After 3+ years, my family still doesn't believe me

[lm2]

I really need my family for support. It also complicates things that they still help me financially because the disability I get isn't enough. I don't even know why they think this as I never made up problems before this. I had a long standing gynecological problem (which was mistreated) but I was otherwise healthy..in fact when I first got this (as a real bladder infection), I stubbornly didn't take antibiotics right away even though my symptoms were totally awful. Most women can't even live one day with those symptoms, so I'm hardly a wimp. They admit that something is wrong with me but are always saying I'm totally totally distorting things, or that it's 90% in my head, my dad recently said something like well my dear, most of it is in your - and tapped me on the head...etc etc. [img]frown.gif[/img] I think they are just saying this now more so than before because my doctors have all given up on me getting better and so my parents have now decided that if I only took antidepressants or something, suddenly I'd be better. It's like they don't want to admit there is no control over this. I don't want to make them sound awful because they're the most incredible parents and my dad used to say if he could he would switch bladders with me, but this not believing it's as bad I say just devastates me. How would they know? I've tried to explain, give them articles, etc. etc. but they always dismiss that. They say well some people can exaggerate symptoms and those people are all crazy, etc. and most people with your disease live normal lives. I guess I should give up on trying to make them believe me and understand but I just still need them too. I just don't know if I should just force myself to give up as nothing I say makes a difference.

[Jen_Cole]

Elm-sorry to hear this. Have you ever taken them with you to a doctor's appointment? Maybe if they heard it from your doctor, it would help? I know that you may think that if you tell them, it should be enough. That's what I would think. I am lucky in the sense that my parents don't even question anything-my brother went through this at the age of three (he's now 30) so they know exactly what I'm talking about. I guess you can only explain so much. Good luck to you.

[lm2]

Thanks Jen,
They came with me to a few appointments at the beginning and I think they believed me more then. But even then a few doctors said the odd thing that he still to this day uses against me...for eg. one doctor said the bladder is an "emotional organ", etc. It has been getting progressively worse in the past year as it became clearer to everyone that nothing was working and I think they couldn't handle that reality so suddenly the focus is on me and what i'm doing wrong. To me it's very clear that is why they're doing this (mostly my father), but it makes no difference. Anyway I think it is a lost cause - if my dad comes with me to my next appointment (he wanted to actually but only because he flat out told me he didn't believe what I told him the doctor said), he will still find a way to not believe since he can't see or feel my pain so he will always conclude that. It's just sad though because I don't think I will ever be able to have a real relationship with him again and he was the most wonderful father who would do anything for his kids. [img]frown.gif[/img]

[Tina Nacho]

Hi Elm:
I'm so sorry that your family is treating you this way. It's always the people that we are closest to that hurt us the most, but I think your father is having a typical response to the disease. My mother doesn't quite get it either. Can you show him a picture of your bladder that was taken during a cysto w/hydro? Although my doctor doesn't have the pictures in my file at his office, the hospital does and I can request a copy of them for free (the hospitals in your area may have different procedures to accomodate your request for the picture, but I don't think you would have any problems).

Maybe offering up an example of another disease that he could understand might help. Is high blood pressure an "emotional" disease. If someone with high blood pressure gets "upset" or "emotional", doesn't the pressure react to it by elevating? Everyone knows that high blood pressure is caused by the narrowing and hardening of the arteries. Ask him if arteries are emotional organs and see what he says. The bladder isn't the "emotional" organ that your doctor stated it was. That sounds like an incredibly insensitive and uninformed thing to say and it reflects very negatively on that quack doctor you saw with your father. The fact is, IC is a disease that is currently under study and there are many doctors out there who flat out don't get it. And they never will.

The bottom line is how YOU feel about the disease and not how others perceve it to be. People are who they are and we can't change them, so don't waste your time trying to convince them of the validity of your bladder condition. Spend your energy wisely...on getting and maintaining your wellness. >Tina

[Jo]

Elm, Although stress does cause our IC bladders to flare up, I really don't think it was right or fair for that doctor to call the bladder an "emotional organ" like it is an isolated issue. For me, that doctor's statement seems to minimalize IC. It's been proven too many times that our entire bodies are negatively affected by excessive stress which in turn triggers all types of illnesses and leaves us susceptible to various diseases. Stress is a big problem for me and flares my bladder but I think it is from the excessive acid produced in my stomach when I'm under stress. I'm not able to take any of the current available medicines or treatments for IC and have to rely on the diet as my only means of external help. I've asked my doctor about taking the hydroxyine as it seems to be one of the few available drugs for IC that I'm not allergic to. He dismissed it with the statement that he hasn't found that it helped much with his other IC patients. He also has never offered anything for pain, but since I am now taking medicine for arthritis, I somewhat manage with that during IC flare up times. I was just wondering if you are trying to follow the IC diet? Just from my own trial and error, I've found a lot of things that are IC triggers for me that others are able to tolerate. Just want you to know that there are others like you who have not been helped by the current medical treatments. Jo Ellen

[Yvonne47]

Hello Elm:

If I were in your shoes I would phone the Uro in advance and tell him you are bringing your dad and the reasons why. Ask the uro if he/she would talk about the symptoms/pain that you are going through and inform your dad that IC is a disease of the bladder and not of the head.

