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  • You Don't LOOK Sick



    Having IC in most work situations is difficult but having IC in the military can traumatic. There are so many challenges, including: loss of career aspirations, very uninformed medical care providers, difficulty with judgmental peers and superior officers. It's tough. I've personally worked with air force pilots with IC, generals with IC, a member of a military band (who was expected to stand for hours without using the restroom)... the list goes on and on. Ironically, an MD at Travis Air Force Base assessed all active duty women on his base a few years ago using the PUF questionnaire. He found that almost 30% had some symptoms of IC which, in all likelihood, is probably an indicator of how stress can impact the bladder as well. In any case, I love this post... and how colourmetwice is coping! Well done!! - Jill

    This is the biggest downfall and misconception of far too many diseases.

    I was taken out of my main job in the military (working on aircraft) and stuck into what we call Limited Duty. Instead of turning wrenches I'm doing paperwork.

    I work for a legal office, and almost all the help up here in on limited duty. One is pregnant, one has a bum leg, and then there is myself and one other guy...and we hear that phrase sssoooo often.

    I have IC; he has Crohn's disease.

    We both feel like crap far too often, but aside from a sagging smile that we are required to hide from our customers, well, let's just say we obvioususly don't have a bulging belly or a cane.

    People always ask everyone up here why we're here (we have symbols on our uniforms that state what our regular job is, so its obvious we belong on a flightline and not in a legal office). We tell them we're limited duty.

    And then comes the quizzical look, the once-over, and the inevitable, dreaded, "For what? You look fine to me!"

    *Note to self: Resist urge to reach across counter and smack customer neeeding my help.

    After trying to explain IC and seeing even more confused looks and getting into a far-too-in-depth conversation about my health (or lack thereof) which just seems to leave both parties even more uncomfortable with the situation, I've taken to keeping it short and sweet, even if I have to bend the truth a bit.

    I have ulcers in my bladder.
    I'm in recovery from an illness.

    Something, anything, that doesn't leave me embarrassed and them wishing they hadn't asked.

    I hate saying "I have a bladder problem". People are none to kind to that sort of thing. Especially in the military, because I say "bladder problem" and they hear "she's not potty-trained". And "not being able to hold it" is a "wimpy" reason to not be doing your job.

    When I first tried to explain IC people made the rudest comments.

    After I told someone I experience bladder spasms they literally asked me,
    "Does that mean you piss yourself and don't know it?"

    Another common and unwlecome comment:
    "Is that contagious? Shouldn't you be quarantined?"

    The very best was when my husband asked his doctor (a Navy doctor keep in mind) at the very beginning of all of this, when we didn't know what to do or where to go, if he had any information about Interstitial Cystitis.

    The doctor thought about it for a minute, then said,
    "IC? That's something to do with your heart, right?"

    So I stopped trying to explain to people who really didn't need to know. The people I work with on a regular basis need to know. The people who come and go on a regular basis, do not. It just makes things unnecessarily difficult.

    That being said, I know its not just me who deals with this. I read so many posts from people dealing with the same thing. After a while, I really stopped caring about that, I won't lie. It was "okay, I get it, everyone else with IC is angry and frustrated and hurt too, this doesn't make me feel better".

    After talking to a friend who has Crohn's and now working with someone who does, its more of a relief to know that there are plenty of things out there that you can have and not LOOK sick.

    This isn't an IC problem, its a general population and, heck, an evolutionary problem.

    How many of YOU, before knowing someone or dealing with this yourself, assumed that all the people around you without a wheelchair or a cane or a disfigurement were just fine? Hao many of YOU have seen a person with a handicap liscense get out a car and again, not SEE something wrong with them and wonder or remark to yourself and/or those around you that you don't understand why that person should have a handicap license? How many of you have worked at a job and denied people bathroom access due to company policy?

    Just wondering...

    As much as it sucks, I can't justify getting angry with people who make rude comments. (I still get angry at times, I just know its not justified). Its not justified because I once was guilty of doing precisely what those people do. So maybe I wasn't quite as critical or as rude, but I was still guilty of thinking the thoughts.
    I worked at a drugstore for five years and after so many people ask you to use the bathroom, you really get tired of it. Especially when they use the bathroom to steal or any number of things. You just want to look at the next person who asks you to use the bathroom and say "Go before you leave the house, like your mother told you years ago".

    I never actually said this...but I was definitely guilty of wanting to.
    And yes, at times, depending on the manager, the bathroom was completely off-limits to the public (like when we just had someone pleasure themselves all over the bathroom wall...we didn't let anyone in there for a month due to our whole store being livid at "the public"). Something to keep in mind as well, it is not necessarily the fault of management, more of the customers.

    Anyways, to make a long story short, there are bearable, even fun, ways to live with IC.

