by The Chronic Chronicles | Mar 18, 2014 | Awareness, Education
Let’s start with a fundamental truth: having a chronic illness sucks. There’s no denying that.
However, looking at the people I know who live with a variety of long-term conditions, a lot of them have developed certain skills that can help them.
When you have a chronic illness, your body often fails you. You frequently have to stop doing normal everyday tasks, activities and hobbies that you once enjoyed. Your illness can change on a daily basis, or even multiple times within an hour making it very difficult to plan anything in advance.
Resilience is defined as the “ability to spring back into shape and recover quickly from difficulties.” It’s something those of us with chronic illness have to do every day. Any day can bring a new symptom, a flare up or even a new diagnosis. We have to learn to live with that, and deal with our new circumstances, whatever that may be.
We’ve been dealt a certain hand of cards, and we can’t give up or take a break from it – we just have to keep fighting.
Strength is a fundamental facet of chronic illness. The strength to drag ourselves out of bed even when every cell in our body is screaming ‘what the hell are you doing?’ Or strength to put a happy face on when you’re meeting friends, or going to a family function. It takes a lot of strength to keep going, no matter how bad things get.
But there’s also the strength needed to advocate for ourselves – because even if you’re fortunate enough to have supportive family or friends, you know your body best and you will have to fight for what you need, often over and over, and have to be brave enough to ask for help when enough is enough.
Having a health condition means we need to become an expert in lots of different areas. Whether it’s our condition, treatment, benefits/welfare, how to obtain assistance, relevant laws and much more – we have to know it all! We’ve constantly got a new battle on our hands, as it’s rare help gets handed to us on a plate.
And having a rare condition brings added pressure, as we’re often also having to educate our doctors and medical professionals in what exactly our condition is in the first place (while trying not to annoy them!) before we’re even able to get onto treatment and management options.
Knowledge is vital for us to understand our own circumstances, and can also be very empowering.
Having health issues tends to open your eyes a lot more to other people’s struggles in a way you may not have even thought about previously. Compassion for other people comes more readily when you can relate to them due to your own experiences. Empathy is defined as, “The ability to understand and share the feelings of another.”
Chronic illness can cause an amalgamation of issues that aren’t just medically related, and it can make it easier to have an insight when other people experience their own difficulties.
In my own personal experience, I find when I mention I’m having a bad day, or share a fundraiser for a local charity – it’s my friends who have their own health issues who are the first to respond offering support.
Creativity comes in lots of different forms, from the traditional arts and crafts type, to the way you live your life. Through my own conditions I’ve tried to embrace my inner craft goddess, and discovered so many other people with disabilities also take part in similar pursuits. Perhaps because it’s a great way to distract yourself from pain, and also because enabling yourself to create something to be proud of brings a positive element to your life.
But creativity isn’t all glitter and glue – it’s also having to be creative with our own lives. You have to learn to think outside the box, find ways around issues and constantly problem-solve. The ways we used to do something may not now apply to us, such as hopping on a bus to go shopping. We may have to use our imaginations to devise easier and shorter routes, alternatives to carrying heavy items, and keep the trips out short and sweet to manage fatigue and pain. Instead of saying “I can’t do that” it becomes “How can I find a way to do that?”
If you know somone with chronic illness is having a bad day, why don’t you share this with them to give them a boost?
What would you add to this list? Please comment below with some of the skills you’ve gained, or skills that you see your friends/loved ones using.
by The Chronic Chronicles | Feb 28, 2014 | Awareness, Education
There are lots of these special ‘days’ – Talk Like a Pirate Day (19th Sept), Hairstyle Appreciation Day (30th April) and National Sandwich Day (3rd Nov) but a really important day for me is Rare Disease Day, which is today.
A disease is defined as a condition that’s abnormal, and affects the body of a living being.
Here are some facts about rare diseases:
- There are over 6000 rare diseases
- A disease is classed as rare if it impacts fewer than 1 in 2000 people
- 30 million people live with a rare disease in Europe
- 80% of rare conditions have a genetic origin
I have Ehlers-Danlos Syndrome, a genetic connective tissue disorder.
