Invisible Not Broken - Chronic Illness Podcast Network

www.stasiablack.com @stasiawritesmut @stasiablack

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Pat Ruthfuss Whil Wheaton Mental Health Talk

How to let people down

Writing advice

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Name *

let's go with my pen name, Stasia Black

What is your disorder? *

CFS (Chronic Fatigue Syndrome)

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

19

Who were you before your illness became debilitating? *

Well, I feel like there are two answers to that, the me before I got sick the first time and the me before this most recent relapse six weeks ago. The first time I was a college student, I’d just fallen in love and was having the time of my life that came with city life after moving from a small Texas town to Chicago. My fiancé and my’s courtship played out in long walks every day after class all over the city as we got to know each other. Then, the summer after that first year, I got sick with what I thought was the flu, except that it never went away. It was literally night and day, one day I just was exhausted and couldn’t… I just couldn’t. Walk, exercise, attend classes, my body just shut down. Fast-forward eighteen years. The first fifteen were much the same, small ups and downs, but with me very debilitated. Until we moved to Northern California three years ago and my health suddenly improved dramatically. I slowly built up to being able to exercise for an hour, being able to swim, take long walks. I’d been writing for years but I finally went pedal to the metal and pushed my publishing career into the next gear, learned the marketing game and had multiple bestsellers. I published six successful books last year and started my own publishing company. I intended to publish eight books this year in addition to the publishing house beginning to publish several authors as well, with me as the sole content editor. Until BAM, like terrible déjà vu, six weeks ago. One day I was okay, well, I’d been feeling more rundown than usual for a few months but I could still spend all day outside the house, and then the next day I was flat on my back and couldn’t move. It’s been like that for six weeks with absolutely no change.

What would you do if you were not dealing with your invisible illness? *

I would be kicking so much ass with my publishing empire. I would be acquiring more authors and working ten hours a day because I love it and attending every author conference I could, networking with the biggest and best authors, and exercising like a beast and living the fuck out of my life.

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

God, CFS is such a bitch. At the moment, I spend all day in bed or on the couch, with only enough energy to drag myself to the bathroom when I have to pee, and that’s it. Some days are 6 spoon days, some days are 2 and I burn through them in a few hours, then the rest of the day I’m in bed. Some days I wake up and there are just no spoons at all and I know I won’t even make it to the couch. On the 6 spoon days, I can manage maybe 1 to 4 hours on the computer a day, but I think that’s pushing it and maybe why I haven’t gotten any better in the last six weeks. Moving the mouse exhausts me, even when I try to keep it to the tiniest little movements possible. Typing is impossible. I bought Dragon software so I can dictate, hoping that I could continue to keep writing in an attempt to hold onto some part of my old life. I’m too exhausted to read so for the majority of my waking hours all I can do is lay in bed and listen to audiobooks and podcasts. And think. And stew. And feel way too raw to deal with any of this.

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

We just bought me a new wheelchair (we sold my old one in a fit of optimism a year ago) and also got a headrest attachment which is really important because holding my head up is impossible right now. We’re going to try to go to the movies this weekend and see how it does. Also we got a shower chair which is amazing and just such a necessity, I want to marry it.

Do you have any life hacks? *

I’m still trying to figure these out. I’m seriously on the lookout for coping mechanisms at the moment. I thought I had… I just don’t even know. I guess I do have several things now that I’m thinking about it. Meditation, like, out of desperation, a cobbled together version from a bunch of different places. I keep feeling like I should delve into this in a more practiced way, but again, I think I’m just too raw. Like, I’m cycling so wildly through the grief cycles day to day and hour by hour I can’t manage anything as grown-up as that. Good books and podcasts. My husband spending time with me every night so I know I have that to look forward to every day, if I can just make it to 6:30. When all else fails, thank God I’m in California, because edibles. There’s nothing like some cannabis to help me get the hell out of my own stupid head and get some perspective. These are all coping hacks I realize and maybe you meant something more concrete but this is all I’m focused on lately. All the other stuff I guess I’ve gotten so used to either doing without or having my husband do or being lucky enough to be able to pay somebody to do (we do have a woman who comes in and does laundry and to also cooks me huge batches of baked oatmeal that I can then freeze and eat for breakfast every day). I already mentioned dictation software, which is a lifesaver and the only thing enabling me to continue my work at all. Also, anti-depressants FTW!

