What if you woke up one day and were told you had an incurable disease? Not only that, but that your life would never be the same again. You would find ordinary, every day tasks exhausting, mundane activities painful, and lose your social life as you know it.
That’s the story of over 50 million Americans, and millions more in the UK who are literally unaccounted for because we live in a world that has a limited understanding of what it means to be ‘sick’. This world excludes what’s quickly becoming the majority of the population.
We no longer live in a world where the opposite of good health is sickness. The progressive rise in Autoimmune Conditions which supersede that of heart disease and cancer combined, (22 million and 9 million respectively in the US) are both relatively unnoticed and unacknowledged in the public domain.
Most Autoimmune Conditions are invisible on the outside, chronic and incurable. Perhaps because these diseases are not immediately fatal, you’re not stricken by a sense of urgency, but for those living with such a diagnosis, it might as well be. Not being able to maintain energy levels, coping with chronic pain and the variety of other symptoms that come with an Autoimmune diagnosis, are symptoms that also reflect the strains of modern life; fatigue, aches and pains - so perhaps it’s easier not to take them seriously.
Unfortunately, there’s a very real social and economic impact of ignoring incurable conditions that we should all be concerned with; the NIH in America attributes direct health costs from Autoimmune Diseases in the range of $100 billion. No figure could be found for the UK, not because it isn’t an issue, but simply because it is not acknowledged enough. However, there are over 5 million people in the world living with IBD alongside Rheumatoid Arthritis costing the NHS over £8billion and that’s just two of the 80-100 different types of Autoimmune Conditions that are recognised today. It’s safe to say that ignoring invisible diseases is only making life harder for all of us.
And that’s not accounting for the number of people unable to participate in daily social activities or continue to work because invisible Autoimmune Conditions aren’t adequately represented within Disability/Equality Laws.
So what can we do about it?
Let’s take the three strands touched upon above:
Working is about much more than enhancing our professional lives, it gives meaning to our life as a whole, yet the overarching symptoms across most of the Autoimmune Conditions are chronic fatigue and pain.This makes the 9–5 working system a challenge. You can find some impressive stats on how remote working makes employees happier, more productive and is a much more inclusive choice, but we’re far from making remote working the norm, let alone an option for those unable to participate in the 9–5 grind.
Accessibility is a big issue and one that most of us stop to consider at some point, yet seldom do we pause and ask, is this notion of accessibility truly inclusive? For those with Crohn’s Disease or Ulcerative Colitis who look completely well on the outside, disabled toilets are essential. Or for those with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), disabled seats are not just appreciated but very much needed. A rethinking of accessibility and how we design social spaces has been long overdue.
In relation to the first point about work, the economic impact we’re failing to see is simply insane; dialogues around disability and benefits are often one-sided, and they do not take those with invisible, chronic disabilities or those living with Autoimmune Conditions into consideration. If we could create better systems and policies which will accommodate those who have the potential to participate in a working environment, perhaps we could also be more attentive to those who cannot work at all.
The binary of healthy/unhealthy simply does not hold true anymore. How would you account for someone with Crohn’s Disease who is medically asked to not eat any fresh fruits or vegetables? Or factor in the effects of Multiple Sclerosis (MS), which can affect the brain, the eyes or the spinal cord? The most striking variable in Autoimmune Conditions is that each diagnosis manifests in its own unique way with every individual. This challenges the traditional understanding of illness as something that comes with a set of precise symptoms which can be cured by an equally predefined set of medications.
We can either throw in the towel and continue to ignore progressively rising demographics, or begin looking at health as a spectrum rather than binary. If you ask anyone with a chronic, incurable condition they’ll tell you they have good days and bad days, and the shifts between such days are drastic and unpredictable. This understanding could force us to reimagine health as a spectrum where you travel along the scale horizontally rather than in a hierarchy.
Recognising the nuances which make up chronic health conditions demands a new definition of health; one that doesn’t stigmatise or ostracise those who cannot do everyday tasks because they are at a certain phase within the spectrum which doesn’t allow them to ‘be normal’ right now. Perhaps notions around normalcy are the real culprit here, but that’s a discussion for another time.
By reconceptualising how we understand health and breaking away from ideas of ‘what’s normal’ I hope we can discover the true meaning of being an inclusive society.
Are you interested in learning more about Autoimmune Conditions and how you could help make a difference? Please visit The Invisible Labs; a social tech initiative dedicated to creating better solutions for those living invisible lives.
We’re also really excited to see how we could come together to create social impact along with The RSA. We’re looking for a wide a range of people to be part of the conversation - you could be a medical expert, a patient, or someone interested in progressing social causes. If you are curious about this issue, we want to hear from you. Please get in touch with me at firstname.lastname@example.org.