A 19 Year Old Living with Arthritis...an Invisible Condition

AmberMehmood
AmberMehmood Member Posts: 2
edited 11. Dec 2017, 07:02 in Living with Arthritis archive
Hi everyone,

My name is Amber and I am 19 years old. For over 16 years I have been suffering from Juvenile Idiopathic Arthritis. Years of treatment and medication have failed in controlling my disability. Everyday can be a struggle... with extreme pain and stiffness.

Living with arthritis since a young age has meant I have been in many different situations and experiences.

I have created a short podcast where I talk about my invisible condition and how people can misjudge you.

Please comment under my podcast for any constructive feedback you might have! Thank you :)

http://mhm.hud.ac.uk/planetradio/node/827

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Amber and welcome to the Arthritis Care Forums.

    What a fantastic podcast! Hoping that not only our members will comment but that they use social media and other outlets to get your message out.

    It would be lovely to see you posting on our forums :)

    All best wishes
    Brynmor
  • Airwave!
    Airwave! Member Posts: 2,431
    edited 30. Nov -1, 00:00
    Don't do public media, as such, the ethos was different when I was young, even at 60+ I know I'd get a lot of raised eyebrows, I don't say that it was right but thats how it was.
    Thankfully in my early years the soreness and aches were just that and I was 25 before a doctor told me what was going on and arther was about.

    Good luck.
  • mermaid
    mermaid Member Posts: 104
    edited 30. Nov -1, 00:00
    What an excellent podcast Amber, so clear and articulate and you really get the message across. My heart goes out to you dealing with arthritis from such a young age. I was in my 20s and remember being in hospital with children with arthritis, it's so hard, especially for teenagers when you are striving for independence.. Well done for doing this, I really hope many people will hear it and be more informed and understanding. Take good care xxxx
  • Babsb
    Babsb Member Posts: 26
    edited 30. Nov -1, 00:00
    Bless you. I have a niece who is like you. I also have arthritis so understand your pain. I never comment on someone using a disabled bay as long as they show a badge because as you say it does not show how someone is struggling. Your podcast is great and hopefully will let other people know what a struggle it is. babsb
  • jennand
    jennand Member Posts: 130
    edited 30. Nov -1, 00:00
    I have used various responses to people who who comment when I use my blue badge ( I don’t always use it, particularly if I’m having a “ good” day ). Sometimes I just ignore them especially if it is just a look they give me. But if they actually say “ You don’t look disabled” ( and that has been said to me) I now respond with “ well, you don’t look stupid either, but it just goes to show doesn’t it?” My husband thinks I shouldn’t provoke anyone like this but if I’m in pain it irritates me when people can’t see this.
  • stickywicket
    stickywicket Member Posts: 27,230
    edited 30. Nov -1, 00:00
    Ooh jennand, I like that :D There are actually stickers you can buy saying 'stupidity is not a disability' but I think your husband is right - safer not to provoke them.

    As you can see, Amber, the BB issue is a regular one on here.

    From the URL you give I'd guess you are a student at Huddersfield University hoping to raise awareness among fellow students. I wish you well though the cynic in me says that none of us really understands another person's 'invisible' illness or disease until / unless it hits us personally. Well done you for trying to enlighten people though. Have you read The Spoon Theory? (Just google it) That provides a good explanation of how it is living with arthritis.
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