about this morning. The doctor was actually being very thoughtless. You ARE on the right track and WILL get there. Your body will respond. Sometimes, it takes ages for it to turn around - but it will. This has worked for so many people - why should you be any different? You're not. We all have issues that makes treatment difficult sometimes. Just hang in there - it'll happen. Btw, I recently spoke to a UK ex-patient - it took her four years to heal, but she did it, and is currently expecting her second baby. Everyone thinks that it won't happen for them.  It DOES and WILL happen. 

Hi Lynette,
I'm sorry to hear you're feeling so anxious and panicky this morning.  It sounds like a really unpleasant encounter with this person who, while she's trying to be helpful, really overstepped her boundaries and was disrespectful to you.  But that's her stuff, not yours.  For some reason, she feels the need to tell you that she knows better, and it's too bad that she couldn't just make a suggestion, rather than blaming you for having a different course than what she feels is right. 
             I think it's important to note that you know yourself and your body more than anyone else and that it's your decision about how to care for yourself.  And right now you're choosing to work with Matia.  And there's nothing inherently wrong or right about choosing that or any other form of treatment.  As Matia's last blog post says, there are many ways to treat IC, and her way is one of them that seems far more effective than many others.  This is not to say that her way is the only way to heal, but you don't have to doubt that you're in good hands with her.  If you're having doubts, I would read that blog post because so much of what she talks about is her level of understanding that she brings to this condition as opposed to "shots in the dark" that many healthcare practicitioners seem to make. 
             It takes a lot of strength to deal with this condition and it takes additional strength to justify our "unconventional" approach to healing.  But ultimatley you know what's right for you and hopefully with time it will become easier to let other people's opinions come into your sphere, and then go again without rippling you.  In terms of worrying about healing, I think that it's natural for all of us to wonder if we're the exception that Matia can't help.  All any of us can do is take one hour at a time, asking ourselves, can I be with myself right now, in this moment? (at least that's what I'm trying to do with my anxiety this morning) and then continue on from there. 
I hope the rest of your day is better than the start!
                Claire

It just shows one more time that traditional doctors have no clue. Perhaps the new doctor was trying to be helpful. (??). You should have dropped the conversation right there. What happened is nothing than a learning experience not to talk about your choice in public. I am tempted to discuss my treatment with people who seem to be open-minded, people who I meet at yoga, who belong to health eating clubs, etc. Even then, I am hesitant because even they may not understand, not because they want to condemn me but because they never hear heard of IC. Particularly, when I describe pain or having to go every 15 min I know I would be looked at as if I belong to a different planet. So, I put a smile on my face and talk about something else, if I feel like it, or just walk away if disconnect becomes wide. I learned not to allow the situation to get there by avoiding discussing my condition and looking for support from strangers. I only discuss my treatment with a few trusted people with limited details.  
I know you were not looking for any advise, but someone had a strong opinion about what you should do, that turned our to be almost offensive because of their lack of understanding or personal tact. 
Perhaps you’d like to institute a rule not to let your coworkers and superiors into your personal life. I had that rule after watching numerous people disseminating personal information at work. In most cases it worked against them. 
I don't mean to add to your injury today. You are human, you were in weak state. Some other day you would have reacted and handled it differently. I would advice again to avoid discussing details with anyone at work if they are not helping you to get where you need to go. If they are being nosy or get too deep into your personal business, even if they have best intentions, don't let them shake your soul and get you out of balance. Stop talking about your health and don't take it personally. Have a few phrases to alert them that that topic is not for discussion or be ready to route the conversation to a different topic. Don't take their inquiries and advise personally. They may in fact have good intentions, just have no knowledge.
Be strong. See if Matia can help with anxiety and sleep. Well rested, you will be less vulnerable. Best wishes.
 
 

Lynette my dear,
I think it is so tough to be "strong" when you feel so bad and are having so many doubts yourself.In your shoes,who wouldn't be? How to truly let go of that anxiety is such a question and a process and some days are better than others I am sure. Progress not perfection.. Everyone has given you so many good ideas. When I start to feel doubts and fears creep in (again this is easier for me because i am finally seeing some real improvements plus I wasn't that severe to begin with ) it helps me to break it down into what I know and I try to forget the unknowns!
Knowns for me-
-I have always believed chronic illness begins in the gut and Dr Brizman's views on just about everything line up with what my philosophy had become over the  years.(unfortunately damage had been done)
-She is an caring expert who has healed so many people- many terrible cases have totally healed.
-I don't believe western medicine knows how to handle most (if any) chronic illness and for me I just couldn't go that route unless it was the only option left.
 
It is so hard when someone is challanging you that way and really I don't see how you could have done anything to prevent that. SHE was out of line. SHE has boundary issues.
 
