Episode 03 — ME/CFS and an interview with filmmaker Jen Brea

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Hello and welcome to episode 3 of the podcast Tips and Tricks on How to Be Sick.

I’m Eirenne and I will be your host as we talk about navigating the world as people with chronic illnesses, both physical and mental, disabilities, and the ways in which the world isn’t necessarily designed for us.

In this episode, we have a special guest: we are going to be talking with filmmaker Jen Brea. Jen has ME/CFS, and while making a documentary about the progress of her condition from first symptoms through diagnosis and beyond, she did most of that work from her bed.

Without further ado, let’s go to the interview.

[Eirenne]
So today on the podcast, we are going to be talking with Jen Brea. Now Jen has ME/CFS, and Jen is a filmmaker. Jen made a documentary called Unrest, and if you haven’t seen it, you should definitely check it out. It’s available on Netflix and you can find the website for it at www.unrest.film Jen has more experience at talking about this, I think, than a lot of people, and she’s going to have some tips and tricks for people who have either just started developing their symptoms or who just gotten a diagnosis and aren’t really sure what to do or how to go forward.

Jen welcome to the podcast.

Can you tell us a little bit about yourself, about the documentary, and about why you decided to go forward with talking about this with people?

[Jen Brea]
Yeah, thank you so much for having me on. I started to get sick about 7 years ago, I had- –I can’t believe it’s been that long– I had a really high fever, that at its highest was about 104.7, and at first I thought it was just the flu. But as I got better, I remember trying to get up out of bed and being so dizzy that I walked straight into the door frame. And that begin this journey of essentially feeling like my immune system was falling apart. I had infection after infection pretty much every month for over the course of about a year, but in between I would feel normal. And as I got sicker and sicker I eventually end up bedridden. And every time I would try to go to the doctor and get a diagnosis or figure out what was wrong with me, because all of my lab tests would come back normal. I was told I wasn’t really sick, that everything was fine, and eventually as my symptoms became more and more apparent, that it was either in my head, that I was stressed or depressed, that I got dehydrated once was one hypothesis, and eventually I was diagnosed with conversion disorder which is sort of the modern-day name for hysteria. And the idea was that suddenly I was having all these symptoms because of some obscure trauma that I didn’t remember.

I was eventually diagnosed with ME, which is also often diagnosed as or called chronic fatigue syndrome. But it’s a disease that’s been with us probably for a very long time and occurred in outbreaks, in cluster outbreaks, there have been at least 70 documented around the world in the medical literature, and it can also happen to individuals. So what we know now is that many different infections can trigger it, and so to can things like surgery or a car accident or sometimes even a kind of severe chemical exposure. But for whatever reason, a certain number of people who will have those types of insults will develop these symptoms. And so for me it’s the symptoms, the key symptom is something called post exertional malaise, which is this dynamic that when you exert yourself cognitively or physically, you will “crash” and can often end up with all of your symptoms; your neurological symptoms, your gastrointestinal symptoms, your muscle symptoms, your weakness getting worse for days, weeks, and sometimes months, or even more. And so that’s sort of the core defining symptom of the illness and a lot of people also have cognitive dysfunction as well as something called POTS, or postural orthostatic tachycardia. And that’s kind of the key feature of the condition. And I also, in addition to POTS, I also have something called mast cell activation disorder. So these are different diagnoses that a lot of people kind of have around these cluster of conditions.

At the beginning I really had no idea what was going on with me, and I thought I had some crazy rare disease that maybe my doctors couldn’t diagnose because they’d never seen it before. And it was really, when I got my diagnosis and went online and found out that there were thousands of patients, representing millions around the world, who had for decades, many of them, been sick without any access to treatment or care, homebound, bedridden, that I started to decide that I had to do something to bring visibility to this often hidden community, and that’s why I decided to make a film.

[Eirenne]
Okay; this sounds exactly like what we do here on the podcast: bringing some more visibility to the little changes that happen. You documented your good days and your bad days and it was amazing to me to get to see the breadth of experience that you had. You know, the days where you went out and you could do things, and then you could see the price that you paid afterward. And being able to just so clearly see that you had parts of your life that were maybe the same kind of thing you had done before before, before illness set on you that you still have afterward, but that you had to modify and adapt how you approached it. And maybe you couldn’t do quite as much as you could before but you couldn’t– you didn’t have to do nothing, I suppose is the way I would approach that. That it wasn’t completely the end of your life but it did change basically everything.

