What it's like to be diagnosed with a rare illness - My NHS love story.

in #health8 years ago

There is currently a lot of talk going on about young doctors and the potential privatisation of the NHS, and it has made me think. I've been thinking about how grateful I am to the NHS and the UK healthcare system. Maybe I wouldn't even be sitting right here, right now, if it wasn't for the hard working nurses and doctors. I owe them.

When I was in my early twenties I was living away from my home country, I was fairly settled in my new city and had just started a new job. Life was good, but I was a bit run down due to some emotional stresses, so I did not think much of it when my legs and eyes began to ache. You may be familiar with how you feel when you get the flu - achy, tired, slow - that was me.

After a few weeks I moved to another department, and I was still not feeling great. Then, I got a sore throat, high fevers that came and went together with a raised red rash, a one sided sore throat and severe joint pains. I could even set my clock after my fevers, as they came on at 3pm and 10pm, but in between these times I could be feeling fine! It obviously wasn't great. Off I went to my GP to see what was going on. The first GP I saw thought I may have had something viral together with an allergy of some sort, so he gave me some steroids. Great, they worked! Until they ran out... I was having trouble working as my fevers would come back every other day and they left me sitting shivering in the back office. So, off I went to the GP again. This lady locum doctor was different, she really wanted me to go to Rheumatology. "Rheumatology? I don't have arthritis?" I thought. So when I felt a bit better again I cancelled my appointment with this department I had dismissed as being only for the elderly. But, the lady locum called me and insisted that I went to see them - I know now that she must have seen what I had before. And I am forever grateful to her, as I believe she saved me from a lifetime of pain.


Image from stillsdisease.org

As it turned out, I had a rare illness called Adult Onset Still's Disease (AOSD), which (depending on the source) affects 1 in 100,000 - 1,000,000 people. I didn't leave my bed for 3 weeks at one stage. I had no idea it existed before then, I had no idea what the future held for me and it was very hard for someone in their early twenties to not have the strength to do 'normal' things without getting exhausted. AOSD can potentially become chronic, and it can at times affect your heart and lungs and even take your life. But I was one of the lucky ones.

Now, this isn't a pity party - this is about how thankful I am that they made me better - although it took years of low dose chemotherapy for me to go into remission. (Wohoo! Remission!) The early diagnosis and treatment was what made it possible, and I doubt I would have been so lucky without the NHS and the lovely people I have met who work within the organisation. I especially wish that I could tell the lady locum how grateful I am. I do live with the knowledge that it can come back at any time, but now I am armed with knowledge and experience which makes me that much stronger.

And this is why I raise a glass to the NHS, and I pray to the forces that be that it will survive politics, Brexit and financial restrictions. Had I been living anywhere else in the world, my life could have been very different indeed.
Considering I was a human pin-cushion for a while due to the rare nature of the disease, had I lived in the US I would have forked out between $100 and $3000 every time I did blood tests, perhaps averaging at around $1500 per appointment. Had the NHS has been private at the time, I could have been out of pocket by several hundreds of pounds every time I visited. Money I definitely did not have. Instead I only paid £4.00 per prescription and I am not drowning in debt.

NHS - You're awesome, and don't let anyone tell you otherwise!

Sources:
http://www.walkinlab.com/blog/cost-blood-work-without-insurance/
http://www.homerton.nhs.uk/media/174141/1251-private-patient-tariff-for-2014-15.pdf

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Hope you fully recover and find the source of your illness. NHS and the working staff are great, they are underfunded and overworked. There seems to be a trend of adding more managers on a large salary rather than hiring key staff, the increased cuts probably don't help either.

Thanks! I'm all better and off all meds since a few years back - which I am so glad for. Forgot to mention in the post that many people go years without the correct diagnosis which is why it often gets chronic, and thanks to the locum GP that wasn't the case. I agree, seems to be the trend for most businesses these days in any shape or form to focus on managers instead of key staff!

Hi @swedoise, welcome to steemit.
My 2nd post here (long time ago) was about the NHS and i was asking how the world views it.
how-does-the-world-view-the-uk-nhs-service
As i said there i am super grateful to have the NHS and we really need to fight to keep it. I fear for its future in the current climate though.

Sorry to hear you have had a rough time of it though and im glad you are in remission. That must've been a tough journey and you are a strong person to have dealt with it so well. I lost my dad a few years ago to cancer and the chemo part was the thing that scared him the most.

Keep fighting mate!

Thanks for the welcome! I do fear for it too and I wish the trend eventually will be for it to improve rather than break at the seams. I'm sorry for your loss, and I hope the years have made it easier to bear and that you remember him fondly.