Friday, 2 October 2015

30 Things About My Invisible Illness You May Not Know

It's nearing the end of Invisible Illness Awareness Week 2015 and when I saw that Rachel over at Happy Little Syllables had posted this meme about living with an invisible illness, I had to share my story too. Invisible Illness Awareness week started on the 28th September and ends October 4th.
Many of you know that I'm disabled and raising awareness is very important to me. I use walking aids and a wheelchair most of the time but on my 'better' days, my chronic condition resorts back to invisibility and people think I've been miraculously cured - no, guys, just having a good day for a change. Anyway, let's get this thing started.

1. The illness(es) I live with is/are Ehlers-Danlos Syndrome, Fibromyalgia, Postural Tachycardia Syndrome, Depression and Anxiety (amongst other things).

2. I was diagnosed with it in the year 2006

3. But I had symptoms since I was a child, which gradually got worse in 2000.

4. The biggest adjustment I've had to make is relying on somebody else and losing my independence.

5. Most people assume that I'm lazy or a scrounger.

6. The hardest part about mornings are everything...the exhaustion from not sleeping the night before, the stiffness, the agonising joints, the heart palpitations.

7. My favourite medical TV show is Greys Anatomy.

8. A gadget I couldn't live without is my iPhone; the Spoonie support on Twitter is amazing. But my TENS machine is incredible too.

9. The hardest part about nights are painsomnia - being so exhausted and in so much pain; clock-watching for the next time I can take medication.

10. Each day I take 34 pills.

11. Regarding alternative treatments I don't believe in them; give me my prescription.

12. If I had to choose between invisible illness or visible I would choose visible - mine is much more visible now, I use crutches and a wheelchair.

13. Regarding working and career: I volunteer for the HMSA and Enhance the UK, I write my blog, I write fiction; if I could find a career I could do from bed, as and when, no set amount of time, I'd be up for that.

14. People would be surprised to know I wouldn't change a thing about my life; I'm in chronic pain and I'm not a fan but if it wasn't for my conditions, I would be a completely different person and I wouldn't know the people I do, I'd never change that.

15. The hardest thing to accept about my new reality has been limitations, I like to think I can do everything that a healthy person can, when in actual fact, I can't do half as much, I can't even wash my hair without wanting to cry.

16. Something I never thought I could do with my illness that I did was go to university, gain a BA and an MA.

17. The commercials about my illness are non-existent in the UK.

18. Something I really miss doing since I was diagnosed is playing tennis.

19. It was really hard to have to give up handwriting anything, holding a pen hurts so much and as a writer, that still eats me up.

20. A new hobby I have taken up since my diagnosis is blogging; I blogged a lot during my teens but this last year since I've finished uni and life changed, I've really got back into writing.

21. If I could have one day of feeling normal I would go bungee jumping - why not?

22. My illness has taught me how strong I am.

23. Want to know a secret? One thing people say that gets under my skin is - 'hope you feel better soon,' just no, I have a chronic condition, CHRONIC.

24. But I love it when people show empathy and see past the fa├žade of 'I'm fine.'

25. My favourite motto, scripture, quote that gets me through tough times is by H. G. Wells - I hope, or I could not live.

26. When someone is diagnosed I'd like to tell them that it's not the end, cherish your good days and don't dwell on the bad. 

27. Something that has surprised me about living with an illness is the online community, I can never thank my fellow Spoonies enough for how supportive they all are.

28. The nicest thing someone did for me when I wasn't feeling well was lie in bed with me, stroking my hair whilst I moaned and cried in pain - my boyfriend is the best.

29. I'm involved with Invisible Illness Week because I want to raise awareness.

30. The fact that you read this list makes me feel happy. If you did make it this far, thank you so much, I really appreciate it.

I hope this gave you a little insight into what it's like living with a chronic condition. 


  1. You're such a strong woman Sarah, even if I can't imagine not one little part of what you're going through I'm here if you need someone to talk to! :) xx

    1. Thank you so much, Caterina, you're such a babe <3 I really appreciate it xxx

  2. No 4 is a big one to get used. I had a genuine panic the other day as I thought my husband was away with work at the same time my parents are on holiday. It's saddens me sometimes that I'm almost 29 and rely on them so much, but such is life! No 5 is infuriating and shows why posts like these are important as there is so much ignorance. I obviously don't have all of the same diagnoses as you but no11 has been the most helpful for me whereas prescription pills have done nothing or made my situation worse. We are all so individual aren't we? But one thing for sure is that we are all a strong bunch :)


    1. It's so difficult having to rely on someone else, I hate it, I feel so useless.
      Exactly, everyone is different, what works for me may not work for someone with the same diagnosis. We are indeed x


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