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  • Social life!

    How do you all deal with the social aspect of IC and/or other medical problems? I sometimes am afraid no one will ever want to go out with me because of this - I mean, even my friends don't want much to do with me now. It's starting to feel hopeless. Anyway, it's hard to meet people when you're not in school and can braely leave the house!
    Any ideas/suggestions?

  • #2
    Like you, I am not "in" school, so I understand your feelings. I have five good friends, three of which I met just as I was becoming sick and was in the process of being diagnosed with fibromaylgia (as I was just starting high school). Luckily, they have stuck with me. I have never hid anything from them, they understand what is going on and know if anyone asks at school about me they tell them. When they go out, they call me, even though there are many times I cannot go. Sometimes when I can't go, they will being over a movie and sit with me. Even though they are good to me, it is hard all the things I am missing.

    E-mail me if you need someone to telk to.

    ([email protected])


    • #3
      Hi there! I was curious, you both mentioned not being in school...does that mean you are homeschooling or how are you continuing your education???? Hugs, and GLAD to have you all here! Love Julie B
      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!

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      • #4
        Julie B -

        For high schoolers, there's really no such thing as homeschooling where I live (NF, Canada). We've looked into it, but it isn't possible for several reasons. (teacher shortages, huge expense - over $1000 a month and government pays only $150, not many courses available that way...) I'm hoping to attend the hospital school next year, but this year they aren't offering high school courses.

        Up until recently I was too sick to do school at all - home or otherwise, as I literally could not leave the bathroom for more than a few minutes at a time. (I have actually tried reading in the bathroom, but it's not the most comfortable place to study!)

        It's so late in the school year, there's no point in getting tutors (even if it was possible) when I am already half a year behind (we have to write exams at set times, no special exceptions) I couldn't possibly cover a year long course between now and June! I'm trying to do language, and maybe a couple of other courses if I can, on my own, so I won't have *quite* as much to make up later. But I will basically have to repeat this year, do an extra year of high school. I hope they have it at the hospital because even when I'm "well" it is very hard for me to go to my regular school (there's only one bathroom). I will have to go to public school for some courses, though. With homeschooling and hospital school, you can only get 36 credits which isn't enough to get into university.
        I'm trying to make the best of it... Being sick, school-age, and living where I do, is pretty hard. They sure don't make things easy for us!
        Oh, and I think Amanda is homeschooled.


        • #5
          Hey Drama.. Well i have a b/f note the user name.. hehe! And sometimes it is very hard but he understands when i start hurting that i am really hurting. You may think you will never have anyone who understands but believe me there is someone out there god made for you and he knew you were going to have this. So that means the man will be able to understand. So dont get to depressed. And about hanging out with friends and stuff. Maybe you just hvent met the right friends that will be able to hang with you when you cant go out. Well I gtg.. WB Love jenn


          • #6
            Hi Jenn,
            I'm glad you have found friends and a boyfriend who are supportive of you, you are very lucky. I live in a small place so its hard to meet people under the best of circumstances (I consider this near the worst!) I will have to get better than I am now to meet anyone, as I am totally housebound ( more often than not bathroombound, cannot leave the bathroom, as I like to call it) and I cannot even ride in a car. Getting to drs appointments is a challenge! Later in life, I hope to get married, sex is impossible for me because of severe vulvodynia in addition to I'm not sure there are any guys out there who'd want to marry me, but as you said, there is one...somewhere?...
            Enjoy your great friends! Someday if I get better enough to go out I may meet some great people like that too!


            • #7
              I think with this disease it can be really hard to meet new people and hence make new friends... I spend a lot of my time being held hostage by my toilet, so even though I go to university, I never meet anyone... I think generally IC can make you feel really isolated from the world... but if I find any great ways to make new friends (beyond the computer world) I'll be sure to let you know!

              All obstacles in life are mere opportunities.

              - Jesper Larson, Danish Mathematician