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  • GRRR!!"Glad your feeling better" & "You LOOK good" comments

    Is it just me or does anyone else get steamed when you have others making comments to you such as, "oh, I'm glad you are feeling better" They seem to think because I drag myself and put on a happy face for my kids for Easter that I'm all better now.

    Another one that gets me when discussing my IC is "well, you LOOK good." As if the fact that I am too vain to go out looking bad means that since I look put together I can't possibly be that sick. Taking the effort to look nice makes me feel better about myself. Just because I don't go around looking like a ragmuffin doesn't mean my condition isn't as bad as I am saying it is.

    Not that I really expect people to understand my disease but these sort of comments don't help at all. It's like they are trying discount the severity of the disease or they see me as a fraud. IC doesn't show on the outside as some other conditions so it's so hard to get people to realize what we are going through. I just had to share my feeling about that. THANKS!

    PS. I have read the book- You Don't Look Sick? I just wish everyone I come into contact with would have read it as well.
    ~Laura

    There can not be a crisis next week. My schedule is already full.

    March 2006 IC tested positive

    current treatments for IC:
    Zoloft 100mg
    Prelief
    tramadol hcl 50mg (4-8 per day)
    diphenhydramine (1 nightly)
    elavil 25mg, Just started Nov 11

    additional meds for pain if needed:
    darvacet
    loratab
    percocet
    tried Elmiron for over year and didn't see much of a change, gained weight

    Also take Lisinolpril for high blood pressure

    Other conditions:
    IBS '93
    depression '94
    stomach ulcers '95
    Mitral Valve Prolaspe Syndrome '01
    Migraines since childhood
    Chronic Fatique '03


    It's not the number of years in your life that matter but rather the life in your years.

  • #2
    oh my gosh, I know what you mean. Yesterday at my in laws, I had at least 5 people commenting on how "good" I look when I just got over a flare, am battling bronchitis and keep running to the bathroom for diarrhea. I just kept answering (in a surprised tone) "Oh I DO?? Really???" and left it at that. I think they say that to make me "feel better" but when I'm feeling that poorly I don't want everyone to think I look totally healthy. I'm scared that they'll say that i'm just overreacting or lazy or something......

    Comment


    • #3
      OHHHHHH that gets me going to...People will say oh I am so glad to see you up and around you must be feeling alot better...
      You can imagine what I would like to say back to them..
      But yes that does make me so mad...
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


      • #4
        Actually, considering how very bad I looked when I was at my sickest... no. I wish I were as pretty as I was before I got sick, but I gained 35 pounds on Elavil. I've lost 12, but still do not look like I did before IC.

        I'm happy when someone says I look nice or better, because I am better.
        The IC is not gone, but my symptoms are definitely improved with treatment. The people I love or see daily know what I still go through, so I don't take it any further mentally than that.

        But, I do see this come up a lot on these boards, so no, you are not alone!
        Kadi

        -------------------------------------------------------------
        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.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          Sometimes I cannot stand those comments -- I got them around the time I had my InterStim surgery from people at work. "But you don't LOOK sick!" was a big one right before the surgery... they seemed to think getting a neurostimulator implanted in my behind was akin to having a nose job... elective, not necessary, a way to get out of work... rather than a last ditch option to relieve the desperate need to urinate constantly.

          One woman even SAID, "But this isn't a real surgery, right? It's not really operating on anything inside..." She showed not only a lack of compassion with that comment but a fundamental misunderstanding of the entire procedure.

          It was only after I explained to my boss that I now have a wire passing through my lower spinal cord, lying near my sacral nerve that he seemed to think that this was a serious step; still, I have no idea how long his period of compassion will last, as he's shown in the past that his periods of compassion are not permanent. He's like a compassion bipolar -- one week he's kind and gentle, the next he is screaming at you.

          Ah, but yes, I do hate the "You don't look sick" stuff when it is said to me in a quietly snide way like the above examples.

          There are times though, where people have really meant it in a nice way. For example, my pain management doctor said it, but she said, "You know, I don't know how you manage it... with all of these conditions, with all of the pain, you still get up in the morning, you make yourself look lovely, and go to work every day. I don't know if I could do it. I admire that. I'm proud of you."

          My father has also said, while here over Christmas, that I was looking good when I complained I've put on weight due to meds... he said one would hardly know I was sick, all the while vacuuming the living room for me because he knows how much it hurts my back and bladder when I vacuum.

          THAT kind of "you don't look sick" comment I can deal with... because it comes from understanding and caring hearts rather than from hearts that don't know and don't even WANT to know.
          ****
          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


          • #6
            Yes I know exactly what you mean, I often reply something like, I do? I am? really??? in a voice of shock and confussion! Most people that know me have learned to ask how I am feeling or doing instead since I may drag myself out and try to look good and be happy but that doesnt tell the whole story!!!
            Faith, Hope, and Love,
            Katrina


            I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            or find me on facebook http://www.facebook.com/kat671?ref=profile
            Be the Miracle! & Pay it Forward!

            [email protected] please contact me...I am here to help!

            Comment


            • #7
              I get that at work all the time. I would love to punch out 99.99% of everyone I work with.

              Erika
              IC diagnosed officially via cysto/urodynamics 1/26/07

              Grade II Endometriosis diagnosed via lap 12/11/07

              "Fall down seven times, Stand up eight."

              "Life is a tragedy for those who feel and a comedy for those who think."

