Tomorrow, Friday 12th May 2017, is International Awareness Day for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. For more information about ME/CFS, see the links at the bottom of this post.
If you see a person with myalgic encephalomyelitis or chronic fatigue syndrome, it probably means that they are having a good day. For you to see them (unless you are a very close loved one, carer, or health care professional), they must have been able to leave their bed or sofa today. It might be their one good hour, or even minute.
Seeing them, you might be taken aback to hear that they have a disabling illness, and see no harm in expressing your surprise.
When you remark to a person with ME/CFS that they “don’t look sick”, or tell them that there’s no way to tell that they have a chronic medical condition, or ask them why they have that cane/wheelchair/mobility device/disability pension if they can WALK or SIT UP or THINK, you may be reminding them that:
- a quarter of us are housebound and for majority of the rest, it takes a huge amount of preparation and planning to venture outside safely. Yet most people we encounter will take being outside for granted and minimise our treasured accomplishment.
- despite ME and CFS debilitating up to 242,000 Australians, around half of our GPs do not believe we have a ‘real’ illness and think that we possibly are faking symptoms for attention.
- although we live with a poorer quality of life than patients with cancer, diabetes, and heart disease, most people will rather judge our condition on our looks.
- there is no cure for ME/CFS, yet the Australian Department of Health has only directly funded three studies into the condition in the past 17 years, and that funding ended in 2005. Most of it went to hepatitis C research, and studies by psychologists (ME/CFS is not a psychological or psychiatric condition).
- the burden is on us to constantly prove that we are ill and to ‘perform’ disability. This saps energy we don’t have.
- it often feels like our lives have been stolen from us, permanently, and yet disclosure of our condition is often met with disbelief or suspicion instead of sympathy.
- the majority of people still believe that disability always ‘looks’ a certain way and may shame or punish us publicly if we do not conform to their preconceived ideas.
- exertion (such as walking, reading or having a conversation) worsens our symptoms. So, while we may be able to be active in this moment, we may face days, weeks (even months) in severe pain and fatigue to pay for it.
- we may know the cost of exerting ourselves with this outing and be trying not to think about the physical payback that will come later. We want to enjoy this moment.
If you’re surprised to see a young person with no ‘visible’ disability walking with a cane or standing up from their wheelchair (aren’t mobility aids visible?) – or to hear that a person with no mobility aids is severely ill – ask yourself if it’s more important for you to satiate your momentary curiosity, or for someone with a serious illness to have a nice day.
Curious about ME/CFS? For last year’s ME/CFS Awareness Day, I recorded a short audio documentary giving a run-down of the illness for my podcast Just A Spoonful. You can listen here.
For more you can listen to my interview with 3CR’s Women On The Line about living with ME/CFS, or this conversation I recorded with fellow writer and ME patient Lefa Singleton Norton. Or read these pieces I have written for Seizure Journal: the satirical ‘How to talk to sick people’, or memoir piece ‘An inconvenience’.