Recently I put in a ‘wish’ on the website ‘Crowdwish’ saying that ‘I wish people would try to understand and empathise with those who have invisible illnesses’ and I was delighted on Sunday to learn it had been actioned.
I’d written a little about how I felt along with the wish and I’ll repeat it here.
People with Myalgic Encephalomyelitis (ME) and other invisible illnesses are repeatedly judged and dismissed as not having a real disability. The media and some in the medical profession are so dismissive of this serious condition and even worse some cause direct harm to patients by enforcing dangerous and harmful treatments. The media influences public perception of ME and this in turn leaves patients with no family support or help from their GPs.
If only more funds were made available by the medical establishment towards biomedical research then it could be proven that it is an illness that affects the neuro/immune/endocrine/cardiac systems and has a devastating effect on millions of sufferers worldwide. People are left with no adequate treatment and many are bedbound, tube fed and unable to function independently. With proper research these people could regain their lives, their health and their dignity.
Patients have set up a charity since 2011 and are raising funds. Its called Let’s Do It For ME and have so far raised £279,000 towards research by Invest in ME. Their website is here: http://ldifme.org
I was really happy when Crowdwish got in touch and even more so after reading what they’d written back.
“Today’s Crowdwish was ‘I wish people would try to understand and empathise with those who have invisible illnesses’
Invisible illnesses are those defined as having little or no external manifestation – sufferers may appear ‘fine’, but in reality might be afflicted with any one of a number of conditions, all of which severely impede their ability to live a straightforward ‘normal’ life. Typically neurological in nature, these illnesses include, but are not limited to, conditions such as :
Chronic fatigue syndrome
Chronic pain disorder
Severe Myalgic Encephalomyalitis
Many of these issues come grouped together – for example ME sufferers will often also experience pain, digestive or neurological impairments in addition to their ‘core’ illness.
Because they have no outward manifestation, it is extremely easy for sufferers to be considered essentially well enough to function; as a consequence it can be very difficult to have the condition taken seriously, receive appropriate care or disability benefits and have the world understand that these kinds of illnesses are just as debilitating as something with a clear external appearance, such a broken arm or leg.
Often they can in fact be more challenging – for the individuals concerned these conditions are incredibly oppressive and frequently imprisoning. Energy is an extremely finite resource that must be carefully measured and judiciously expended. Conserving the amount of stamina required for ‘simple’ activities like shopping or meeting a friend for a drink can take days. They may struggle to work, to attend school or college, socialise with others; even a short walk can become an enormous effort.
This is a condition that robs people of the ability to function in the way that the rest of us take for granted, steals energy and self-belief but is frequently misunderstood, ignored or just regarded by many as ‘tiredness’.
The individual who made this wish has herself suffered with ME for a number of years, yet has worked incredibly hard to raise awareness of invisible illnesses through her honest writing highlighting the many injustices both social and political that accompany these conditions.
We’re sending her a gift privately to hopefully make a tiny contribution towards elevating the quality of her day-to-day life.
You can discover how to help here.
Imagine my surprise when this morning a lovely item arrived in the post. It’s a print out of a beautiful starry sky saying “Hey Carole Carrick, Always remember this” along with an Oscar Wilde quote:
“We are all in the gutter, but some of us are looking at the stars.”
It’s perfect for framing and hanging on my bedroom wall but I’m going to incorporate it into my fabric journal that I’ve begun to fill at last along with the ‘Documented Life Project’. It’ll go perfectly in there. I’ll let you see it when it’s completed but here is the cover for now. 🙂
Now these folk at Crowdwish are seriously thoughtful indeed. There’s one thing talking about helping people to achieve their wishes and dreams but another to actively create joy and hope in someone’s life and they have certainly done that for me with all the above. There is a wish fulfilled every day from large to small. It’s a really wonderful idea and something that lightens my heart knowing that there’s people out there with such good intentions and open hearts.
Thank you again Crowdwish…you couldn’t have made me any happier!
If you’d like more information on Crowdwish or just want to join in go here.