    Nowadays, when people tell me I don't look sick, I just tell them yeah, that's part of the problem, and let them ponder that for awhile.

    Oh yeah, and when good-natured people come in to draft up a last will and testament, I jokingly ask them to leave me their bladder
    Last edited by icnmgrjill; 03-13-2007, 01:58 PM.
    -Taryn Vollrath

    Dx 2007 while in the Navy. Medical (honorable) discharge.
    Interstim 2008. Emergency removal of Interstim 2010 which nearly paralyzed me from the waist down.
    When I was first dx, I was literally on a shoebox full of meds. Now I am down to diet management, yoga, meditation, and only during flares Tramadol. Still go to ER on occasion for flares however due to the intense spasms my bladder does. Looking into Botox for said issue.

    My IC took my first marriage within a year. But I am remarried, with a step daughter, and doing fan-tab-u-lous! You can get there, ladies!!


    Consistently looking for ways to be proactive about a situation.
    My healing must start with my thoughts.


    "The acceptable and the unacceptable are both acceptable." -Tao Te Ching
    OOMM

  • #2
    hallelujah! i've had fibro since age 13...try explaining to teachers and friends how you feel "you don't LOOK sick!" (although yes, sometimes i did b/c i was in so much pain i couldn't sleep...). it got to the point where sometimes i'd MAKE myself look as bad as i felt JUST so ppl would stop whispering "she's making it up"
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

    Comment


    • #3
      How about, "Not all disabilities are visible." If you can stay friendly and matter-of-fact while saying it, that's good.

      I know you feel like responding to someone saying "You don't look sick" with a response like --- "and you don't look stupid." --- but that's NOT a good idea. It can be kind of fun to think it, though.

      Hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

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

      Comment


      • #4
        I understand how you feel -- I am a scientist, and there is a climate in science these days in which scientists (especially early-career ones like me)are supposed to work 100 hour weeks -- nights, weekends, you name it, you work it. My boss would probably buy a sleeper sofa for us if someone told him it would allow us to spend more time in the lab....

        But, because of my IC, fibro, MPS, IBS, migraines, asthma, and various other pains and diseases, I just can't do that anymore. My work schedule has to be "restricted" -- meaning, I have to work a 40-50 hour week like a normal person. AND I HAVE BEEN CHEWED OUT OVER THIS BECAUSE I DO NOT LOOK SICK. This is despite the fact that my boss knows about the IC, knows about my meds and my surgery....

        I've had "friends" do it too -- "No, I'm sorry, I can't have beer. I have an illness that flares up if I drink beer." "What? Who can't drink beer? Are you in AA or something? 'Cause you don't look sick."

        Ugh.

        I blog over on the Revolution Health site (http://www.revolutionhealth.com), and I have one entry entitled "Working with IC -- Part 1, Dealing with YDLSS." It goes on to explain that YDLSS is "You Don't Look Sick Syndrome," a disease suffered by so-called normal people. Here's the link: http://www.revolutionhealth.com/blog...-ic----pa-2734

        ****
        Jen

        *Diagnosed with severe IC in 2004
        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

        **I am not a medical authority nor do I offer definitive medical advice. 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.

        Comment


        • #5
          I had exactly the same experience and finally my old boss said "You must come from weak stock." Dear lord, could she be any more insulting than saying my family was weak too! Appalling!
          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.






          Comment


          • #6
            I have said it to Briza many times, but everytime I read a post like this, I think it again, "I dont know how on earth anyone works with this disease, but I am so proud of all of you who do! " I am amazed by the strength all of my IC sisters have, but especially those who are still out in the trenches, going to work every day. I honestly have no idea how you guys do it, but I am so proud of all of you!

            Colormetwice, thank you for your service to our country. A special to you for your selfless gift of freedom to all of us. Congratulations on winning the ICN Courage Award. It was well deserved! Thank you, Jill, for recognizing her service to our country and doing the unimaginable by doing this extraordinary while having IC!

            I hope that you all find meds and/or treatments soon that help you feel better. I hope you all find compassionate and knowledgable Drs. soon who can help you.

            Many hugs,
            Amy
            Last edited by ihurttoo; 03-13-2007, 07:07 PM. Reason: typo

            Comment


            • #7
              Verdicries-
              I know just what you mean by making yourself look sick sometimes-I've done the same thine. That way, they tell me to go home early from work instead of me asking all the time.

              ICNDonna-
              Not all disabilities are visible.
              Perfect! The phrase I've been looking for! Thanks a bunch!

              Everyone-
              We're all strong, even when we have our worst flare-up.
              Why? Because we're all doing what we can.
              We still wake up everyday and fight through it all.
              All the pain, the ignorance, the pressure, the exhaustion.
              Taking off work or not working altogether is not quitting.
              Its being honest with yourself about what your body needs.
              And really, that's the hardest part for a whole lot of us-
              admitting to ourselves that we can't do everthing that those around us
              want us to do.
              If they only knew what we were fighting through just to prove that we're still worth something to them! That we still have something worht contributing!

