Invisible Illness Week: 30 Things

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Invisible Illness Week is 28th September – 4th October

1. The illness I live with is: Vulvodynia
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2010 (I’ve had glimmers since I was little but it’s been with me every day since 2010).

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4. The biggest adjustment I’ve had to make is: postponing finishing my studies so I can rest and take whatever medication I am told to without having to worry about my work suffering.  I also haven’t worn jeans or ridden a bike since 2012!
5. Most people assume: I am coping better than I am, because I usually manage to put on a brave and smiling face.  They don’t see the days I spend sobbing in bed because I hurt too much to do the things I planned.
6. The hardest part about mornings is: leaving my duvet.  I am only sometimes successful.  Being conscious that you have to get through another day of pain is really rubbish.

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Me, everyday

7. My favorite medical TV show is: I just can’t watch them – I switch the TV to escape from all the medical drama!
8. A gadget I couldn’t live without is: my laptop – it’s my lifeline to the outside world.  I can keep educating and entertaining myself with this amazing invention on my knee, from the comfort of my own home.
9. The hardest part about nights is: finding it hard to get to sleep when I’m so conscious of being in pain, or when I’ve been in bed all day anyway so I’m not as tired as I should be!
10. Each day I take 8 pills & 7 vitamins.

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Clue: it’s me.

11. Regarding alternative treatments I: used to be much more sceptical than I am now.  My Mum’s constantly finding new thoughts on Pinterest, and whilst I don’t follow them all, I am more open-minded than I used to be.  At the end of the day, if it helps, I’m game!
12. If I had to choose between an invisible illness or visible I would choose: an invisible illness I can choose to make visible.  Having a chronic illness makes you feel powerless, so having the ability to choose who you disclose your condition to, and when you do it, makes you feel as if you have a bit more control.  It’s nice to know that if people look at you on the outside, they might forget you’re ill – although, of course, it is saddening when you have to remind them, or fight to get them to believe it’s as serious as it is.

13. Regarding working and career: I used to have lots of dreams and ambitions but just recently I have had to rethink them all – a huge disappointment for a 22-year-old.  I am now embracing the idea of writing as a career, which, funnily enough, was what I first wanted to be when I was little…  I’m looking into how I can be freelance and my own boss, as my health is unreliable.
14. People would be surprised to know: sometimes I get really, really down and find it difficult to get out of bed.  This would probably surprise a lot of people that know me, because they only really experience my bubbly, social side – they don’t see the day-to-day struggle, which is emotionally and physically exhausting.

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‘sometimes I get really, really down’

15. The hardest thing to accept about my new reality has been: rethinking my future, including the possibility of having my own children.  I am prayerfully optimistic about finding a cure (…I have CHOSEN to be…) but the idea that my opportunities are narrower than I’d dreamt is a very difficult one to allow.
16. Something I never thought I could do with my illness that I did was: have (and keep!) a boyfriend!  He is so understanding – some days I’m just amazed he exists and that he loves me this much ❤  So have faith ladies – they’re out there!
17. The commercials about my illness: there aren’t any…
18. Something I really miss doing since I was diagnosed is: being active and spontaneous without having to plan ahead and making sure I’ve packed my pills…
19. It was really hard to have to give up: my previous conceptions of myself.
20. A new hobby I have taken up since my diagnosis is: Bible journalling.

21. If I could have one day of feeling normal again I would: have a MASSIVE party where I danced like a loon, stay up all night without worrying about the flare the next day,  then go on a bicycle ride at dawn in my jeans!  KERAZY.
22. My illness has taught me: the body is unbelievably, irrationally resilient.  You can survive more than you think you can.
23. Want to know a secret? One thing people say that gets under my skin is: “keep positive”.  I know you mean well, but you try keeping bloody positive when your body grinds and burns against you for 5 years straight with no day off…

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‘You just need to lighten up.’

24. But I love it when people: show they care.  A friend recently read through some medical journals and lots of Google articles to try and find some specialists that might be able to help me; that was one of the biggest demonstrations of care I have ever received.
25. My favorite motto, scripture, quote that gets me through tough times is: ‘Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.’ – Isaiah 41:10.
26. When someone is diagnosed I’d like to tell them: your life is not over.  Sometimes I find that hard to believe, but it’s true, and you have to know that to stay sane.
27. Something that has surprised me about living with an illness is: some of the people you thought were your friends will drop off the face of the earth.  For whatever reason – perhaps they have their own issues, perhaps they’re too busy, perhaps you were just convenient or entertaining for them for a while – I have found great strength in shaking the dust off from these relationships.  That has been a surprising perk of this journey, actually!
28. The nicest thing someone did for me when I wasn’t feeling well was: When one of my girlfriends found out I’d be staying at home to recover, she sent me a ‘survival package’ with a colouring book, face mask, nail polish, bubbles and Earl Grey teabags, as well as some other goodies!  The card said, ‘rooting for you always.’  That made me feel so loved and special, and not alone.

29. I’m involved with Invisible Illness Week because: not enough is known about invisible illnesses, and they can be incredibly isolating.  The more people share about their invisible illnesses, the less lonely we will be able to feel.
30. The fact that you read this list makes me feel: honoured that you’ve taken the time to hear me.  Thank you!

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