I’ve been thinking lately about the concept of awareness. This is a word that anyone with a chronic or serious illness ends up hearing or using a lot. There are days or weeks, charity events, websites, blogs, and forums dedicated to raising awareness of this illness or that. Often in these cases “awareness” includes money to be spent on research or treatment, but my thoughts about this term go beyond the financial. Three particular instances have given me a lot to mull over.
September 14-20 was “National Invisible Chronic Illness Awareness Week.” (How are people with chronic fatigue meant to read to the end of that title without falling asleep?) When I first heard of this, I thought how wonderful, a week dedicated to the problems faced by people with invisible illnesses, something one of my favorite forums, But You Don’t Look Sick, is also all about. I read some excellent — and secular — articles on the site pertaining exactly to my experiences, such as this one about parking in disabled spots when you’re not obviously a gimp. (I use a cane now, but I still find myself affecting a limp I don’t have when I leave or approach my space.)
But look more closely at the site and you will see a few mentions of Christian resources. It turns out the week was created by the founder of Rest Ministries, which identifies itself as “a Christian organization that serves the chronically ill through a variety of programs and resources.” Now don’t misunderstand: I have no problem with the existence or mission of Rest Ministries. I appreciate anyone, religious or otherwise, who feels moved to help those who need it. But being both Jewish and atheist, I feel doubly disenfranchised by this site. I couldn’t bring myself to participate in Invisible Illness Week, and possibly they lost other non-Christian or non-theist people who were similarly turned off. I don’t like that the Christian connection is not made clear, but rather insinuated in various points on the site, nor is there any balancing message of inclusion towards non-Christians. My several inquiries as to this situation received no response.
“It doesn’t really matter because they’re spreading good information,” I’ve been told. It’s true that they are, and to some extent I agree that it doesn’t matter. But awareness campaigns that do not explicitly include the wide range of people whose lives are touched by illness do a disservice to those they could be helping, including shooing away people like me who would otherwise be moved to help with the campaign.
The Deal With Disability is a blog run by Eva. She is severely physically disabled by cerebral palsy, and in her sharp and often funny blog, she recounts stories or even posts clandestine video, taken by a camera attached to her wheelchair, of the variously strange and ignorant ways people treat her due to her appearance.
There’s nothing wrong with sharing a laugh. As both a sign language interpreter and as a nerfed person, I know the startling and often hilarious range of idiotic comments and actions from “normal” people (yes, it’s a terrible term, so please forgive the shorthand), as well as the pleasure and relief that comes from sharing stories with other people who have been through the same thing. Additionally, I can see a great benefit in showing those who haven’t what it’s like from the other side.
Then I saw this post. And I found that I was no longer on Eva’s side here. I don’t know about the legality of these videos, so I’m not touching that aspect. But I started wondering, what kind of “awareness” is this effort encouraging? This is what Eva says:
As for my aide’s somewhat timid responses, I generally prefer them not to cause a scene. And from their point of view, it’s really awkward to try and correct people, particularly when it totally comes from left field. Not to mention the woman was really sweet, and no one wants to make her feel bad. The best thing we can do is get amusement out of it.
This is certainly not the best thing we can do. What do you suppose is going to happen the next time that waitress encounters a similarly disabled person? Will she have learned from this encounter? Will that person have a better experience because of Eva’s? No, he will not. I understand not wanting to make a scene, but there is no reason the aide could not politely take the waitress aside, and explain the situation privately, while expressing appreciation for her attempts to help. Instead she skirts the issue and shares the giggle. I’ve navigated these waters many times, usually following a deaf client’s lead and sometimes having to instigate a conversation with a hearing person myself, and I don’t see anything that funny in this missed opportunity. We get to be more aware that “normal” people can be ignorant when it comes to disability. Fine. But meanwhile, there is no increased awareness on the part of the person who really needed it. Stubborn, intentional ignorance should always be mocked, but those who simply don’t know do not deserve that treatment if you’re not also going to give them the chance and the credit to learn, and improve. This is the antithesis of spreading awareness.