 
 

Hi lynette,
Whats her address? I,ll go & kick her butt!! :-)
No seriously i know how you feel. I met up with a couple of friends last year for lunch & as they,d choosen thai i couldnt eat anything. After i came back from the loo i caught them looking at each other with concerned expressions about me. They then launched into lecture about how gaunt ,pale unwell i looked, & suggested i eat normally. I hadnt seen them for ages & they had both put on a lot of weight & looked bloated etc but i of course didnt say anything back . I like you found myself close to tears , its hard enough trying to cope with the symptoms & limtations of this regime without so called " helpful friends & colleagues" piling in with uninformed advice about a condition they,ve no experience of. Trust yourself, know that you will come through this stronger & glowing with health. You are a lovely looking woman & will be even more so when better. I,m doing so well now lynette. When i saw the same friend on new years eve ( 9 months after gaunt comment) this time she was asking me for diet advice !! & if i could give her my regime!! So hang in there , the tables do turn.xxx love louise

Yesterday I had an interesting experience. I was ordering in line at a reasonably acceptable for my diet restaurant. The location was close to a college campus. Two girls in front of me were ordering 'everything vegetable'. Clearly, they were vegetarians. It seems to be a popular experimentation during college years. Oh, how I was holding my mouth to keep quiet and not to start a conversation with a question and a statement 'are you a vegetarian? do you know that it is not healthy’. I didn't do that, that wasn’t my place to speak. But... given a chance and familiarity with those people, who knows. Most likely I would keep out as a result of a planned in advance strategy not to upset their feelings. You see? Not to defend that doctor, I think that the learning experience here is there are many people around us and they have opinions, we should have strong roots in our own believe system while having respect for theirs. The highlight of this experience is not that the woman was inconsiderable and/or rude but the fact that Lynette needs to develop coping strategies and techniques because she will run into those people most everywhere she goes. I get strange looks from waiters while ordering dishes prepared using limited ingredients in restaurants. I am stronger now not to pay attention to those experiences. What a wonderful thing to remember 'an opinion is like an invitation. You accept it or you leave it.' In Lynette’s case, that conversation was the last thing to break camel’s back. It happens.
Dear Lynette, I hope you feel better soon, so you can build endurance and resilience. May be some books and meditation would help?
 

I have learned (but sadly keep on forgetting/ignoring) I simply can't have conversations w/ others about my health choices or even hear from them about almost anything at all re: my situation... I keep falling into the trap of feeling I need to defend myself/choices or respond to others' opinions (bless the person who shared the "opinion/invitation" quote- so helpful!), but beyond that, even though most people are well-meaning, it does absolutely no good for me to have these conversations, and in fact it does harm: (1) emotionally and (2) even physically making me worse, b/c it unnecessarily triggers my doubts and then triggers my fearful/reactive nervous system, which are the last things I/any of us need going thru an illness & treatment that is already so very difficult.  For me personally, as long as I'm on this treatment, I need to stay 100% on board w/ Matia... so every time someone brings up anything to the contrary or questioning or suggesting a doctor/treatment they've heard about, however benign, (which people continue even when I ask them not to!) it actually has a negative effect b/c it triggers those latent self-doubts that I have regardless of how much I trust Matia, just our natural doubts... which then takes you down the path of 'am i doing the right thing?' and 'oh crap, what if this doesn't work??'  Which is wasted and negative energy... b/c constantly being in a state of flux w/ questioning if I'm doing the right thing, I can't having that keep coming up, I have to commit to this path and be on it (like the yogis saying the worst is to be in between two stools, you have to sit on one)... and also b/c these questions/comments serve as a constant reminder of what if this doesn't work, and while I wouldn't blindly follow Matia off a cliff, it's right for now, and so I don't need that doubt, I need to stay right now believing I will get well and this will work. 
 
I've largely had to shut myself off from the social world b/c even when I've tried to repeatedly be very vulnerable and direct about my needs, people manage to not honor that (unintentionally and well-meaning, I know) and so then I end up feeling worse. I know from my husband that many of them can't understand it and think I'm refusing outside help/support as in purposefully becoming a hermit and shutting myself off when I need social contact, and I'm well aware how vital social contact is and I do want it, but when people make so many well-meaning yet upsetting comments, I found it impossible to be in much contact without it making me feel worse, so I chose the lesser evil.  I did first try many times to speak up in the moment, and share (without attacking) how this is too hard to talk about or that just really isn't helpful for me, but it seems people can't understand/relate or take it personally or just "don't get it" (I know I can't expect that much though; I may not have been much different before all this either.)   Sometimes even a well-meaning fellow IC'er will send me something on, say, another treatment she heard about, or Matia herself will make a comment like how the extreme situation going on with me is "terrifying," and that alone can send me into a tailspin.  I know a huge lesson for me out of this process can be getting stronger within myself when dealing with others (like I said at the start, I always have such a need to defend), I'm just struggling with the HOW of it....
 
So... QUESTION:  When people start in with their questions and/or advice, what are some good lines to use to shut the conversation down without being rude?  I'd love to hear people's specific responses to BOTH b/c asking questions (even 'how are you?) and giving advice/suggestions are different things.  And what do you use w/ strangers vs. friends/family?
 

Rocket- Wow!Thank you for your long and honest post.
 
I get it. I know exactly the feelings you are talking about!!
 
