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  1. #1
    ICN Member
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    My Family Doesn't Believe Me

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    My family does not believe I have IC. My husband and my mom think that I am making it up and that this is all in my head. They don't seem to understand the magnitude of pain I go through on a weekly basis. Does anyone else go through this?

  2. #2
    ICN Member Clevsea's Avatar
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    Re: My Family Doesn't Believe Me

    I think my family underestimated the pain and the other symptoms but with time they sure did come to understand. I guess they needed to see it. I'm not a crier and now I cry about once a day due to pain. Once you've seen that then I think you begin to comprehend that this is not only real but devastating.

    I hope your family grows in their compassion toward you.

  3. #3
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    Re: My Family Doesn't Believe Me

    My mom and dad aren't that supportive either. I just ignore them. My mom likes to make it about her and her mango allergy. Like being allergic to mango is exactly like all of our diet restrictions. I'm sorry they aren't supportive. Maybe if your hubby went with you to the uro and they explained it to them?
    ----------------------------------------------------
    My blog on IC, adoption, and academia: the garlic whisperer

    Diagnosed Jan 2013. Currently taking:

    200mg Elmiron morning and night
    25mg Elavil at night (no drowsiness or weight gain)
    culturelle in the morning
    SLIT drops for allergies (environmental) 3 drops/night under the tongue
    zyrtec 24 hour nightly (recommended by uro)
    Instillations 3x/week: Parson's Solution
    uribel and prelief as needed

    Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
    No longer need them, so I only take them during flares.

  4. #4
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    Re: My Family Doesn't Believe Me

    I was gonna suggest you should take your mother and/or husband to an appointment as well. You could show them pictures of an IC bladder. If you don't have one of yours, then I have seen some online, like on an IC website, before. You may be able to get them to read some information on IC. What do I know? I don't figure they would read my post, but I will state IC is a real chronic illness. Come on. It is not a garbage bag diagnoses like Dr. Drew said, either. My family members that all live in our area, same county, all know I have to pee more often. Some may not be all too concerned with their busy, productive lives, or even remember the correct name, but I have had it over 17 years by now. Oh, yeah!

  5. #5
    ICN Member LithEruiel's Avatar
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    Re: My Family Doesn't Believe Me

    I'm sorry to hear this. A lot of people deal with this from family and friends unfortunately. I've been fortunate to have support from my family with whatever health issue I'm going through, but my boyfriend's friends and family have made fun of me and gossiped to each other about me having IC - therefore, I no longer talk to or see any of them.

    I'm starting to think this isn't just an IC or misunderstood disease issue though. I've been dealing with chronic pain in my foot and lower leg for over a year. It wasn't until I saw the third doctor that anyone actually tried to find out what was causing the pain. The first two said it was tendonitis and told me to wear a brace which didn't help, yet they wouldn't try anything else. It gets so bad that I can hardly walk sometimes. I work 12 hour shifts on my feet all day and no one at work takes me seriously that I'm in constant pain - and I just found out my manager doesn't like it when people don't volunteer for overtime, which I obviously don't due to the pain. Imagine if anyone at work knew I had IC too...

    Lots of people have overuse injuries so why have I had such a hard time being taken seriously? So what is it? Is it because I'm a woman? Because I'm "young"? What?
    ~Ashley

  6. #6
    ICN Member Clevsea's Avatar
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    Re: My Family Doesn't Believe Me

    Quote Originally Posted by miniguinea73 View Post
    My mom and dad aren't that supportive either. I just ignore them. My mom likes to make it about her and her mango allergy. Like being allergic to mango is exactly like all of our diet restrictions. I'm sorry they aren't supportive. Maybe if your hubby went with you to the uro and they explained it to them?
    Tell your mom I'll trade her a mango allergy to not being able to eat most Italian and Mexican food, coffee, chocolate, onions, salt, most cheeses, most spices, and so much more there isn't room in this post.

    The wording I get all the time is, "Oh, you're gluten free .... well, I went gluten free too!" with a giant, triumphant smile on their face. Or I will over-hear a family member or someone tell the waiter that I'm gluten-intolerant. Or when I ask if there is chocolate in the dessert the waitress will come back and say "Yes, that dessert is gluten-free."