I hope you can find the emotional support that you need from your family. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

Yvonne <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[Kelli]

Hi elm, I am sorry you are having such a difficult time with your family. Mine didn't get it at first either. I tried everything to get them to understand what I was dealing with. I cut out articles, I took my mom to the Doctor with me, I even begged her to try to understand what I was dealing with. I bought The Interstitial Cystitis Survival Guide. Then I bought one for her. within a few days she was calling me asking me questions like, Is this what you go through, is that really what is happening???? After reading the book I think she has a better understanding of what I go through and tends to be more supportive now. I will ask god to help your dad better understand and be more supportive. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[havehope]

I'm sorry you are not getting the support you need. My aunt has had a lot of bladder problems, but when I tried to discuss this with my mother she dismissed it as "Oh, she has always had problems with something or other". My aunt is dismissed as being neurotic......so I guess I am too. Very frustrating.
Also, Jo, I would highly recommend the doctor prescribe you antihistimines if you want them......for me, they really helped with pain. Everyone is different, but there should be no reason why your doctor couldn't prescribe them at your request....you're not asking for morphine or any other narcotic, so he shouldn't be hesitant.

[lm2]

Thanks everybody. I guess I will just have to keep reminding myself of why they're doing this and that it's not because of lack of love. It's frustrating though but I think what hurts me most is because of everything they have done for me and then I went and got this and I feel so awful about it as it's basically ruined their life and it breaks my heart. I supposed it's also more complicated as my IC was my fault (but please don't argue with me on that point as this is an undisputed fact if you knew the details of how I got sick). People here seem really averse to that idea but I'm just stating a fact...I'm not saying I deserve it but it's because of my actions that I got sick. It's a really really tragic story. So I think they might be thinking of that too - and that must factor into how they look at me with this. There is probably some anger and frustration etc. that is all tied into this. Coupled with the fact that I was a somewhat anxious person before which I think hurts my credibility (although I never said I was sick when I wasn't) Anyway...nothing I can do about it so I guess there's no point in harping on it. I am just so heartbroken at how I've ruined my parents lives. It's all so sad. [img]frown.gif[/img]

[Alleycat]

Elm~
Im very sorry that your family is not understanding your condition. I would think of all people your family would try to understand and give you their love and support. I agree with maybe asking them to come with you to a Dr's appoint one day..just to have them there and to see what your life consists of. Well, you know you have life-long friends here that are always offering you love and support. You can always come here ! [img]biggrin.gif[/img] I hope one day, they will come to understand what you go through and support you. Sending healing prayers your way. Take care ((HUGS))

~Alison~ <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[Missie]

I'm so sorry you are having to deal with this AND IC. I agree about taking them to an appointment. Before my dad got sick my mother went with me to every appointment, every treatment. She totally understands and has explained how it works to my father. So both my parents back me up totally. It took my husbadn a little longer..he basically ignored me and my pain. We were together before I ever started having real problems (we were high school sweethearts, lived together 3 years before gettin married). I brought him along to my appointment one day where my uro showed him pictures of a normal bladder and then an ic bladder. That scared him and now he is very supportive. Also after he saw me screaming in pain after my hydro he sympathized alot more.
Have you ever tried to show your family the pictures here online of an ic bladder?That might help alot. Although not everyone has the ulcers that the picture shows, it can show your family what MIGHT happen without treatment. be sure to show the a healthy bladder too so they can see the difference.
I hope this helps.

[Melanie R]

I know how you feel about not having some people believe you! It is so frustrating...but they are just scared. I hope things get better!!!!!!!!!

[lm2]

Thank you all for your support.

I just edited my post because I blabbed too much. My dad came with me last week and it was a bit of a disaster...my doc started saying things she never had before and it only hurt rather than helped. I've tried to just ignore it the past week but my dad is all mad at me now and telling me i'm sick in the head...well it's a long story. I'm just so tired of not being believed. I'm going to try and get them to come to see my psychiatrist.

[lm2]

Well he just yelled at me again about why isn't it so obvious to me when it is to him that the reason I haven't responded to any treatments is because of my mental state? [img]frown.gif[/img] My doctor has always said to me how they don't really have any effective treatments and nothing has really been discovered in the past 10 years, etc. but when my dad was tehre with me last week she omitted all that and was just talking about how I needed emotional support. My dad took that to mean that was an integrative approach to getting better, although she says (when he's not there), it's about learning how to cope. I just called and left a message that I don't know why she changed her tune like that but it hurt rather than helped me. If I had no choice, I would probably just stop talking to them at this point but I have to because they support me financially...and there's so much guilt tied into it as well.