There seems, in my perusal of social media lately, to be a feeling in some sectors of the chronic illness ‘community’ to be an expectation that those of us with a chronic illness are required to be advocates and to educate people about our diseases. The two activities are different, and separate from one another, but that also seems to be a blurry distinction in the perception of many people I see writing and commenting on the issue.
I read a blog post recently by Australian blogger, Carly Findlay, describing an encounter she’d had on a bus – a stranger approached her while she was checking her phone and offered assistance, which was not required. Given that her condition, ichthyosis, has an obvious physical aspect, she read this as curiosity on the stranger’s part, and was annoyed. The comments on both the blog post and the Facebook page where she shared it included many from people who clearly felt she should have used the incident as an opportunity to educate the person. That’s only one example of the many that I’ve seen lately.
There seems to be an increasing pressure that somehow, by being sick, we all have an inherent responsibility to educate people about our illnesses and raise awareness whenever and wherever possible. I‘ve been aware of it for some months, but recently, it seems to have resurfaced along with a great deal more discussion in various online groups to which I belong. While there may be many reasons for this, in Australia, a lot of the motivation for increased advocacy and education about illness and disability seems to be happening because, I think, there are far fewer institutionalized awareness programs. The national days/months for various illnesses come out of the U.S., and I’m seeing more people posting and using the colored ribbons that are part of those campaigns. Our own organizations exist as umbrellas for research and different resources pertaining to different diseases and conditions, but not so much for awareness campaigns.
Looking at my own Facebook wall, and thinking back over the years, I am realizing that I don’t talk much about my RA. There’s rarely anything specific to RA on my wall. I have two blogs (I write a book blog as well as the main Original Dragon Mother site) and neither of them was set up to write about my life with RA. I do touch on RA sometimes at The Original Dragon Mother, where it is relevant to the topic I’m exploring in a particular post, and I did participate in the #RABlog Week event using that blog as my platform. But it’s here on CreakyJoints where I’m writing specifically about it, because this is an appropriate platform for me to more fully explore issues around my experience with a chronic illness.
The thing is, my RA is not the sum total of who I am. It’s not the only thing in my life. It’s not even the main thing in my life. I don’t choose to be defined by my disease. Also, I’m not really the activist type. So, the idea of putting myself out there as a poster girl for RA feels really uncomfortable. I am many, many things, as my biography here indicates. I have a lot of interests that I continue to try and maintain, so that despite having severe RA, I still have a life that is mine that I enjoy.
I’m not willing to give that up. I also don’t think that being sick requires of me that I automatically become an advocate and RA educator. However, saying that also puts me in the firing line because there appears to be an attitude out there among some of the chronic illness ‘community’ that we should ALL be advocating and educating, ALL the time.
Frankly, I don’t feel that my illness is anyone else’s business except my own. To be honest, I find the grind of day to day living with RA quite tedious most of the time. It’s BORING being sick. REALLY boring. It interferes with my life in all sorts of ways, and makes keeping up with the things that really interest me (RA doesn’t – I’ve learned about that because I had no choice!) more challenging than I’d like a lot of the time. If it bores me, it stands to reason that me banging on about it at every opportunity that presents itself could well bore a whole lot of other people too. Why set out to do that?!
I don’t think, for a minute, that that advocacy and education shouldn’t be happening, and happening from a patient perspective. However, we are a diverse collection of illnesses, personalities and abilities. Not all of us are suited to be effective advocates. As far as the majority of chronic illnesses are concerned too, the different presentations that there can be from individual to individual with RA can be enormous – and that’s just one disease… We may have commonality in the diagnosis, but the severity may differ, our personalities aren’t the same and that can affect how we deal with our disease, our drug protocols and how we react to different drugs can be very different, and our personal circumstances can range from single people to those with families, and of a range of ages. As one individual, I can’t be representative of that many people and that much difference. I certainly can’t be an adequate advocate for someone with diseases other than RA – I just don’t know enough about other diseases.
I’m perfectly willing, on an informal, one on one basis, to answer questions about RA, and to explain my reality of living with it, when and IF it comes up in a conversation. That’s how I feel I am most effective. Despite many years as a professional performer, I loathe public speaking and don’t do it well. I’ve been writing professionally for many years now too, but the writing I do about RA is personal, it’s about my experience, and that is not the same as the next person with RA, let alone those with a host of other illnesses. So going there as a writer would be a whole other ball game that, again, I don’t want to do. Also, while a lot of people I know might laugh at this, I’m shy. I’m not good at putting myself into public situations and being the focus of attention. If that statement appears to be at odds with me being here writing this, remember, I’m using a pseudonym, and as a performer, I was hidden behind lots of stage makeup, wigs and costumes being a character. I wasn’t performing as myself.
I feel strongly that advocacy, like anything else in life, is a choice. For some of us it will be a choice that we DO become advocates for our illnesses. And that’s fine. There are many people out there doing just that and doing it brilliantly. For many, many more of us though, we won’t. There shouldn’t be an expectation or obligation there, and neither should there be any shaming for those of us who choose not to be active advocates.