    When comes to our food restrictions people don't understand very readily.

  7. #7
    Support Leader Julie B's Avatar
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    Re: My Family Doesn't Believe Me

    When it comes to the diet, I just wrote something about this on my blog: http://interstitial-cystitis-diet.bl...er-family.html

    I think one of the most important pieces of advice that I learned when I was first diagnosed was that that family members go through the stages of grief along with us. Their lives have been jerked around also, and they are trying to find a new normal along with you. Please continue to show them things from here, the ICN, and hopefully they will catch on.
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

    IC Diet Webinar
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    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter


    *Let's Connect!*


  8. #8
    ICN Member Tectonic's Avatar
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    Re: My Family Doesn't Believe Me

    I'm very sorry to hear yet another ICer report a lack of support of (or belief in) their struggle with this disease (and often times many things at once as pointed out by LithEruiel....I hear ya, foot pain, overtime & all).

    I get so angry when I remember some of my aunt's first remarks after telling her about my diagnosis. So many times I have heard variations of:
    • "I've never heard of that. Are you sure?" (Uggghh, how many doctors need to repeat it to make you believe me?!)
    • "You're too young for something like that!" (Disease knows no age.)
    • "You're making whatever this worse with stressing over it. Lighten up." (Yeah, my life just got turned upside down at 26, I'll get right on that!)
    • "I never see you smile any more." (It was a hard thing to do in the beginning and for a long time after the Dx).
    • "What, you can't eat THAT?! It's GOOD FOR YOU! Anyone can eat that!" (Hasn't read the food list, won't read the food list.)
    • "You're starving yourself! Eat something!" (In the beginning, I was terrified of eating and lost weight, but not for lack of trying to keep it on.)
    • "You know you did this to yourself, don't you! It was all of those PROTEIN SHAKES you were drinking!" (...she finally accepts that there's something going on and blames me for it, of course. That one really hurt and still does. Prior to the onset of symptoms, I was consuming on whey protein shake a day...if that "did it", why doesn't every body builder on the planet have IC as well?!)


    Ugh....our once close relationship has been utterly demolished by her response to my diagnosis and lifestyle changes. I guess it revealed a lot to me in regards to her nature. It has hurt a lot, too. Most people think my issue is incontinence (not yet!), and don't question my fret over caffeine because they think I just don't want to pee myself. If only....nah, that sucks too.

    Hang in there. We're all here for you and eachother, and you **are not** alone.
    "Diagnoses"
    Vestibulodynia, endometriosis (dx via symptoms only), IC (dx via symptoms only), PFD, uneven legs, pelvic muscular dysfunction

    Present Treatments
    EMDR Therapy Dec 2013-June 2015; Mindfulness Style Meditation early 2014-Present; External PT Dec 2013-Dec 2014, daily exercises at home; Intervaginal PT March 2015 - Aug 2015 Chiropractic Mar 2014-June 2015; Therapeutic Massage Apr 2014-April 2015; cut caffeine out of diet; I lost my health insurance Sept. 2015!

  9. #9
    ICN Member Clevsea's Avatar
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    Re: My Family Doesn't Believe Me

    Quote Originally Posted by Tectonic View Post
    I'm very sorry to hear yet another ICer report a lack of support of (or belief in) their struggle with this disease (and often times many things at once as pointed out by LithEruiel....I hear ya, foot pain, overtime & all).

    I get so angry when I remember some of my aunt's first remarks after telling her about my diagnosis. So many times I have heard variations of:
    • "I've never heard of that. Are you sure?" (Uggghh, how many doctors need to repeat it to make you believe me?!)
    • "You're too young for something like that!" (Disease knows no age.)
    • "You're making whatever this worse with stressing over it. Lighten up." (Yeah, my life just got turned upside down at 26, I'll get right on that!)
    • "I never see you smile any more." (It was a hard thing to do in the beginning and for a long time after the Dx).
    • "What, you can't eat THAT?! It's GOOD FOR YOU! Anyone can eat that!" (Hasn't read the food list, won't read the food list.)
    • "You're starving yourself! Eat something!" (In the beginning, I was terrified of eating and lost weight, but not for lack of trying to keep it on.)
    • "You know you did this to yourself, don't you! It was all of those PROTEIN SHAKES you were drinking!" (...she finally accepts that there's something going on and blames me for it, of course. That one really hurt and still does. Prior to the onset of symptoms, I was consuming on whey protein shake a day...if that "did it", why doesn't every body builder on the planet have IC as well?!)


