give me this- told me I had a UTI- I knew I didn't! the lab work came back negative a few days later! and I had already explained to them that it would be that way. I explained that I had IC but I had no paperwork to prove it but that I needed something for the pain until I could fly out to my specialist in LA for the the IC program she offered. The nurse prationer who saw me- smiled in a patronizing way- oh really? gave me a srcip for an antibiotc and elmiron and said I quote in a sarcastic way "oh your Specialist in LA huh? what is she? a urologist? oh an acupuncurist? Well GOOD Luck with that honey!" She also treated me with the kind of distain tht is reserved for people who are pharmacuetical narcotic addicts. I think they thought I was strung out and didn't beleive me that I was in genuine pain for an acutal medical condition. I had no PROOF of my pain as though we needed to prove anything. I went to my gyno for help. they gave me some scrip for a creme for vulvadynia and I was crying when they did my examination but they didn't seem to notice how swollen my tissues were or anything - I now know it was really bad because the swelling has gone down but they were not really alarmed by that or noticed- it was just -this- we can't really do anything for you kind of attitude now give me $100.00. I remember holding these worthless bull****crumpled up prescriptions in my hand in my parked car and just losing it like totally losing it for 10 minutes straight- like hysterical anger crying and screaming. I remember this overwhelming fear that I would feel that way the rest of my life. It was a month before I could go see Matia and I spent 4 weeks in total agony in body and spirit. this was when my family finally started to support me- they could see how much I was in major trouble and they were willing to support any option that would help even if they didn't understand it or if it was unconventional. Chronic illness makes people feel uncomfortable because it stirs up people's fears of being sick- its very close to our fears of death and mortality - because even though Ic is not fatal-( thats arguable judging by the high suicide rates of Ic-) it is a kind of living death sentence of suffering. I think especially when they see people who are young and sick I think it really messes with their sense of security? most people think of debilating illness as something that happens to older people when our bodies are declining in function not in the supposed prime of life! So yes- it is really incredible what alot of women /men go through in getting diagnosed or treated. I feel very angry when I think of my experiences with western medicine - but I also think okay- even though these people didn't help me and charged me lots of money to not help me and also made me sicker I think and take a deep breath and remember Matia's urge for forgiveness and understanding. IC is so misunderstood. Health is misunderstood. the medical professionals I saw were trying thier best to help me-they did what they thought was the right thing to do- what they had been trained to do. the pradigm is flawed and the system is flawed and the theories are flawed but thier intentions were good. the nurse I saw probably saw 50 people that day. She was stressed out and overworked.I'm sure she sees people who are hypochondriacs all the time but for the people who are sick and need help- they can get looked over and lumped into a easy catogory of generalization. It was eye opening. It taught me to feel compassion for people who are sick and suffering and forgotten. It taught me the value of true health and vitality and how precious it is. I appreciate my life more. I forgive all the doctors who didn't beleive me and who treated me poorly. I have no room in my health and heart for poisonous resentment or anger. Somehow in the calm moments after losing it in the car crying all the anger just condesenced into this energy this decision to heal -I recall this eerieresolve this like iron steel forged conviction like soooo strong -Failure is not an option at all-forget it- forming in my very being that I would get well and that all the naysayers or "its not possible to cure IC " kind of of attitudes had to be silenced. this very very strong determination developed that would give me the strength to do the diet without cheating and to be strong and brave and beleive that I would get better and be one day 110% well in every way. not just better but totally healthy! I'm getting there. Its very hard but very possible. so I guess in some indirect way- the doctors were my impetuos to take full responsibility for my health renewal. Instead of anger I choose to feel gratitude.
Honeybee
Beautiful post! Nothing better than turning negatives into positives! That is what the journey of life is all about I think. It is all about choices and perspective.
Lightbulb moments...
Honeybee, I so appreciate your sharing these insights and some of your experiences, because I didn't take the next leap (duh, Lisa!) to people's discomfort w/ chronic illness/pain being connected with the ultimate fear of our mortality as well as the fear of being helpless/not in control when health problems attack. Moreover, I missed the connection with it being esp. difficult when it's young people, esp. seemingly healthy looking people as is often the case w/ IC.
When most people make comments, even the most misguided or mean, I see that this basic fear is underlying a lot of it, even if it's all subconscious. How scary it must feel on the other end of things, as people always think "It won't happen to me"... but then when it hits closer to home w/ a friend or family member it threatens their false security to be reminded that no matter their current circumstance, so many things can happen outside of their control.
This all makes so much sense! and my forgiveness and openness have expanded even further as I see these are basic human fears we all share. Thank you again for sharing this.
The road less traveled
Honeybee, You have chosen the wise path of the road less traveled. I started on the well troden road of traditional medicine and became worse with each new procedure. Now, I have decided to start on my journey back to health and take the road less traveled. If anyone reading this post is considering invasive instillations or medications, I would advice researching their negative side effects. Talk with people who have taken this path. Then find people who have journeyed back to health and foolow in their footsteps.