              Current Treatments:
              Interstim Since 5/25/07!
              Birth Control

              Comment


              • #8
                i had diarrhea for like 4 months straight and so many people are telling me how good i look because i've lost weight
                i agree. i do look better ( i lost a normal amount of weight. nothing scary. just not in such a healthy way). but i don't feel better.
                i figure at least i'm getting something out of it... losing that 10 pounds i've been fighting! =]
                love.life.

                Comment


                • #9
                  Grrrrr.

                  What really gets me is when people say "Oh, well you used to be fine." No really! I had no idea?! As if they think I haven't noticed? It makes me feel worse when I remember what it was like to not be sick and not be in the bathroom 24/7.

                  Some people are so insensitive.

                  It's like when I had an eating disorder and people told me how great I looked. Once I gained the weight back because I was finally in a healthy state of mind everyone's like..yeahhh....she could stand to lose a few pounds. (About 20!)

                  Doctor's never believe me either. Well you look good TODAY. Today being the operative word. Tomorrow will be a different story. And then they don't want to give me pain meds because I'm all cheery and seem fine. Well I'm cheery cos I'm at the doctors who is supposed to help me!

                  Lol. This just turned into an angry little rant. But bleh, we all know what it's like now don't we. :'(

                  Kitty

                  Kitty!

                  Just diagnosed w/PFD - Oh Boy!

                  What I have tried: Elmiron, Lyrica, ,Methadone, Vicodin, Norco, Cystoprotek, imipramine, xanax, hydroxizine, trazadone, a bunch of anti-spasmotics and more I'm sure I can't remember.

                  What I'm presently on:
                  Noritriptyline 25 mg
                  OxyContin 20 mg AM - 10 mg afternoon - 20 mg PM
                  Zanaflex 2 mg at bedtime
                  Percocet PRN for breakthrough
                  Zyrtec
                  Nasonex (allergies)
                  Jolessa (b.c.)
                  Physical Therapy 2x weekly

                  Be my buddy?

                  http://www.facebook.com/home.php?#/p...88&ref=profile

                  Comment


                  • #10
                    ahhh. i swear my best days are days i'm going to the dr. and they think i'm crazy! or lying. =/
                    like last time i went i told her i'd been doing pretty good. no unbearable pain for a couple weeks she said oh okay good, i'll see you in 3 months.
                    and the next day was a flare! a bad one too!
                    love.life.

                    Comment


                    • #11
                      I hate that! Well you look great so you must be better! Yeah right! If only they had a clue as to how bad this is! By the way, I just voted for you! I hope you win! Good luck!

                      Comment


                      • #12
                        I also get infuriated when people tell me that I look healthy so I cant possibly feel that bad. I mean when My mom was Dx with terminal liver cancer, you would never have known it by looking at her, yet she was very sick obviously. People are so stupid sometimes I have to laugh at them.
                        I also lost like over 35 lbs in just a few months due to a digestive disease I have and I had people tell me how lucky I was that I was losing weight. Not really lucky for me as I was not getting enough nutrients at the time.
                        I think people just dont think sometimes before the speak. They have no clue that they are insulting us, as they think they are complimenting us. I find that it is just easier to ignore them and just smile and say nothing. It is not worth trying to explain myself because in the end, they likely still wont get it.
                        I also read the book " you dont look sick". It was really good. I recommend it. It is so true.
                        Jen

                        Comment


                        • #13
                          I can relate.

                          I went to the uro after I started meds, told him they wern't working. He didn't beleive me becuase it was the fisrt appt. that I wasn't crying for. I had it. I went for a second opinion, and it was really one of the best things I have done for myself in my whole life. If your doctor doesn't beleive you, go to someone else. Co-workers are buttholes, and they will never be nice and that you can't help, but doctors are up to you...

                          Erika
                          IC diagnosed officially via cysto/urodynamics 1/26/07

                          Grade II Endometriosis diagnosed via lap 12/11/07

                          "Fall down seven times, Stand up eight."

                          "Life is a tragedy for those who feel and a comedy for those who think."

                          Current Treatments:
                          Interstim Since 5/25/07!
                          Birth Control

                          Comment


                          • #14
                            WOW, I didn't mean to start a rant and rave. But it really does help to have others who have been there and completely understand. I love reading the other comments and know I have friends here who feel the same way.

                            BTW, thanks so much for the votes. You can vote everyDAY! Plus you get a chance to win $250 in cash just for voting. I really want some flowers to cheer me up on those bad days.
                            ~Laura

                            There can not be a crisis next week. My schedule is already full.

                            March 2006 IC tested positive

                            current treatments for IC:
                            Zoloft 100mg
                            Prelief
                            tramadol hcl 50mg (4-8 per day)
                            diphenhydramine (1 nightly)
                            elavil 25mg, Just started Nov 11

                            additional meds for pain if needed:
                            darvacet
                            loratab
                            percocet
                            tried Elmiron for over year and didn't see much of a change, gained weight

                            Also take Lisinolpril for high blood pressure

                            Other conditions:
                            IBS '93
                            depression '94
                            stomach ulcers '95
                            Mitral Valve Prolaspe Syndrome '01
                            Migraines since childhood
                            Chronic Fatique '03


                            It's not the number of years in your life that matter but rather the life in your years.

                            Comment


                            • #15
                              People dont understand unless they go through it I guess.

                              Comment

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