So if you had to give the top few things that you wish somebody could have told you, that would have made it easier to make that transition and make those adaptations from Before Illness Life to With Illness Life, what would you have wanted to know? What would you want other people to know that coming into this now?

[Jen Brea]
So I would say that, at the beginning, it really did feel like it was the end of my life, and a part of it is that this is a spectrum condition, right? That some people are more affected than others. And for a lot of people the worst- the most, you know, a lot of people can be very severe at the beginning and get a little better over time and so I think that end- for me, getting to that place of feeling like I still have a life, I can still do some things, I can still create a life of value and meaning was, I think, both a process of finding a ways to get a little better so I did have enough function to be able to have a life and it was also adapting, right? And so I don’t think it’s either/or, I think it’s a combination of trying to figure out what are the things that are going to work for me that can help me get to get to a higher level of function, and then also trying to figure out, given this level of function, how can I design my life, hack my life, in order to make the world fit me essentially. And, you know, it’s a process of tricks, it’s also a process of prioritizing and figuring out what are the things that truly matter to me. What are the most essential things and how to kind of try to pare away everything else. So that was the process and I think at the beginning what would have helped me most- — at the very beginning I think it was, you know, getting a diagnosis and understanding how to best manage the condition is so crucial and that’s sort of the first step for anybody. I wish- — it took me only 18 months, which is actually relatively quick in the sense that the average is 5 years to get a diagnosis, but the online community and the support and knowledge of patients who had been, you know, been sick for longer, understanding how they lived, seeing that it was possible to live a life. I think knowing, getting a diagnosis early, knowing that there is this online community, I think that was really crucial to me.

So I would say that, if you think you have this condition, I think 1. trust your body and your experience, and if your doctor is denying that experience, find a new doctor or contest it. Like, I wish I had had more confidence in my own experience from the very beginning. You know your body, you know when something changes forever and isn’t right, and so trust that and in that experience and in that fact that you live with yourself everyday and, you know, there’s information there that can actually help you. So I think trust that and trust your instincts about what’s going on with you. And find- — and seek out help. There’s- — whether you’re dealing with ME or Ehlers-Danlos or multiple sclerosis or any of a number of chronic conditions. There are online communities that are vast and have people that are out there who I think will embrace you, will help you find the best doctors, access the best treatments, and so I would say that that has really– that was really a big part of my transition.

I think beyond getting that kind of advice and that care from the online community, I think, you know, part of it was in terms of my work. So I was fairly early into my illness, I decided to make a film and I was often bedridden for weeks, sometimes months at a time and would, you know, some days be able to work from bed for 4 or 5 hours on the film, sometimes would only have 10 minutes.

And the most important thing with this condition is to learn how to pace. That is, finding out what your limit is and staying within it. I’d say staying with- — 80% within what you think your limit is. And for me that was a process of trial and error, but it was also a process of getting humble and being humble about those limits and also, I had a friend who told me really early on, like, I’ve learned- — she said that she learned to the minute that it would even occur to her that she was doing too much, like, “oh, that door across the room is too far away” or “I really need to get off the phone right now.” The minute it would occur to her that it was too much, she would pull back, and because once you start experiencing the symptoms of the inflammation, you know, of the crash, it’s already too late. Like, you’ve already put your body into that state of doing too much, asking too much from it metabolically, and so you have to learn how to stay within your limits and for me, I’ve been able to tell before the crash comes, what the edge of that cliff is. And it’s taken a lot of time, of years of just observing myself, and figuring that out, but staying within my limits has helped me to actually be able to do more. And it’s a little counterintuitive, but it’s like the less you do, the more you can do, because you can sustain the effort.