              If they really knew and understood...they would be beyond impressed with all of you
              -Taryn Vollrath

              Dx 2007 while in the Navy. Medical (honorable) discharge.
              Interstim 2008. Emergency removal of Interstim 2010 which nearly paralyzed me from the waist down.
              When I was first dx, I was literally on a shoebox full of meds. Now I am down to diet management, yoga, meditation, and only during flares Tramadol. Still go to ER on occasion for flares however due to the intense spasms my bladder does. Looking into Botox for said issue.

              My IC took my first marriage within a year. But I am remarried, with a step daughter, and doing fan-tab-u-lous! You can get there, ladies!!


              Consistently looking for ways to be proactive about a situation.
              My healing must start with my thoughts.


              "The acceptable and the unacceptable are both acceptable." -Tao Te Ching
              OOMM

              Comment


              • #8
                My mom and sister have rheumatoid arthritis and it is obvious. I have fibromyalgia and it isn't. I teach kindergarten and some days I just don't think that I will make it. I think it would be easier if there were visible signs. People are very unsympathetic. I have to bend a lot at work, which makes my ic worse. By the end of the day I am worn out. People just look at me like I am faking. They tell me that kindergarten cant be that bad, but they don't want to hear that I am actually in pain. When I tell them that I have fibromyalgia I can almost see some of them roll their eyes. They don't think that it is an actual illness. I just stay in my room now and try to avoid them as much as possible. I have one friend at work that truly understands. Her dad has Lupis. I completely understand how you feel. Maybe, someday soon people will realize that this is a serious condition.
                Melissa

                Comment


                • #9
                  Donna,

                  I have to smile at the, "and you don't look stupid.." idea. Now I have something to think of when people say, "You LOOK great!." Sometimes I reply, "because my face doesn't hurt." and think (But yours is killing me.) I know I shouldn't think that either......but it makes me smile.

                  Colleen
                  Diagnosed October 2006
                  Medications
                  Percocet
                  Hydroxine
                  Elmiron
                  Monthly installations

                  Comment


                  • #10
                    Donna,

                    I have to smile at the, "and you don't look stupid.." idea. Now I have something to think of when people say, "You LOOK great!." Sometimes I reply, "because my face doesn't hurt." and think (But yours is killing me.) I know I shouldn't think that either......but it makes me smile.

                    Colleen
                    Diagnosed October 2006
                    Medications
                    Percocet
                    Hydroxine
                    Elmiron
                    Monthly installations

                    Comment


                    • #11
                      MelissaT-

                      They think Kindergaeten can't be that bad?!?!

                      HAHAHAHAHA!

                      My mom teaches first grade and I have yet to see her come home from work NOT exhausted--and she DOESN'T have anything wrong with her.
                      -Taryn Vollrath

                      Dx 2007 while in the Navy. Medical (honorable) discharge.
                      Interstim 2008. Emergency removal of Interstim 2010 which nearly paralyzed me from the waist down.
                      When I was first dx, I was literally on a shoebox full of meds. Now I am down to diet management, yoga, meditation, and only during flares Tramadol. Still go to ER on occasion for flares however due to the intense spasms my bladder does. Looking into Botox for said issue.

                      My IC took my first marriage within a year. But I am remarried, with a step daughter, and doing fan-tab-u-lous! You can get there, ladies!!


                      Consistently looking for ways to be proactive about a situation.
                      My healing must start with my thoughts.


                      "The acceptable and the unacceptable are both acceptable." -Tao Te Ching
                      OOMM

                      Comment


                      • #12
                        Yes, I completely understand the "you don't look sick" deal as well. My mother-in-law is the worst. There are times that she calls "her" son to see if we want to go out to eat and he has to tell her that I am just too tired and don't feel like getting back out. I work full time. I have heard her say several times that I am sick when it's convenient for me. Yes, I have been playing this game for over 15 years. I do a lot of pretending, but it's pretending that I am fine which is exhausting all on it's own! It has driven a major wedge in our relationship which was great for many years. I have heard her tell people that her son has to take care of everything since I am always so "sick"!

                        My other issue is when my medicines are changed and sometimes the side effects are something to get used to or they eventually go away. One time my boss was asking me a question about something that he thought I messed up and made a hurtful comment that it must have been when I was on my meds. I just burst into tears which made me even more angry. I pulled the information he needed to back up that I didn't make the error. He pretends that he understands, but I work in a small office that makes it hard to be out for appts and such, so I try to make them during my lunch hour. At times they do run long and he acts peeved at me. I don't know why I let myself feel guilty about it, but it does.

                        Comment

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