(Explicitly Sick) ME, POTS, Mayo Clinic, and What Persephone Has To Do With It: Sarah Ramey - Part 2

SARAH MARIE RAMEY

Email address *

[email protected]

Website/Blog, Twitter, & Instagram Handle

www.sarahmarieramey.com @sarahmarieramey and @wolflarsenmusic for both

Name *

Sarah Ramey

What is your disorder? *

Hoo boy. What isn't my disorder? We can limit it to ME/CFS, complex regional pain syndrome (CRPS), and postural orthostatic tachycardia syndrome (POTS). Vulvodynia, a neurogenic bowel, mast cell activation syndrome (MCAS) too. You can just say the first three if you prefer - it starts to sound like reading the alphabet.

At what age did your disorder become a daily issue? *

22

Who were you before your illness became debilitating? *

I was incredibly active. At the time I got sick I was directing the college musical, the head of the women's a cappella group, the singer in a loud rock band, and a senior in college.

What would you do if you were not dealing with your disorder and/or disability? *

You know, I recently read through a journal from my senior year of college - and all I wanted to become was a musician and a writer. So despite it all, I somehow managed to stay on track there. I actually think it's quite likely I would have been pulled *off* track if I had not become sick, just because making money as an artist is such a challenge - and in my case, since I was stuck at home all the time, writing and music were some of the only options. However, as so many have suggested, this is not some sort of cosmic gift or rebalancing. I would give up being a writer and a musician in the blink of an eye if I could just have my health back. And indeed, sick people shouldn't have to choose. Being sick is not like wishing on a monkey's paw and getting what you always wanted, but at terrible a cost. I reject this, and think we should be working to understand these disease so that we can return health to the these patients, *so that* they can pursue their dreams fully. That's a long-winded way of saying: I would be doing music and writing, but in a much more active, and outward way. I would tour, I would play live, I would do book fairs and publicity events, and teach, and lecture - all things that are 90% not available to me in my current state (though I can do a little, and a little is much more than nothing).

What would you like people to know about your daily life? *

My daily life is what a normal person would consider a hellscape - filled with extreme pain, both abdominal, spinal, and vagina, and long periods of extreme exhaustion, heart problems, and brain fog. I have an ileostomy, which means I have an external bag for my own poop, and have to empty that 6-10 times a day. The pelvic pain is constant and excruciating. But, and this is the point, this is a *major improvement*. I used to be nearly comatose all day long with severe ME/CFS, with my mother propping me up to feed me soup. The pain used to be even worse than it is now. And before we diverted my colon, I was spending about 8 hours stuck in the bathroom every single morning and early afternoon, and couldn't leave the house - ever - until about 2 or 3 pm, like a vampire. So compared to that, I feel like I am actually doing quite well! I can leave the house in the mornings, I'm not stuck on a toilet all day, and the fatigue - while very bad for a normal person - is nowhere near as bad as it gets that the severe end of the spectrum. Hellish for a Normal, Not Half Bad for me.

What would make living and moving in the world easier for you? *

Never having to explain that I am actually sick just because I look fine. All kinds of people with very serious illnesses look fine, and they have but to say, "I have stage 4 cancer," and the entire world knows to respond seriously. I have never, not once in my life, told anyone I have ME/CFS and had the response be "Oh no, I am so sorry to hear that." Never! That is extraordinary and devastating.

Do you have any life hacks? *

I batch everything - I batch meals and make 4x as much as I need so that I have food for a while. I batch work, and have chunks of time set aside for email, for most important task of the day, for social media, and for reaching out to my friends and family. When I get away from batching, especially with work, I just feel constantly overwhelmed.

What kind of support do you get from family or friends? *

At this point, I have a lot of friends who check in on me, and my parents are extremely supportive. It's important to note: this was not always the case. This took a lot of asking for support, explaining my condition, explaining how isolated I was, explaining how painful it was to be the one always reaching out for help. But all those painful conversations paid off, and I feel pretty well supported these days. Indeed, especially since COVID19 - I've heard from every person I've ever met in my life.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Lol. Yes. As you know, the whole book is about this. There are many examples - from the innocuous but still amazing (Sarah, diet has nothing to do with irritable bowel syndrome), to the catastrophic (the surgeon who cut out a piece of my labia and then accused me of orchestrating the whole thing so I could get him to give me one Percocet).

How has your chronic illness affected your relationships? *

I have a few friends who are and have been extraordinary throughout all of this, but for most of my relationships the illness put an enormous strain on. Because there is no infrastructure around these illnesses, no one knows how to help, how to respond, if it's really happening at all - and so you just end up incredibly alienated from the very people you need the most, your close friends and family. It's quite different from having a problem where there are haters Out There, on the internet, or in society - but you and your family and your tribe are in solidarity. There is often no support for these illnesses, even from close friends and family - which is heartbreaking.

Is there anything you are afraid to tell people in your life? *

Haha - not anymore! This book is pretty...comprehensive.

What is your best coping mechanism? *

Gardening. This is new to me, and one of the most effective things I have found that genuinely resets the stress and/or sadness cascade. I have a container garden on our roof here, and I tend to it every day, and it is quite literally the best part of every day.

What are you the most concerned about and the most hopeful for in the future? *

Most concerned: that there will be a wave of ME/CFS post-COVID19, since all viruses have been linked to triggering this disease, it would be surprising if COVID19 is exempt. I am very worried that these people will be treated just as atrociously as the rest of us. On the flip side, this is actually where I feel some real hope. I think that because the cases will be highly visible, and because I think the ME/CFS community will be vocal about speaking up for this patient population, we may actually see at change at the CDC and the NIH where they change their mind about the nature of ME/CFS (which they still believe is essentially psychological). Unless they are prepared to make the case that these tens of thousands of patients - who were completely healthy and normal beforehand and are now glued permanently to their beds - are simply malingerers and hypochondriacs, a very bad look for the NIH and CDC with the world watching, I think this may finally open the door for taking this phenomenon seriously, with real funding and real research. This doesn't help the larger WOMI population, which is not just limited to ME/CFS, but I think if just one major group is taken seriously, then all the related problems will necessarily have to be taken more seriously as well. Or, should be.

What makes you energized or enthusiastic? What drains you?

The answer to both questions is: conversation! I am pretty isolated, and so conversation is hugely important to me - but it's also very draining. This is one thing that I just accept, and the pros outweigh the cons.

Any favorite books or shows?

Outlander! :)

What is the hardest and/or best lesson your condition has taught you?

I can survive anything.

What is the best purchase under $100 that helped your life

My Slate Plus membership - I am an avid podcast listener, and Slate Plus is a yearly membership of $50 that gives you access to more of their podcasts, bonus sections of each podcast, etc. I genuinely feel that this family of podcasts has improved my quality of life.

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