STIGMA

I applied to do a college course two weeks ago, swedish body massage...had a letter this afternoon asking for more information from my consultant so I rang the college and was asked mainly about the physical ability I have as would need to stand up to 75 minutes to do full body massage and also needed 4 case studies. I said if I rest up 24 hours before my class I will be able to manage..she insisted that it is very strenuous course and she needed to hear from my consultant that I would be able to complete it...she said she knew nothing about my conditions AIH/PBC so she googled them and found all sorts of information, mainly fatigue and weakness and yes I do have these, but not every day. She then asked about contact with the hepatitis...I said contact; she replied well hepatitis is contageous and the board of beauty therapies needs to know their clients are safe...I went ballistic saying I am not contageous,..hepatitis means inflammation of the liver not I touch you, you get me too lol....I said I am not contageous, what I have is autoimmune and you cannot catch it at all.

I gave her the british liver trust web site details and said you can check on here..what is it with the word hepatitis that people always seem to assume the worst.....I did not ask for these diseases, they came on out of the blue, one minute I was healthy and fit, the next I am not..I think something needs making more public about the stigma involved..I know our conditions are rare...but geeeese what happened to equality and diversity....just so peeved at all this. It also applies to working....I can no longer do care work because it is exhausting yes...but also because of the hepatitis stigma...we need to do something. BUT WHAT?

Sorry about moan but I think it's about time we were given a fairchance at normal life including work, college what ever we decide we would like to do.

xxconniefused

2 Replies

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  • She's clearly thinking you have one of the hepatitis viruses (A, B or C). It's unfortunate that people naturally make that association when they hear the word "hepatitis". I'm assuming it's because our condition is so rare and all you really hear about in relation to hepatitis are the viruses. I just always clarify that I do not have any of the viruses, and that the word "hepatitis" simply means "inflammation of the liver". I usually go on to explain that my immune system is attacking my liver, etc.

    It's very frustrating....I agree wholeheartedly. People also assume you are an alcoholic if you have liver disease...all sorts of stigma going on with this! Like having the condition doesn't suck enough.

    I hope everything gets sorted out for you, Connie and that you can pursue your goals!

    Take care,

    Karen

  • Definitely not a surprise with regards to the word hepatitis.

    Also there's the stigma if one just has PBC when you say what the abbreviation means. OK 'til you arrive at the 'C'. Could put a bet on that you are then asked how much you drink!!! This has happened to me twice at my GPs when gone for the bloods with the nurse!

    I don't know where you reside but here in England you don't have to actually state if you have 'something' that's not contractable. I was asked to return to a job earlier this year (I left 2009 before I got the itch in 2010 and then diagnosed with PBC) and because I knew my employers wasn't sure if I could actually return without mentioning I now had PBC. I rang ACAS up for guidance at the time.

    I suppose with regards to a course in college/uni depends on yourself. I know if it was me I'd probably not be inclined to state I had PBC as currently it is of no infringement on my day-to-day living, I just get nights when I itch but not every night. This is how I feel at present due to the fact that I know in my case I'd have to pay to go to college/uni if I attended as have in the past so it would be my loss.

    Good Luck.

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