On September 9, renowned 87-year-old musician and writer Pamela Weston ended her life at Dignitas, a controversial assisted-suicide clinic in Switzerland. She had been suffering from M.E. (myalgic encephalomyelitis, either another term for or the same illness as chronic fatigue syndrome) for 17 years. Before she died, she wrote this article for the London Times explaining her decision. Based on reactions to this letter, both what I’ve read online and received from friends, her decision and her writing together brought the reality of this illness home to people who didn’t fully understand its potential severity. That seems like the very definition of a positive kind of awareness – not positive as in “happy” but rather constructive, and beneficial to both patients and nonpatients.
And most efforts towards awareness do seem to focus on bringing this message home, especially since illnesses like ME/CFS have been stigmatized for years in all kinds of annoying ways. (We’re not sick; we’re just depressed, lazy, or suffering from “yuppie flu.”) I absolutely agree this is a necessary part of organizations like the CFIDS Association of America or grassroots movements like the Blue Ribbon Campaign and WAMCARE. We need to get the word out about the negative shit, because as patients we need to be taken seriously.
However, I wonder if we aren’t neglecting other aspects of ME/CFS that would also help in validating us. By this I don’t mean recovery stories. While they can be hopeful and inspiring, right now our community needs to continue focusing on the message that most of us will not recover fully, if at all. What I’m talking about is our stories of coping, and survival, and hope for the future that doesn’t have to include “getting better.” I see many of those stories on our own forums and support groups, and I wish I saw more of them in both mainstream and grassroots publications. It helps complete our portrait as sick people to include those stories – especially given the outdated but persistent view of ME/CFS as a mental illness. It’s been said that if you ask a clinically depressed person what they would do if they were suddenly healed, the answer would be “I don’t know”; but ask a person with ME/CFS and they’ll have a list a mile long. (I wish I knew who to credit for that excellent observation.) The story of our illness needs to include “I am,” “I can,” and “I wish” alongside “I can’t.”
So when we set out to spread awareness, what do we really mean by that? What do we hope to accomplish both for ourselves, and for those who are not in our shoes? I hope to hear your opinions on this.
Joey thanks for bringing my attention to your post here. I try to read all your blogging but sometimes I miss some and this one is definitely important! I know you are looking for an opinion about this from us at WAMCARE, and I’ll make sure our other members read it. As for me, I have to agree with everything you said. I am also ‘turned off’ by the Christian context of many sites, but if it’s not overt and trying to ‘convert’, my approach is to suck it up and use what I can from it. Other people may find the Christianity in there to be very helpful and I don’t want to take that away from them. I was drawn to Buddhism myself because of the way it deals with suffering, and I know a lot of others feel the same way. So I agree that its a shame other faiths aren’t represented in such places.
I also agree that more attention needs to be placed on coping stories, and I think we at WAMCARE have done a good job trying to tell those stories. I don’t recall that we’ve published any about recovery. In fact when I read recovery stories I am always skeptical since they usually come with an endorsement of some miracle cure. We do our best to find and “tweet” stories from people with every level of ME/CFS illness, and I find most moving the stories from people who are severely effected, in part because they make me grateful I am able to get out of bed and do things like create awareness. We who are able have to be their voices, get their stories told. We work for them and ourselves so that one day they will be able to throw off the bedsheets, remove the IV’s and get up to live again.
Raising awareness means getting the truth out there into the minds of every person in the world, so that they know what ME/CFS (and other illnesses) are, how they effect the lives of people who have it (often stealing their lives), and how they have been stigmatized and made worse by ignorance. It means answering questions plainly, not sugar-coating it. It means correcting people’s ignorance, like the waitress you mentioned. Change occurs one person, one opportunity at a time. This is how grassroots movements work, and it is painstaking but nevertheless worthwhile.
Keep up the good work on your blog, thank you for this post and the time and thought you put into it. You are doing your part!
Hugs,
Michelle (@perpetualspiral)
Fantastic comments, Michelle, thank you for your thoughts on this!
I should have noted that the stories of against-all-odds recovery that I read are never, at least in my (notably spotty) memory, from the organizations I mentioned, but rather in the mainstream press. It seems that for the story of “illness” to be palatable, there has to be a focus on the possibility of getting better. Given a choice I prefer to see more mainstream coverage of the most severe cases, which gets the point across better than focusing on the possibility of recovery.
