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20 Things I Wish I Was Told Before I Left the Hospital With a Tough Diagnosis


I guess when you are diagnosed with a chronic condition, you don’t immediately have all the information you could really do with.You know what the symptoms are because that’s how you’ve ended up in hospital or the neurologist’s office, but you don’t really know what the future holds. I guess my onset was so sudden, so severe, that I just didn’t ever get the chance to imagine that I wouldn’t get better, and I never considered the impact it would have on my whole life and everyone in it.

I am nearly 11 years on from my diagnosis of transverse myelitis (a neurological condition that affects the myelin covering the spinal cord). Looking back at the 25-year-old party animal lying in that hospital bed with no feeling from the neck down, I’m shocked at how unruffled I was, how cool, calm and collected I was. I guess I just imagined it would all be OK, and within a few weeks, I’d be back on the dance floor, dancing the night away with my friends. Maybe that was the best way to think about it. Maybe living in a constant state of “this is only temporary” was the way I got through it day to day.

After 10 days in hospital, a crazy amount of steroids, lots of blank stares, and prods to my limbs, I was sent home with a wheelchair and a very heavy heart. I could see the worry and sadness in other people’s eyes as I tried to get on with things. I vividly remember trying to fold the laundry one day, but everything I picked up, I promptly dropped. At 26 years old, this is a massive reality check that I just wasn’t willing to deal with. I had lots of physiotherapy to help me walk. I saw the occupational health team who handed me special cutlery, a seat for the shower, a holder for my kettle so I didn’t have to lift it to make a cup of tea, and then they sent me on my merry way to a life that was unrecognizable to me. I have spent the majority of the past 11 years in between a state of anger and putting a brave face on. I guess I stopped waiting to get better and reality hit home.

I’ve recently had two years of feeling great, no relapses, getting to the gym, moving to the other side of the world to enjoy the sunshine and then bam… Another reality check. I been diagnosed with another condition I need to deal with. This means the sharks are circling again.

The doctor told me it’s really common that once you have one autoimmune disease, you are more susceptible to others. Who knew? Who kept this big secret from me? I listened to all her advice, took the appointments she had made me for all sorts of specialists and I started my walk back to the car. I was angry. I was deflated, hooked up to a heart monitor and I was thinking, “This is so unfair.”

Then I got to thinking what they really should tell you before you leave the hospital with a difficult diagnosis and a heavy heart. What they should tell you, and possibly tell you again so you really hear it, is:

1. You’re not on your own; there are many other people with the same diagnosis and they will become new friends and a huge support to you.

2. You will feel immense amounts of love from all sorts of people who want to support you.

3. It’s OK to feel the way you feel.

4. You will have good days.

5. Your children love you no matter what and you are not letting them down.

6. There are people who will drop everything just to run to your aid.

7. No matter how many times you have declined the offer of a night/dinner out, your true friends will never stop inviting you.

8. You can find kindness in strangers, lots of the time.

9. Your family will become closer than ever before.

10. You can find sheer joy in things that maybe seemed insignificant before.

11. You will know how loved you are through the kindness you are shown.

12. You must be kind to yourself.

13. You will become more aware of other people’s struggles.

14. You will become more compassionate.

15. You will learn to be more patient with yourself and others.

16. You will get used to asking for help, and your friends and family do not mind.

17. You can be happy.

18. You can travel.

19. You will get through the tough times.

20. You will still be you.

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