This post is written in response to day 3 of the Daily Post Zero to Hero tasks.
I’ve seen this image going around Facebook a lot lately and it has got me thinking.
Since my crash in April last year, I have become aware of this large community that I didn’t even know existed before. The Spoonie Community is one that I’m finding myself relating to, and becoming involved with, more and more as I increase my attempts at raising awareness and understanding how chronic illnesses affect our lives. Although my obvious focus is on Myalgic Encephalomyelitis, Fibromyalgia and Pelvic Congestion Syndrome, I am recognising the similarities between the symptoms and issues I face with these illnesses and those faced by others in the Spoonie Community.
A big issue is the fact that awareness levels about chronic illnesses in the general public, especially illnesses with invisible symptoms, is low almost to the point of being non-existant. I don’t remember ever talking about chronic illnesses in school when we learnt about health related topics. There was information on acute and life threatening illnesses such as cancer, and some information on mental health and topics like depression, but nothing on chronic pain, brain fog and fatigue. This lack of information and awareness leads to a lot of negative responses to people who suffer from these illnesses, with comments like those in the image above that demonstrate a lack of awareness and belief in the reality of the symptoms these people are facing.
Some of the illnesses, such as Myalgic Encephalomyelitis, isn’t even widely recognised or accepted as an actual physiological condition in the medical community. People suffering with these conditions often have to face not just the constant and often extreme symptoms caused by their conditions, but the disbelief and lack of sympathy from those around them. Many are even treated like it is all in their head and told that the issue is psychological.
I believe that it is important that awareness of these illnesses be raised in both the general and medical communities. This awareness raising should begin in schools at a young age to increase acceptance and understanding in the community.
Today I am taking the day to focus on my personal visions of what a successful 2014 would look like for me. On top of the obvious answers such as increased or stablised health, returning to work in some capacity, and enjoying time with my family and friends, I believe there will also be a section in there on increasing public awareness of invisible illnesses to help increase acceptance and understanding. I already have some ideas on how I can do this and I will share them with you over the next few months.
To succeed in changing public perception I believe we all need to work together. There are already projects out there that are focusing on increasing awareness around particular topics, such asthe Canary in a Coal Mine film focusing on raising awareness of Myalgic Encephalomyelitis, that focus on engaging adults but from what I have seen so far there is still a gap in education that would be suitable for all invisible illnesses and all ages.