    Ugh....our once close relationship has been utterly demolished by her response to my diagnosis and lifestyle changes. I guess it revealed a lot to me in regards to her nature. It has hurt a lot, too. Most people think my issue is incontinence (not yet!), and don't question my fret over caffeine because they think I just don't want to pee myself. If only....nah, that sucks too.

    Hang in there. We're all here for you and eachother, and you **are not** alone.
    Your aunt's comments really do sum up the attitude shown by (some of) those who don't know much about IC and what we can and cannot eat. Very well stated!!

  10. #10
    ICN Staff ICNDonna's Avatar
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    Re: My Family Doesn't Believe Me

    Quote Originally Posted by princessbunny View Post
    My family does not believe I have IC. My husband and my mom think that I am making it up and that this is all in my head. They don't seem to understand the magnitude of pain I go through on a weekly basis. Does anyone else go through this?
    You might try taking them to a urologist appointment with you. I don't think they are being intentionally cruel, but it can come across that way. I hope you feel better soon.

    Warm hugs,
    Donna
    Have you checked the ICN Shop?
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  11. #11
    ICN Member Tectonic's Avatar
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    Re: My Family Doesn't Believe Me

    People fear what they don't understand. People freak out when they're handed too much change at once. Patients included! I get my some people can't accept this stuff, but it's so frustrating. "Oh, you've changed in a way that I can't relate to? ....Okay, that's too far outside of my comfort zone/scope of belief. Bye." It's a pretty typical human response. It doesn't help that IC (and endo and vulvodynia, etc) are "invisible" diseases as well. Some may need physical, visceral "proof" of such a radical, life changing condition, and they're going to have a hard time getting it.

    ((DON'T get me started on that "Dr." Drew Pinsky ******* from this weekend...RAGE!))

    A joint visit to a uro or other health care professional might help. They can talk to the doctor directly if they would trust their word over yours.
    "Diagnoses"
    Vestibulodynia, endometriosis (dx via symptoms only), IC (dx via symptoms only), PFD, uneven legs, pelvic muscular dysfunction

    Present Treatments
    EMDR Therapy Dec 2013-June 2015; Mindfulness Style Meditation early 2014-Present; External PT Dec 2013-Dec 2014, daily exercises at home; Intervaginal PT March 2015 - Aug 2015 Chiropractic Mar 2014-June 2015; Therapeutic Massage Apr 2014-April 2015; cut caffeine out of diet; I lost my health insurance Sept. 2015!

  12. #12
    ICN Member Tectonic's Avatar
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    Re: My Family Doesn't Believe Me

    And don't give up hope. They may come around after a period of acceptance/grieving that they have to go through on their own over this. Either way and along the way, the ICN community is here for you, too.
    "Diagnoses"
    Vestibulodynia, endometriosis (dx via symptoms only), IC (dx via symptoms only), PFD, uneven legs, pelvic muscular dysfunction

    Present Treatments
    EMDR Therapy Dec 2013-June 2015; Mindfulness Style Meditation early 2014-Present; External PT Dec 2013-Dec 2014, daily exercises at home; Intervaginal PT March 2015 - Aug 2015 Chiropractic Mar 2014-June 2015; Therapeutic Massage Apr 2014-April 2015; cut caffeine out of diet; I lost my health insurance Sept. 2015!

  13. #13
    ICN Founder icnmgrjill's Avatar
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    Re: My Family Doesn't Believe Me

    I would be more than happy to talk with you, your family and anyone who is struggling to understand what IC is! You might also find this video very helpful!