So I learned how to pace, but also how to realize that, like, it doesn’t matter what your goal is, right? Like even something as kind of time-intensive and massive as making a film, like focus on the goal, but don’t worry how long it’s going to take to get there. Trust that you’ll be able to find a way to do it. And so, for me, it was just this process of taking 10 minutes here, 4 hours there, whatever it was that I could do, doing a little bit less than I thought I could, but making slow progress, you know, over every day or every week to meet that goal. And the irony is that I’m actually much more productive now than I was before I got sick, because before I got sick I was pulled in a thousand different directions. I often had a hard time deciding, you know, what I really wanted to do, what was most important, and I’d try to do everything because I was just interested in everything, and I was young and able-bodied. And now, it’s like, at any moment I have 1 goal, 1 thing that matters, and I just make slow progress towards it, kind of drip, drip, drip, you know? And what I kind of describe it as is becoming acquainted with this kind of geological time, right? Which is that, you know, kind of a single drop of water kind of dripping on a rock can create a canyon if given enough time. And that’s now how I work. It’s realizing I can’t do everything, and I can’t work all of the time, but I can do small amounts, and actually doing a small amount with that focus? You can achieve much, much more than you can if you, I think, the way most people work. So that was kind of my process.

So, and then I guess the 3rd thing besides pacing and geological time is- — let me think about that. What would I say? I mean, I think for this disease, specifically, there are no tests that can tell you what treatments you should try, not really. And so, at least right now, where we are in the state of the research, a lot of it is about self experimentation. But, there are drugs on the market that can help, and there are treatments that can help that have been approved for other conditions but that aren’t specifically made for patients with ME. I, you know, have been helped personally by antiviral medications, by a drug called Mestinon which is also prescribed in myasthenia gravis and Sjögrens. And they’ve found that a subset of patients with this condition have auto-antibodies to acetylcholine, which is what causes the muscle weakness, I think. And so that drug has helped me tremendously with my muscle weakness because it basically increases the amount of circulating acetylcholine you have. And then I’m also taking Florinef, which is a drug for POTS.

And I say that not because those are drugs that you should take, or that they will help you — everything that I’ve tried that has helped me has had no effect for some people, and has actually made other people worse. But there are tools that are out there that can help you get to a higher level of function, and the right tools, the right combination or cocktail of those tools are gonna differ for each person, so it’s about finding a doctor who can prescribe these different treatments, who can work with you and monitor your symptoms and response and really, just sort of, you know, say what is the most reasonable thing I can try, that has the greatest chance of benefit and the lowest risk of harm. Try that thing, and see if it works, and if it doesn’t try something else. And it’s taken a very long time; I’ve tries so many different thing, but these 3 things along with, you know, certain dietary changes, and certain kind of the pacing and hacking of my life has helped me achieve a much, much higher level of function. So I want to give everyone the hope that it is possible, but it’s possible if- — but you have to really kind of push for it and take your care into your own hands. And that’s a lot to ask of someone who is this sick, but you know, it’s the only way, really. And I think- — but I do, I want to give hope that even if there’s not, like, a really clear, like you know, recipe or blueprint, like if you do this then you’ll have this outcome, there are ways to cobble together, I think, a treatment program. And so I would encourage you to seek that and to, I guess, give that hope that that is possible.

[Eirenne]
Self-advocacy really is vital in basically everything, but it’s even more important for folks like us, who have such significant medical needs. When chronic illness takes over, it’s out of the usual ballpark for so many doctors that, if you don’t have a great doctor, they might just go, “uh, I don’t know,” shrug, and send you home. And if you can’t keep advocating for yourself, it can really have a noticeably negative impact, so I definitely agree with that. It’s one of those things that helped me, too, is having to know how to talk to the doctors and how to get them to listen. And when you can’t, you’re absolutely right; you find a new one. I had a doctor that would just write me off all the time, tell me he was convinced that I had this other thing that I have absolutely no signs of, because, well, that’s a thing that fat people have, and so that would make more sense. And it’s just, it’s ridiculous how some doctors will do that sort of thing, so being able to go, “no, you’re going to listen to me” [laughter] is important and it’s a hard thing to change and to adjust to doing, if you’re not used to it.