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

My husband. I’ve heard you talk about yours as being a saint and yep, mine basically has a halo, too. He’s sweet and supportive and raised our son for years when I was flat on my back. I basically considered him a single father for as much as I was able to contribute. He did (and does) all the cooking and cleaning and then is an emotional support on top of it. My family lived far away and even when they were close, it was always very difficult for them to understand my illness. The same with friends. It’s a refrain I’m sure you’ve heard over and over. I looked the same on the outside, I looked fine. They couldn’t understand why I kept saying I was so tired. And LOL, now I’m looking at your next question and yeah, that was basically the first five years of me being sick. When we moved to California, I didn’t bother making friends because I wasn’t sure if my health would hold and I never know where to introduce in the friendship, so… I have this thing…

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

SO many. SO MANY. Doctors, friends, family members, more doctors, more friends. I was so bitter for years when I first got sick because I was just shocked that people didn’t believe me. I was a logical, intelligent person who was not into drama… But people thought I was lying or exaggerating or lazy… I just couldn’t fathom it. This very REAL thing was happening to me and no one except my husband really thought it was real. I was nineteen and I felt like my life was stolen from me and no one would believe me. One of the doctors I went to, after all the tests came back normal, kept trying and trying to tell me that I just needed to go see a psychiatrist because I was obviously depressed and that was what was causing my symptoms. No matter that I argued that I was the happiest I’d ever been because, you know, falling in love, and number two, if I was depressed, then exercising should make me feel better, not put me in bed for a week. Then there was the time early on when I was still dumb enough to tell people the name of what I had. Chronic fatigue syndrome, as anyone who has this will tell you, is the worst named illness for something that can ruin your life. I’d say I have Chronic Fatigue Syndrome. And this very well-intentioned mother of four laughed and patted me on the back and said, oh, I must have that too, with all these kids! I’m always trying to squeeze in an afternoon nap! I’ve gotten that reaction too many times to count, people saying that they must have it to because they get tired sometimes, and then I want to bash my fist through a wall. So now I just say that I have an illness where there’s a problem with my immune system, and when it gets bad I have to use a wheelchair. That goes over way better.

How has your invisible illness affected your relationships? *

I mean, like when we moved here, I was just very tentative about even trying to make friends. Because I’ve experienced so much hurt in the past over people not understanding about CFS, it’s almost not worth it. And of course, after three years, just when I thought it was safe and I started reaching out to make friends, literally just three months ago I started going to a local writing group and agreed to co-write a book with an online friend… Then I get debilitated again and disappear on everybody! And just thank God for my husband. We got engaged several months before I got sick and about a month before that, he sat me down and he was very serious and very nervous and almost afraid to talk to me. We’d talked about getting married but he said that before he could ask me that, he had something very serious to tell me. His father had Huntington’s Disease and there was a 50% chance that he’d inherited it, and he’d understand if I didn’t want to be with him because of it. I immediately responded, maybe naïvely, probably definitely naïvely—I was just nineteen—that it didn’t matter, that I loved him no matter what and I wanted to be with him for the long haul. We got engaged soon after and about a month after that got his test results that he did NOT in fact have the gene and could not pass it down to any children that we had. But my initial reaction meant so much to him, because he’d been prepared for me to leave him. Anyway, when it turned out to be ME with the debilitating illness, he was there every step of the way. And I know he’s genuinely never considered leaving me, not just because of how I reacted about the Huntington’s, but just because that’s the kind of man he is.

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

Because of all that my amazing husband has to carry, I try to keep the meltdowns in front of him to a minimum. But the sadness and the fear and the uncertainty and the not knowing how to cope with this… I try not to let it show except for maybe once or twice a week when really, it’s there all the time. Like, how much extra burden can I ask of him when I know he’s under so much stress at work and then when he’s at home I’m asking him to feed and take care of me and to literally bathe me? I feel like he should be getting something better out of the bargain, so at least I can stay positive or show him a more positive side. For him and my son, I definitely try to put on a positive face.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Oh yeah. I mentioned above, and just recently, I went to a new doctor because my insurance changed and I was trying to convince her to let me stay on this medication that is thought to help CFS because it can activate the immune system and there was just this look in her eye when I tried to explain… You know that look doctors get in their eye when they think you’re full of bullshit? And of course she wouldn’t continue to prescribe the medication and every time I tried to bring up the CFS the same look came back. And then when I tried to mention that I suspected I might have POTS, I babbled some more until I just stopped, the way she was looking at me, I could tell she thought I was a total kook who’d just looked stuff up online and ugh. Every time, with every new doctor, it’s the same thing. I’ve walked out of so many doctor’s offices bawling in frustration. I’m the healthiest extremely, extremely sick person you ever saw and it can be infuriating. Every test comes back just perfectly normal but I’ve barely been able to make it from the bed to the bathroom for six weeks straight. I want to go to the doctor, or rather I want my husband to drive me and then push me in the wheelchair into the doctor’s office, where I could then collapse on the table and just be like, I’m sick, can somebody just try to help me????

