30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:

– Ehlers Danlos Syndrome (EDS)

– Fibromyalgia (Fibro)

– Chronic Costochondritis (Costo)

– Raynauds Phenomenon

– Probable Gastro oesophageal reflux disease (GERD)

– And I also have Gallstones at the moment

2. I was diagnosed with it in the year:

EDS – When I was 10

Fibro – Last year

Costo – This year

Raynauds – A few years ago

GERD – In the process of diagnosis

Gallstones – Last month

3. But I had symptoms since:

I was born. I was always complaining of pain as a child but no one knew why. Doctors kept telling me I had having growing pains, bone cancer, leukaemia, just wanted attention, my mum had munchausen by proxy and was making me ill and several others before I was finally diagnosed.

4. The biggest adjustment I’ve had to make is:

Learning that I cant do as much as others and that resting isn’t me being lazy. I struggle to know that I can’t do as much as I would like because my body just can’t keep up. I’m always over doing it and I suck at pacing.

5. Most people assume:

That there is nothing wrong with me or that it’s not as painful as it is as I look healthy, still go to uni and try to lead as normal a life as possible

6. The hardest part about mornings are:

Everything. Waking up, moving, getting out of bed, getting dressed. It doesn’t sound like much but it is so exhausting. Healthy people don’t understand why I find mornings so hard but all that energy needed when you’ve only managed a few hours of actual sleep is really difficult.

7. My favorite medical TV show is:

Grey’s anatomy.

8. A gadget I couldn’t live without is:

My iPad. I can keep in contact with friends when I’m having a bad day and can’t get out of bed and the chronic illness community is amazing and always there to offer support and virtual hugs. Its also something to play silly games or watch films on when I can’t concentrate on anything else and is lighter than my laptop.

9. The hardest part about nights are:

The insomnia. Not being able to sleep even though you are too exhausted to move is so hard. Knowing that you have to get up & function in a few hours and you still haven’t had any sleep is horrific. Also not being able to get to sleep because you can’t find a comfortable pain less position to sleep in is horrible.

10. Each day I take __ pills & vitamins. (No comments, please)

18 pills and 0 vitamins

11. Regarding alternative treatments I:

have tried acupuncture and loved it. I really want to find somewhere to get it again.

12. If I had to choose between an invisible illness or visible I would choose:

Invisible because even though its hard when people to struggle to understand, some days I can pretend to be healthy.

13. Regarding working and career:

I would love to be a Dr but I’m really not sure whether that will ever happen. I am currently in my 3rd yr studying Biomedical Science but I’m doing it part time so it will take 2 years

14. People would be surprised to know:

That I can’t remember the last day I had where at least one of my body parts didn’t hurt

15. The hardest thing to accept about my new reality has been:

Having to change my dreams.

16. Something I never thought I could do with my illness that I did was:

Get a B in 3 A levels and go onto uni.

17. The commercials about my illness:

There aren’t any,

18. Something I really miss doing since I was diagnosed is:

Not really since I was diagnosed by since my health declined, going for a walk where I actually get to walk instead of use my chair and riding a bike. I used to love bike rides.

19. It was really hard to have to give up:

My horse. He was my baby and I miss him everyday. I would love to own another one

20. A new hobby I have taken up since my diagnosis is:

Blogging and I’m trying to take up photography.

21. If I could have one day of feeling normal again I would:

Probably go on a day out with my family where they don’t have to go home early because I’m ill or spend their day worrying about whether Im okay.

22. My illness has taught me:

To treasure the small things, not take your body for granted and that my family are the best in the world

23. Want to know a secret? One thing people say that gets under my skin is:

“You’re too young to need that wheelchair”

Strangers coming up to me and bluntly saying “Were you in an accident, what happened? what’s wrong with you?”

“But you look so healthy”

Talk to me like I’m a child or deaf. I know that’s more than one but I couldn’t decide.

24. But I love it when people:

Treat me like the adult I am and include me even when I make things more complicated by being in a chair

25. My favorite motto, scripture, quote that gets me through tough times is:

“Life’s not about waiting for the storm to pass it’s about learning to dance in the rain”

26. When someone is diagnosed I’d like to tell them:

There is an amazing community online where you can make many awesome friends

You know your body best and Drs aren’t always right so get a second or third opinion if you think there is something extra

Drs tend to try and pin everything on EDS even when there is quite often secondary problems

Don’t be too stubborn you could do yourself damage

Having a day to rest and do nothing is not being lazy it’s essential to your health

Buy lots of cushions, ice packs, hot water bottles

A shower seat is always a good idea

Don’t be too proud to accept help

27. Something that has surprised me about living with an illness is:

How judgemental people can be but on the other had it also showed me that there are still amazing friendly helpful people out there.

28. The nicest thing someone did for me when I wasn’t feeling well was:

Cancel a night out to stay in and watch a film in bed instead, send me a teddy bear to cheer me up and so many more as I have amazing friends and family/

29. I’m involved with Invisible Illness Week because:

More people need to know that just because a person looks fine doesn’t mean they cant be in excruciating pain and need help. They are not lazy or making it up.

30. The fact that you read this list makes me feel:

So happy. Please help raise awareness by spreading it or making your own.



6 thoughts on “30 Things About My Invisible Illness You May Not Know

  1. Thank you so much for this post young lady! It definitely needed to be said, and said, and said, and said… So many just don’t understand! I miss my last horse too. I’ll be sharing.

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