20 things I wish I had been told when I was diagnosed with a rare disease
Last Reviewed 30/05/2017
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, but you don’t really know what the future holds. My onset was so sudden, so severe, that I 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 twelve years on from my diagnosis of Transverse Myelitis (a very rare 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 okay, and within a few weeks, I’d be back on the dance floor, boogying 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.
Massive reality check
With barely any feeling from my chin to my toes, I was sent home from hospital 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 25 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 unrecognisable to me. I have spent the majority of the past twelve 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.
Coping with change
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 have 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 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 thinking “this is so unfair”.
This got me thinking about all the things I wish I had been told before being sent home. Before I left the hospital with that difficult diagnosis I wish someone had taken my hand and said:
You’re not on your own; there are other people with the same diagnosis and they will become new friends and a huge support to you.
You will feel immense amounts of love from all sorts of people who want to support you
It’s OK to feel the way you feel.
You will have good days.
Your children love you no matter what and you are not letting them down.
There are people who will drop everything just to run to your aid.
No matter how many times you have declined the offer of a night/dinner out; your true friends will never stop inviting you.
You can find kindness in strangers often.
Your family will become closer than ever before.
You can find sheer joy in things that maybe seemed insignificant before.
You will know how loved you are through the kindness you are shown.
You must be kind to yourself.
You will become more aware of other people’s struggles.
You will become more compassionate.
You will learn to be more patient with yourself and others.
You will get used to asking for help and your friends and family won’t mind.
You can be happy.
You can travel.
You will get through the tough times.
You will still be you.
Olivia is a thirty something British mum of two. Having been diagnosed with Transverse Myelitis at 25 and struggling for more than eight years to regain some sort of normality, her family decided that they would bite the bullet and go on an adventure to Australia! She hasn’t looked back.
Olivia thoroughly enjoys the adventures that come with a fairly nomadic life overseas, and has learnt to accept and be very aware of her limitations that come with TM.