[Jen Brea]
It’s absolutely important, and what you also realize is that, if you go to 10 different doctors, you’ll get 10 different opinions. Which all, often, stated with equal amounts of, like, certainty, you know? So, I am reaching this point where everyone was saying something totally different and they were all equally certain they were right. [laughter] And so, with that you’re like, okay, these are opinions. But you have to filter it through, I think, you’re own sense of “does this make sense? Is this right?” And to– and again, I think doctors– there are really wonderful doctors out there, who will work with you, who will help, and will listen and who have the experience and the tools to– for your condition.

And especially like, you have a rare genetic disease, you can’t walk into any primary care doctor’s office and have them understand what’s happening to you. And similarly with me, I have a condition that isn’t taught in medical school, so it’s, you know, it’s why I think getting recommendations from other patients is so crucial to be able to find the right experts to give you that help. I think in this country, for ME, there are probably between 10 and 20 clinicians who really have experience treating this specific condition. So it’s a quite- — with like 6 months waiting lists apiece. So it’s really quite at a crisis in terms of the medical education and the access to care and so one of the things that I’m really trying to do is work to expand the pool of physicians who have the training to help.

The one last tip that I realized, which you kind of put back into my mind, is embrace the accessibility aid. So, I actually didn’t have a lot of a problem with this. When I found my wheelchair, my electric wheelchair that I love, it was- — it’s actually funny, I think my husband had a harder time with it. Like, we were using a kind of push chair, he would push me, and I think he didn’t want to buy the electric chair because he thought that it would- — it was almost like a symbol of no return? It was like, if I have this really cheap wheelchair, that I have to push you around in that’s horrible, it’s because this is temporary and then we’ll figure it out, and then we’ll be normal again, right? But if we invest in the power chair, then somehow in his mind it was, like, then we’re really accepting that this is the new reality?

And I’ve had a lot of friends who, like, won’t go- — who are basically homebound, so many people are homebound and a chair wouldn’t help them to get out, but I know people who are homebound because they won’t use their chair. Because there’s something really hard about being seen in a wheelchair? And about making that transition. And I think what I would say to anybody who feels, kind of, concerned or self-conscious or sheepish about getting- — about using a cane, about using a power chair, the awkwardness of that transition, I think from a- — for everyone that I know that has made it, is fairly quickly overcome by the joy you have from the freedom that you get back. The freedom to be able to go out, go to a museum, be in public, you know, go and buy yourself a coffee. Just do these simple things for yourself again that you wouldn’t be able to do without the mobility device. I really cannot recommend them more highly; I know some doctors, like, don’t want their patients to use them, but if it gives you freedom, it is so transformational. And it was for me.

Some of these devices were really expensive, and they aren’t covered by insurance unless you need them in your home, which I find so ridiculous. But I crowdfunded mine on GoFundMe, and people pulled together and raised the money for it. And so I will for- — I have 12,000 Twitter followers, I will retweet any wheelchair crowdfunding campaign from now until the end of time, because I am just so, I feel so passionately that it can be so lifechanging. So, yeah.

[Eirenne]
Absolutely. It’s not a symbol of giving up, which is how a lot of people see it. It’s “well, if I do this then that’s the end of the line, I’m giving up.” And acceptance isn’t the same thing as giving up, ’cause, you can always go backwards. Like, not every single person will, but just because you need a thing now doesn’t mean you’re always going to need that specific mobility device. Embrace what you need, and have the freedom of it, and then if you don’t need it later, then you don’t need it later. But don’t rob yourself of the ability to do the things you want to do because you’re afraid you’re giving up.

[Jen Brea]
Absolutely.

[Eirenne]
Jen, thank you so much for joining us today. You’ve given so many good tips and I am certain that people are going to find this a very enlightening look at how to adjust, how to adapt, and how to realize that this doesn’t have to be the end of their life, just a change. And that they can still do things, still make, still exist, and they don’t have to fade away and just give up on their life. And I’m so grateful you decided to join us today.

[Jen Brea]
Thank you so much for having me. We are building a community of support and activism and fun, and for people who are- — with ME, but really truly all are welcome, and with other disabilities. So it’s called MEAction.net, so please come find us, and I’m at @jenbrea on Twitter and I read my mentions whenever I can, so feel free to also reach out to me there.

[Eirenne]
Excellent, thank you so much.

[Jen Brea]
Thank you.

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