I am doing better so i am therefore able to cope with things much better but I have had periods where I needed to semi-isolate. I still in some ways feel like I need a prortective bubble around me sometimes and I have decided that that is ok. I feel it is better to accept my feelings as valid rather than keep telling myself that I "should"be stronger or "should" be able to let things roll off my back. I find that when I am honest with my feelings- "Is this fear? Or is this anger? resentment?) They can melt away easier. Back in NOvember, in a phone convo my mother in law mentioned a nutritionist and when i said I wasn't interested she said" I just wish you were progressing" I actually talked to my husband about not letting her visit us, (SHe was planning on coming from out of town) In the end, I decided the free babysitting was worth it! LOL! My husband had a nice diplomatic talk with her and she really does get it now. I am very lucky that the people truly close to me are more than respectful- they are supportive. But the fact that I was willing to not have her come visit shows you that I get what you are saying.
 
But I am an extrovert and I need social interaction. I have found the perfect balance through going to Al- anon meetings. I find that  sometimes (although this is getting better) being with "normal" people is just too hard- I have struggled with jealousy, annoyance, feeling weird, defensive, etc. At al- anon I am in a group but the level of discussion is much higher than small talk and the issues that are raised -Trust, Control, Belief in a Higher Power, Letting Go, One Day at a Time and more are so incredibly applicable to dealing with IC and this treatment. My dad is an alcoholic and i really don't deal with him right now but I am learning that the survival tools I gained as a child do NOT serve me now as an adult. I look at the al- anon literature daily and sometimes I literally replace Alcohol with IC and it fits.
 
Anyway- The one thing i try to say to the question "How are you?" is "Getting there!- It's tough but I'm getting there!" I have started to know the people who are really asking and the ones who are really NOT asking! if they really DON"T want to know- I say "I'm hanging in there!"
 
I hope you start feeling less "extreme" ((((((((hug))))))))))))
 
 
 

I tend to say" oh i dont want to bore you or myself" and change the subject quickly. I do discuss with a couple of close friends and my family but leave it at that. To be honest i,m at the age where a lot of people start to have health issues so dont feel i want to spend too much time swapping suffering& symptoms . Try to keep off illness as much as poss, otherwise it can get too draining & downbeat. 
Another good line is " how long have you got " and laugh.. I think a lot of people are trying to be polite in showing concern but actually quite relieved when you are not interested in discussing back.
X 
 
 

Ps: i personally do find it rude to be told i look gaunt & unwell by a colleague. Its bull in china shop approach & especially inconsiderate if you know someone is suffering with an illness & doctors in particular should know better who to behave around the vunerable . But sadly in my experience they are some of the most insensitive indiviuals. If i thought that about someone i may find a way to engage them in conversation regarding their progress etc but not by demoralising them with derrogatory comments to them or other colleagues so they felt scared enough to accept my opinions over their own. I,ve had some awful experinces with doctors over the years & i,m afraid a lot of them do use " bulky boy & scaremongering" tactics to try & get you to accept treatments . Of course there are many well meaning people but watch out for their approach to you. 

Thank you from the heart for thoughtful replies thus far.
 
Deir -- Thanks for reminding about Al-Anon. I went for a while & read some of their books & found it so helpful -- I started bc of my MIL who is alcoholic, but saw it extended equally to how I am bc of growing up in very abusive/neglectful home, and extended to all of life really. Unfortunately, right now I'm still homebound so cannot go out anywhere. Your example of your MIL saying "I just wish you were progressing" -- I'm so glad you brought that up bc I deal w/ that same comment or variation often.... HOW does one best respond to that?  Esp b/c this is not my first time around w/ Matia and I never got to 100% before the whole thing snowballed again (though she did heal my bladder & some other issues before this so clearly it can work; just don't know if will work for this situation equally), so I think people are tiring of supporting Matia's method and/or thinking 'ok now it's time to do something else.'  But THEY don't have to take the risk of trying something else, as I fear anything would seriously compromise me --alternative OR Western -- and THEY haven't lived in my body and don't know all the details as much as they think they know of the situation, so I'm the only one who can comprehensively evaluate everything. But most people look at it as me blindly following Matia yet again and her scaring me into not doing anything else. 
Even when I've said the above to a few close people, they may shut up for a while, but then it starts again. I know everyone's well-meaning, so pls don't misunderstand when I say I want them to BUTT OUT FOR GOOD, but I say that lovingly.  Even as I'm writing this, though, the Al-Anon stuff is dropping into my head, reminding me that asking for/demanding what OTHERS do is not possible or reasonable and only hurts myself b/c that's not under my control. I need to focus on what is under my control -- my attitude, my response -- and on not letting it get to me. But damn it's hard.
 
Jumper-- Sounds like as you are older it's different; for me people's comments/questions are unavoidable bc I am so (relatively) young, the only young person so ill that people know, so it's the salient issue always & very shocking ie when they see me (still so skinny/looking like crap). And even those in my life who are older, my parents generation and such, are all the more concerned bc they say it's expected for their age but not for mine and I've been sick so long, etc etc.  ....  I did love your answer of "How long have you got?" to how are you? --thank you for that.