I do think WAMCARE, the CFIDS Association, the Blue Ribbon Campaign, and so many blogs and other patient-run publications out there do the more necessary work of reinforcing how ME/CFS steals lives. Now if we can just get people outside our community to spread the word a little better!
Joey, I too am from Wamcare and agree totally with your statements. Although I personally do not suffer from ME/CFS I lost a dear friend from the disease. Awareness to me is not repeating the same old retoric on what the medical community is doing or not doing but letting people know how if feels to have a chronic illness and how it can affect them also even if they may be healthy. Thank you for your spirit and fight and if you feel you would like to contribute to our group in any way I would like to say you are welcome to join us. Thank you again and take care and be safe.
Darlene
Darlene, thank you for that comment. I’m so sorry to hear about your friend.
That is a really good point you make about awareness as it pertains to healthy people. I know over the years my husband has found information for carers to be very helpful and way to validate his own experiences. Certainly he is almost as much affected by my illness as I am. I completely agree that is another important component of awareness.
Hi Joey.
Your blog makes for some very interesting and informative reading. I to struggle sometimes with the whole ‘Raising Awareness’ thing. Personally speaking, for me its about making people aware of the diversity of the causes and symptoms of ME and how it impacts on the lives of different people and their families.
I’m not so interested in reading about people who have miraculously recovered, because for me there seems to be no cure. Although I am currently trialling a new drug to help relieve the symptoms, I don’t think a cure will ever be found. This is because everyones ME seems to be different. There isn’t any one cause, nor are all the symptoms ever quite the same.
My fianceé struggles to get to grips with my health issues, not just the ME, but also all the other things that I have. ME was the first disease I was diagnosed with, but over the past 20 years, so many others have also been diagnosed that are far more serious.
For me, raising awareness is about collecting and dissemininating information and support for All affected, not just the sufferer, but their carers too. Sometimes people get things wrong or have a different opinion, but we shouldn’t and mustn’t castigate them. What works for one, won’t work for another. Thats because ME doesn’t have a common cause or path of effect.
However, it is most definitely a neurological illness, not a neurosis. It needs all round treatment and that can include medicinal, therapeutic and psychological treatments. ME has an effect on the whole person both physically and mentally.
Keep up the blog, it is great! I wish you all the very best.
Steve X
Hi Steve — great points you make. I agree that awareness of how differently the disease affects us all is important. There are people out there with ME/CFS who I really can’t believe are able to do as much as they can, and then there are others who feel the same way about me. I think the full picture includes comprehending the myriad ways and the range of severity associates with ME/CFS. Thanks for your kind words and excellent comment.
I’d like to object, in a friendly sort of way, to the characterization of me/cfs as a less severe illness. I know Steve, you have several very serious illnesses, and it’s likely those other illnesses have more acute symptoms than those you have from your ME. However for some people ME sptoms can be just as acute and life-threatening. The seizures our mutual colleague has, for example, or the ME that killed Sophia Mirza. I am not fond of the “one disease is more serious than another” comparison game – in the case of ME/CFS, it just reinforces the prevailing idea that it’s “just fatigue”. It is certainly beyond unfair that you should have to suffer from multiple devastating illnesses, and for so long.
Hey Laura from WAMCARE here. What na amazing blog post. I agree that we do need to speak up for ourselves when we are mistreated and for others who cant speak for themselves.
I do believe it is important to share stories of coping at all ends of the ME/CFS scale. I also think it is important to share stories of improvement and relevant science and things which have helped people. Not cons obviously. But as ME/CFS is so different and unique to that person if we pass on something beneficial to one person then it may help others too. Even if an improvement is small it is at least something.
Thank you for your lovely blog entry.
Laura
~X~
Hi Laura — I completely agree that news of successful treatments is an important part of raising awareness. Unlike other illnesses, the mainstream media rarely if ever reports on ME/CFS research, and I personally have found patient networks to be much more helpful for that. This also works in the other direction. For example, I learned about graded exercise therapy (GET) from “official” sources; the NHS, for one, still supports this treatment for people with ME. It wasn’t until I got connected to online ME/CFS networks that I learned about how much research there has been demonstrating the adverse effects of GET.
Thanks so much for visiting and for your comment!