Greetings all!
If you’ve read Grace is a Pre-Existing Condition, you may have noticed me thanking my research assistant, Hailey Joy Scandrette, for her crucial contributions to the book.
Hailey is an author, advocate, and independent researcher, and I thought you might like to know more about her! She kindly agreed to answer a few interview questions to share with my readers, which I’ll share in a couple of posts.
You can also read more of Hailey’s writing at haileyjs.wordpress.com, and/or join me in supporting her work at patreon.com/haileyjoy
Here’s Part I of my interview with Hailey, in which she shares a bit about herself, her journey with chronic illness, what things are like in San Francisco right now, and what’s life-giving during this season:
What are a few things you'd like viewers of my website/readers of Grace is a Pre-Existing Condition to know about you?
Hi! My name is Hailey Joy Scandrette, I’m a 26-year-old writer and independent researcher from San Francisco, CA. I have a degree in US History and a minor in Counseling, and am fascinated by how humans work on both macro and micro scales. I am passionate about the power of storytelling as a connective force between people, which may or may not just be a fancy way of saying that I like talking to people, writing, reading novels, and watching Netflix. I am chronically ill and learning to dream up a small, slow, meaningful life that honors my body's limits while also honoring my heart’s needs and desires.
You've written about your own experiences with chronic illness, and I quoted some of your writing in my book. Can you share a bit about that -- what's something you wish more people understood about chronic pain and/or fatigue?
I’ve written quite a bit about how often the hardest parts of dealing with chronic illness and chronic pain aren’t the actual symptoms, but are the ways other people respond when they don’t understand and the isolation that many people with chronic illnesses and disabilities often face because of the narratives in our culture around sickness and disability. Being in pain is really awful, don’t get me wrong. But being in pain all of the time and not feeling seen or validated in that experience by people in your life is heartbreaking. Having to defend my experience, my treatment choices, and even my acceptance process makes me feel incredibly lonely, vulnerable, and misunderstood. I understand that it is confusing to people that I look healthy and can often participate in normal activities for a set period of time, but also openly tell people that I am disabled and unable to work a traditional job. Most people do not see me at my worst, especially now that I have learned to manage a lot of my pain by staying within my energy limits. I understand their confusion, but I am still hurt by it, especially when it comes out in suspicion about my own or other disabled people’s truthfulness.
Sometimes I feel pressure to prove that I am really ill by displaying my most miserable moments for other people even when that doesn’t feel safe or helpful to me. I long for a shift in our societal narratives that encourages people to trust chronically ill and disabled people as the authorities of our own experiences. On a personal level, I especially long for other people to accept and support my acceptance of my illness. It took me years and years to accept that I may never work a conventional full-time job, it was a long, painful process, but on the other side of it I have found a sense of peace in not spending my life trying to have a different one.
“I long for a shift in our societal narratives that encourages people to trust chronically ill and disabled people as the authorities of our own experiences. It’s been so powerful to begin to believe that I can have a good, meaningful life even if I’m not financially independent, even if my productivity doesn’t look like abled people’s, even if I have to be different.”
It feels so freeing to decide that my purpose in life isn’t to be able-bodied or to do everything that healthy people can do. It’s been so powerful to begin to believe that I can have a good, meaningful life even if I’m not financially independent, even if my productivity doesn’t look like abled people’s, even if I have to be different. However, I still meet with people (friends, family members, even some medical professionals) who aren’t comfortable with my acceptance. It can be very isolating to not be believed or trusted to know my own body, experiences, and needs. So, if I can give any advice to people seeking to love their disabled and chronically ill neighbors better it is, start with the assumption that we know our needs best and trust that we are being truthful about our experiences.
What has the experience of isolation because of the coronavirus been like for you? What are things like in San Francisco right now?
San Francisco was one of the first cities in the country to issue a Shelter in Place order, so we’ve been self-isolating at home since March 17th. We are successfully flattening the curve, so that feels hopeful, but it’s been a surreal experience. The city is slower and quieter than usual, although as isolation has begun to wear on people we’ve seen more people going on walks and bike rides than we did the first couple of weeks. My brothers are both essential workers at a small local grocery store and they are busier than ever, even now that most people have stopped stock-piling toilet paper and food staples.
For the first couple of weeks I actually felt particularly qualified to cope with self-isolation. Since becoming chronically ill I’ve become used to managing without seeing people outside of my household for a couple weeks at a time either due to exhaustion, symptom flares, or self protection during cold and flu season. Of course this isolation came with a bit more anxiety than other instances. I am not immunosuppressed, so not at high risk for fatality, however, I actually have an overactive immune response which means than when I contract a virus (even a normal cold or flu) it triggers a flare-up of my chronic illness symptoms that can last much longer than the virus itself because my body will basically become hypervigilant and wear itself out fighting the virus harder than it has to. Because of this there are concerns that for someone with my condition getting coronavirus could trigger a flare-up that lasts for months or years. So I’ve definitely experienced some extra anxiety about my health throughout this. It’s also been an interesting experience to see most of the world learning to cope with isolation and kind of having some solidarity in that, when for me learning to cope with isolation when I first became sick was a very lonely process. I hope that maybe this experience will help more people to have compassion and empathy for people with illnesses who deal with isolation even when there’s not a global crisis.
“For the first couple of weeks I actually felt particularly qualified to cope with self-isolation. It’s been an interesting experience to see most of the world learning to cope with isolation and kind of having some solidarity in that, when for me learning to cope with isolation when I first became sick was a very lonely process.”