    Jill Heidi Osborne
    ICN Founder

    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  14. #14
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    Re: My Family Doesn't Believe Me

    Hi Princessbunny, it is awful that your family dosent belive you!!!!! My husband is a HUGE supporter for me always taking great care of me. Our older son(20yrs) thought that I was over exaggerating my IC til his girlfriend forced him to do some research.... now he is very surportive... I could not imagine going through this without my families surport!!! Not only is it the pain and discomfort I am on elmiron and its making my hair fall out to the piont I had to get a wig. IC is AWFUL!!!! But IT think not having your family surport is even worse! We will be praying for you!I feel so bad for you hun.. I truly hope they turn around for you!!!!!!

  15. #15
    ICN Member Antonia11's Avatar
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    Re: My Family Doesn't Believe Me

    I am so sorry that you are going through this. I tended to forget the trauma of my early days of DX, of friends telling me I was focusing too much on having IC, doctors telling me it wasn't real, etc. This is why I basically didn't mention having it for the last 15 years. I did also have near remission, or at least minimized symptoms that were barely noticeable which made it easier. I don't say that to rub it in anyone's face, either, I say it because I was basically disabled by this disease for 5 years and somehow managed to get it under control (Paxil seemed to do most of that.....time did a lot more).

    All I can say is that, and I don't want to go into it because I really overwrote it on this site tonight, but last year I suffered two pelvic injuries: a labral tear to the right hip (I already apparently had torn my hamstring tendon) followed by the tearing of 10 (yes, TEN) muscles that attach to the pelvis. I was shuttled right back to my early IC days. No one believed me, even my husband said (before I was DXed) that I turn a hangnail into a medical catastrophe and blow it out of proportion (I'm a yellow belt in Krav Maga, btw, and used to spend my days getting punched and kicked by grown men, while being on no meds at all--I do NOT blow things out of proportion or react strongly to pain, generally) all because he remembered my early years with IC. And in the process took me back to them as well.

    In short, I got "the Dr. Drew Treatment", and we all do. It's a woman (not always, there are many men, too), it's pelvic, it's not been seen on a scan, it's got to be something she's just freaking out about. Because no one can see it. They see a normal, healthy looking person, and hear the name of a disease they know NOTHING about. And they see and hear all of this while inundated with messages that people with chronic pain conditions are annoying, malingerers who just want attention (most of us seem to want to hide under a rock, from what I've known in 21 years of having IC, not jump up and down trying to get attention for it at all). It was bad enough with IC, but after what I just went through, I'm convinced it's what Dr. Drew projected to the world in just a few minutes. Or as I responded when my PT said I should write a book once I healed, and I was still hopeless so I said I'd call it, "Yes, My Pelvis Fell Apart and No One Gave a S&^$".

    The good news is that in a lot of cases, the body slowly adjusts and the brain tunes the bladder pain to the background. It can take years, but it happens quite a lot. Keep reminding yourself that it's not actively hurting you (not like a tumor, or something that is worsening, growing). It's just there. It's just a bladder. It takes time, but eventually your brain responds to issues like the pain and frequency as just being there, not being a signal that you need to get up and run to the bathroom. Eventually, if you can make it there, there's a place in your brain where it just sort of gets filed away...where you learn to shut off the pain and carry on. When you stop panicking that you can't HAVE a certain food, it just becomes something no longer on the menu. A time where your bladder isn't on your mind constantly, but in the normal ways it is for others (Did I pee before I left the house? Because all they have at that place are port-o-potties, and they're just gross....). There are flares, but then there become stretches where you forget you ever had it.

    At that point, your family finally will come to understand the odds you've beaten and how strong you are for having survived this agony. But for now, WE believe you, modern medicine believes you (Dr. Drew excepted, naturally), and if your family members don't get it, then it's their problem. Because one of these days, you'll walk in the sun, happy and not focused on pain and your bladder, maybe in the woods, maybe on a beach, and you'll feel like the strong person you are for having survived a hand than some are dealt. I realize that's small consolation for NOW, but for now, realize that you have at least all of these people on this thread who DO believe you and want you to get to that day when you forgot you even have this disease.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

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