If we were to subtitle the theme of the two guests who joined us in August, it could well be: Left To Their Own Devices. Cass Rush lives Stateside under the costly US health care system; Jenny McGibbon joined us from Scotland, where care is provided free by the government’s National Health Service (NHS). Both received diagnoses fairly fast (for chronic illness patients), but from that point, for both, they were basically on their own. Strength came from adversity, however (we love that theme), and both women have great stories to share …
Cass Rush hit the quintuple jackpot. She is chronically ill, she’s female, she’s queer, she’s a woman of color, and she has been uninsured. Oh, and there is one more … she has faced mortality. We met Cass through her appearance in the excellent documentary series, Trust Me, I’m Sick (now streaming on SoulPancake).
After 18 months of failing health, the usual tons of tests (including a painful bone marrow biopsy), she recalls: “One of the doctors came in, and she was just like, ‘Look, you’re dying. And the only thing that I can tell you to do is to just keep trying. Because the number one way that this ends up getting the best of people is that they just give up.’”
Doctors finally diagnosed her with lupus SLE, and two years later, with lupus nephritis. “And then,” she recalls, “my care just dwindled down.”
For eight years, Cass has experienced first-hand the medical racism and systemic bias in our broken health care system. Despite her official diagnoses and the great pain she experiences, she is always reluctant to go to urgent care or the ER because she is looked at as a potential drug seeker. Yet without insurance, she is caught in the mire.
Her Top Three Tips? “Learn what your rights are as a patient. Always know that you can fire your doctor. And … Anything that your doctor declines to give you, tell them to put that in your chart that they declined it. Because in a lot of situations, they don’t want to have that in your chart that they said no.”
We then traveled across the pond to talk with graphic artist and chronic illness influencer Jenny McGibbon, whose health journey parallels that of Cass Rush in many ways. With some exceptions … Jenny was born with a birth defect known as gastroschisis, and has had the burden of chronic health issues her whole life. But she has been supported by the free nationalized health system, which led to a quick diagnosis of the condition that has disabled her as a young adult —ME/CFS, also known as Chronic Fatigue Syndrome.
However, Jenny’s diagnosis was hard-won. She absolutely believes that if she hadn’t keep pushing for answers, and hadn’t persevered with research on her own, she would still not have the ME/CFS diagnosis. Score one for the NHS when they finally referred her to an ME specialist (unheard of in the US), but she makes it clear … “Yes, I’ve seen an ME specialist, and he gave me my diagnosis. But after that, there is nothing here. There is no support system. You’re just left to figure it out by yourself. I was just so sure, for years … once I know what it is, I thought that was the difficult part. I thought that was going to be the problem. I’ve got a name for it, which I’m glad for because it’s helped me meet so many people in a similar circumstance. So it has brought me things. But it has a limit, and it’s not entirely helpful. And still there’s not anything anyone is particularly doing for me, other than what I’m doing for myself.”
But you owe it yourself to take a listen to the quiet, steady voice behind This Thing They Call Recovery as Jenny outlines a life of disability.
Here’s how Jenny describes the difference between acknowledgment (which she has) and acceptance (which she says she may not have) … “You get into a bit of a rhythm with chronic illness sometimes. And I think I’ve just gotten to a place now where I know what I need. And because of support systems I have in place, I feel able to say … these are my boundaries, and this is my limit. Obviously, there’s difficult periods, and sometimes it’s a lot harder mentally than others. Sometimes I feel like I’ve sort of accepted my chronic illness and that I will be living with illness to some degree forever. But it’s not like you get to that place, and that’s just it. I think I acknowledge rather than accept. I don’t feel fully accepting of what I have to deal with. I don’t like it, I’m not grateful for it. But it’s brought me things and it’s made me the person I am.”
Both Cass and Jenny are doin’ it … in their own unique ways. Treat yourself by tuning in to our August uploads!