This blog post is a response to Meredith Gould's post earlier today.
Stanford Medicine X (Part Deux): Pondering Illness and Self-Disclosure in the Digital Age
In her blog she asks the following questions:
How has self-disclosure changed for you in the past five years?
What factors have led to those changes?
Are you more or less likely to engage with someone who openly discloses personal health information? If you're likely to engage, is it in public or via the back channel?
Self-disclosure has changed for me in the last five years. I have felt more supported because of online communities and my ability to talk to healthcare professionals and other chronically ill people. In some ways blogging and being an "expert" in my own right has helped me kick in some invisible closet doors that were my secret shameful closet for many many years. More than being queer, more than being in an abusive relationship, more than any other thing - chronic health problems drove me to hide for a long time.
On the other hand- there are still areas of my life I chose to keep private from all but very close friends. There are still areas I have difficulties with and areas that trip me up. I'm more able to acknowledge they are sticky wickets - but it doesn't CHANGE their presence in my life. If I am applying for a job for example, because I think I am able to work but only want a part time position, I still need to decide if and how to explain a four year gap on my resume from when I was at my sickest. Yes, I may have been producing some work or getting paid in small areas, but I wasn't holding a full time position with a company that can vouch for my work. Do I say, "I have lupus and it's under control and I'm able to work part time and would love a position with your company." Do I say: "I had some health complications that are sorted and I'm looking forward to working for you now." How exactly does one dust away a four year absence from the work force without saying, "I took time out to have kids etc?"
And here's the kicker -- I KNOW for a fact that admitting to health issues DOES change how people treat me. IT DOES. Some of my friends treat me much better. And some of them dropped out of my life. Some of them handle my ups and downs and some of them ONLY want to handle me when I'm having "good days."
Factors that led to my changes:
1) I couldn't hide it anymore. My invisible health issues became visible. Glaring. And I got tired of my own shame. But coming back from it -- I don't know how. People have encouraged me to start my own business (again). They have "given me permission" - but have forgotten the ENORMOUS internal energy that it takes to have self-combustion and do a paying self-start up.
2) I wanted a companion and wanted to date without self-loathing. In order to do that being real and transparent was the only way I knew how to do it.
3) Sometimes I forget I'm sick. The only time it seems to make a difference are when I NEED people to know. (Like jobs or a lover or very good friendships). Navigating my life with health chronic health that sometimes knocks me on my ass and I sometimes forget about - is a strange and wiley beast.
4) I got tired of people & institutions TALKING about being pro-disabled but not really having any clue how much energy it takes to attend and contribute. Or in some instances - being actively discouraging to disabled people. I've been to too many professional conferences where dealing with being sick took ALL my time and energy and the ablism was so extreme it was laughable. Watching healthy people shout out, "If you need to read my speech because you are impaired step forward and get one." Watching how difficult it was to earn a PhD and seeing my colleagues publish -- knowing I was doing my utter best to get my IV's and teach, and knowing that paltry research and publishing I was doing wasn't going to cut it for a tenure track job. But also knowing that I worked in an industry that pretends that "equality" matters. I knew I wasn't on equal footing. Yes - my colleagues were busting their asses too. But being sick (like being a mother) is often a full time job in itself. Just admitting it instead of hiding it made me feel like I came out of the shame closet. My chest can finally breathe.
Occasionally- I get blown side-ways and when I do, I pull in and try to straighten my boat. I know from long experience that if I do NOTHING for a few days - life often sorts itself out to a calmness again. And the prospect of dealing with intense care giving situations while being chronically ill are sometimes daunting.
The most recent example are when my long-distance lover visited. I wasn't sure how she would take it when my mother got sick and I had to do some shopping and food prep. I was nervous answering some questions about my health and insurance. And I had two doctor appointments when she came. One was a simple check-up but one was for a steroid injection because I was feeling sick. Self-disclosure on a more personal level and letting a lover in more deeply was FAR more daunting and vulnerable to me than any online interaction. It was harder to do than any interview. I felt in those moments a sense that I could be rejected as being too difficult or having a family situation that was too complicated. Even now my eyes are tearing up because of how vulnerable I felt.
Am I more or less likely to engage with someone who openly discloses personal health information? Do I do it in public or privately? Both. I get emails and messages from many people who ask me about dealing with chronic health issues. I feel like an expert on it because I have been a patient for a VERY long time. I know how to do it and very little about being a patient or a caregiver throws me for a loop anymore.
I often engage with people who have chronic health issues. But I admit that I am more likely to make closer bonds with people who have more in their identity. I need more than a health issue to really connect or know someone. We are all more than our problems just as we are more than our accomplishments. I have rarely (if ever) met someone who doesn't have some complication - depression, health, sexual assault, or financial distress etc. What makes people light up for me are their spirits and the connection we make - online and off. I've kicked in the closet and invited others into my life. But that doesn't mean that celebrities going public are going to make it any easier for the rest of us. People are often afraid of illness or the complexities of chronic health. Some people are compassionate and nurturing and some people are not.