What is your best coping mechanism? *

Focusing on being present. It’s like AA. The only way to get thru this is one day at a time. If I think about the months or years ahead I’m overwhelmed, but today I can handle. And then I take it further because I’m pissed and I want to enjoy my life NOW. So I decided I WILL love my life now. This moment, I will find a way to love and live the fullest in and be fulfilled by, no matter if I’m forced to be in bed just listening to an audiobook or music or sometimes just my white noise app instead of all the other things I want to be doing. I don’t want to live today like I’m trying to escape it, to run down the hours and the weeks until I get somewhat better. I’ve done that before for long stretches of months and honestly for years, like a zombie just trying to make the days go away, mindlessly watching TV or whatever else I could to just escape my life. I did it for most of my 20’s. And obviously there are still days where that’s necessary, because sometimes it’s all too much. But I don’t want that to be the characteristic way I live my life. I don’t want to wait months and months until my life ‘starts again’. If this is my life now, if these narrow parameters are my reality, then I still want to live the fuck out of them. Which for me is an issue of mindfulness and choosing to fully engage with the present moment. This is me on my good coping days, anyway.

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

I worry about what it will be like to grow old with this. I’m thirty-seven and this sick. What happens when I’m sixty? Seventy? What if something happens to my husband? I mean, that thought paralyzes me. With grief at the thought of losing him of course, but also just practically. He’s my only support system. At the moment I’m able to make a separate income but I am in an extremely volatile business that requires a lot of output on my part and his support goes way beyond financial. I mean, feeding and bathing myself is difficult if not impossible without him at the moment. I’m hopeful to get some mobility back eventually. Because if there’s one thing having CFS for so many years has taught me is that yes there are lows and crashes but usually I come back out of them at least to some degree. I suspect it was the prolonged stress of last year (even though it was pretty awesome stress of accomplishing things I’d always dreamed of!) that brought about this crash (and who knows what other factors). There was another time I did feel a little better before we moved from Texas to Minnesota and then I crashed all the way this low. I assumed it was just the location change, but I’d been under a lot of stress then as well. So maybe there is a pattern…? The not knowing is scary and the idea of potentially identifying a pattern is immensely comforting, so we’ll go with that! So I’ll say that I can hope in a year or two from now I can hope to build back up some energy if I can finally learn to manage stress. But this is a pretty damn good incentive to never set myself up in such a position or ever think of myself as bulletproof or ‘cured’ like that ever again.

What is your favorite swear word?

Scheisse – able to be said with extreme feeling even with kiddo around :)

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I’d love to talk coping mechanisms because I feel like that’s the biggest struggle. And how to give up a big life and with people depending on me with the publishing house – I know you’ve had to close several businesses—how do you deal with this shit?! It’s the thing continuing to stress me out even when I know I can’t afford stress—I stupidly got myself into a position where people are relying on me and now I just…can’t…but I still have to!

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

Ugh, all I want to do is find a lesson in this, to create a story out of it. I’ve done it before, too. Created very pretty stories. I want to be like Oprah and say nothing happens by accident, that there is meaning in this, that it’s brought me closer to God or taught me how to find peace in the face of adversity—shit that has been true at points when I was at my absolutely sickest, when I never thought I’d get better. I used to meditate so good and found so much peace… now I’m just whiny as shit in my head, all like whyyyyyyyy? And doing stupid bargaining, literally the stupidest stage of the grief cycle, where I play dumb games in my head, which illness would I RATHER have than CFS if I could switch places? Which is stupid because hello, it’s not like that’s really an option! This is the only life and body I’m ever getting! Body and illness swapping is not a thing! So, the bargaining stage is dumb, that’s one lesson I’ve learned, but I still do it. And, stress is bad and it will fuck you up. I think I’ve definitely learned that lesson. Stress is not worth it. Wish I could go back in time and tell myself that, but again, time travel, not a thing.

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

Okay, so this is crazy and a little over $100 – but we got my wheelchair for $125 off Amazon! Like WTF?! And it doesn’t look or feel like a rickety piece of crap!