There are various types of the condition and the most common type is estimated to impact anywhere from 1 in 5000 to 1 in 10,000 and the least common types have only been diagnosed with a small handful of people.
Rare diseases are neglected – in research, care, NHS services and provision of medical expertise. There is a lack of understanding and awareness in every part of the medical community. But rare doesn’t mean we don’t matter.
While I had mild symptoms from birth, the real trouble started when I was 15 – and it took me another eight and a half years to be able to put a name to my pain, fatigue and countless other symptoms. I’m lucky – many others don’t get diagnosed at all. That’s why recognition is vitally important.
Many seeking answers are instead labelled incorrectly. The word hypochondriac sneaks into their medical notes. They’re told their attitude is too negative, or point-blank informed it’s all in their heads. People with the condition usually look perfectly healthy, which makes it even easier to get dismissed.
Some people don’t live long enough to have the reassurance of knowing they were completely right, and there was a reason they felt the way they do like in this awful story.
Once I knew what was wrong with me, it changed everything. I was able to look for the national charities, find other sufferers and do copious amounts of research. Everyone should be able to do that – and from as near to birth as possible. Simple changes like strengthening your muscles before they become locked in a cycle of spasms, wearing orthotics to protect flat feet and looking out for the myriad of complications that can arise from the condition can make a big difference.
Awareness for rare conditions isn’t the same as for many other conditions. To me it can be summed up in the conversation that usually goes,
“So what’s wrong with you?”
“Ehlers-Danlos Syndrome.”
And the response is a blank face.
I don’t expect people to know specifics – but if you said to someone you had MS, they’d probably at least gather it’s quite debilitating without having to try to explain further.
While that may not feel so bad – imagine that lack of recognition continues with your GP, your rheumatologist, physiotherapist – the people meant to be supporting your care, as well as everyone else. You have to spell the words out to them carefully, and they promise they’ll look it up – but yet the next time you see them they’re none the wiser, and you know they forgot to pop it into google. We deserve better, and it makes you feel very alone.
When I was diagnosed I spent an hour with the specialist consultant. He was the first person who nodded when I mentioned symptoms, and pointed out a lot I hadn’t even realised were significant. He literally started from when I was born onwards, and put together a pattern that led to my diagnosis.
However, an hour isn’t enough -not when you’ve just been diagnosed with a condition that impacts 95% of your entire body. Every organ, every joint. No one talked me through the heart issues, the gastrointestinal problems, bladder, muscle tone, nervous system, eye sight, breathing issues , and the terrible sleeping problems. No one told me that while you’re given a ‘type’ within the condition – there’s lots of overlap, and it’s mostly just guess work.
To this day I’m still finding new information, and putting facts together – and I usually find that out from other people with the condition, not a medical professional.
So this is what I want from Rare Disease Day…
I want every medical professional to have a brief understanding of the condition, and realise it’s only rare because they aren’t spotting all the undiagnosed people with it. Professor Grahame, a Ehlers-Danlos Syndrome specialist consultant carried out research that suggested “for every one person in England who is diagnosed by a rheumatologist as having hypermobility syndrome, there are probably 19 that aren’t yet diagnosed.” That’s around 85% of cases that are going untreated, being told it’s in their head, or being misdiagnosed. This has to change.
The most common sign of Ehlers-Danlos Syndrome is hypermobile joints – something that should be second nature for GPs/physiotherapists to have a quick look for if someone is presenting with wide-spread pain. I first heard the word hypermobilty from a physiotherapist I was lucky enough to come across. She asked me if I knew I was hypermobile, and I said I didn’t know what she meant. She explained it was also known as being double-jointed, but the only time I’d ever seen people mention that was when people did funny tricks with their hands. My hands looked normal. “Of course you’re hypermobile,” the physiotherapist said to me. “Just look at you, look at your toes, you just are!”
That’s all it takes. One person to have the knowledge. To be able to spot hypermobile joints, to notice the person with pain in every joint that is getting negative results to every test, to the person gesticulating with their hands as they speak, with bruises or injuries they don’t remember getting, that might be a bit clumsy. If you spot just one of those things, just have a think about mentioning Ehlers-Danlos Syndrome and you might change someone’s life.
