Encounters With The Invisible: 20 Years Later

The first memoir about ME that I ever read was Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome by Dorothy Wall, published in 2005. I remember thinking: if I were to ever write a book about this disease, I want it to be like this book. Now that I am writing a book about my ME experience, I appreciate the brilliance of Encounters even more. I’m on a mission to get you to read this book, too.

Encounters offers the reader two views of ME, the personal and the societal. Wall describes what it feels like to have ME, to crash, and to eventually climb out of that crash. She captures the lonely devastation of being bedridden and unable to speak. But she offers something else, too. Wall grounds her own experience of illness in the broader context of the history of ME/CFS and other complex, invisible illnesses. If you are familiar with The Invisible Kingdom by Meghan O’Rourke, nominated for the 2022 National Book Award, then think of Encounters as an ancestor of that book.

Encounters is, first and foremost, memoir. Wall wrote, “This book focuses primarily on my rude confrontation with acute illness beginning in the fall of 1995, when I became more ill than ever, and the slow restitching of body and soul that followed.” I can say from personal experience, now, that this writing goal is hard enough. Yet Wall realized that ME was “an unsettling roadmap for the illness experience of the future, in which one group of patients is well served by the advances of biomedicine, and another is left behind . . . I wrote this book to illuminate these multilayered struggles and to pull this illness from confusion, obscurity, and distortion, to make it visible.”

By the time I read Encounters in 2005, I was already involved in ME advocacy and was well-acquainted with the history of neglect and denial in the federal government. Perhaps because of my legal training, I saw this as a political/scientific issue that had personal impact. Wall’s book helped me start to bring these two contexts together, to see the way politics and science intertwined with personal experience. The book also helped me think about systemic change. I knew that people with ME received dismal medical care, but up to that point, I had given almost no thought to the way the practice of medicine would have to change for everyone to address the needs of people with complex, chronic illnesses. Encounters changed the way I thought about my own illness and about the challenges facing our community as a whole.

I reread Encounters last year and loved it even more than I did in 2005. The book remains highly relevant to ME today. The personal experience of having ME is unchanged—the physical unraveling, the loneliness of how other people treat you, the effort it takes to get through a single day. Sadly, the social commentary is also not out of date. We know more about ME than 20 years ago, but we still do not have adequate research funding, a biomarker, or a treatment. If you haven’t read Encounters before, I hope you will now.

To celebrate the 20^th anniversary of Encounters, I interviewed Dorothy Wall via email. Our conversation has been edited for clarity.

Edited to add: In celebration of the 20th anniversary, Dorothy has very kindly offered to send a new copy of Encounters at no charge to anyone who emails her their mailing address at dorothy@dorothywall.com, while supplies last!

First, Dorothy, how is your health and how are you doing now?

I’m doing pretty well and leading a quite full life, though it takes place mostly at home. I work with writing clients remotely, do my own writing, visit on Zoom, putter around the house. I’ve had some ups and downs–I spent some years recovering from cancer (2010), and some years recovering from the first dose of the Pfizer Covid vaccine (2020) which exacerbated my symptoms–but otherwise I’m holding up and enjoying life as much as possible.

You wrote that “coming out” as a seriously ill person was “a process laden with ambivalence.” Why did you write the book, given how uncomfortable you were with disclosure?

I was ambivalent, but I was also a writer who had been through an intense, complex illness experience that was part of a larger, fascinating illness story. How could I not write about that? Mainly, I wanted to make the private experience of chronic illness more visible. There can be such a gap between what others see and think and what the ill person experiences, and trying to close that gap felt vital to me. It’s only by “coming out” and sharing stories that the chronically ill become seen and hopefully better understood. As many in the disability community have said, it’s important that we exist in public.

What can you tell me about the process of writing the book?

I worked on Encounters with the Invisible for 8 years, so my process was slow. I initially started writing essays, which enabled me to focus on one small piece at a time, such as “Seeing” the ill person, or “Listening” to him or her. Only later did I turn these essays into a book. I don’t think I would have taken on the project if I had started out with a full book in mind. The hardest part was the research, since I wanted to include the medical, cultural and historical story along with my personal story. But I had valuable help from ME/CFS researchers, advocates, physicians and patients, and great support from my husband who did library runs as needed. Twenty-five or so years ago the online resources were not there the way they are today!

What did you hope the book would offer the reader? What impact did you hope it would have in the world? Has reality matched your expectations?

I wanted people with ME/CFS to be able to hand Encounters to friends, family members or physicians and say, “Read this, and you’ll understand.” From the feedback I received, it did seem like that happened. I was actually quite amazed by the book’s reception, which was overwhelmingly positive. After 8 years of immersion in writing and research, I suddenly surfaced and realized, “Oh right, people are actually going to read this book!” I received many wonderful emails from readers thanking me and telling me how valuable the book had been to them. That was enormously gratifying. I did a fair amount of promotion, mostly online, some print media and radio. Clearly there was an audience interested in the under-reported story of invisible chronic illness generally, and ME/CFS specifically. I was delighted to be a part of the much-needed conversation.

Was writing the book therapeutic or helpful for you personally?

Definitely. Writing was how I processed all I had gone through, came to terms with my illness experience, understood it better. It was like rearranging a cluttered room, putting order to events that were chaotic in the moment but later settled into something that made a little more sense. And after publication, I felt very supported by all the feedback from readers.

You wrote that sometimes it was easier to conceal your illness than “to face the misunderstandings, projections, and well-meaning suggestions of others with little or no knowledge of this illness.” Once you came out in this very public way, how did the book impact your relationships?

The impact was positive, for sure. Those who read the book seemed to have a fuller and more compassionate understanding of the illness experience–at least the ones I heard from did. And I suspect even those who didn’t actually read the book or who only glanced at it still were more likely to understand that ME/CFS was a serious illness and needed to be taken seriously.

Why was it important to tell the history of CFIDS (chronic fatigue and immune dysfunction syndrome, a former name for ME/CFS) and related illnesses as part of your memoir?

The ME/CFS story is not an isolated one. It’s part of the larger story of invisible and poorly understood illnesses–fibromyalgia, Gulf War illness, multiple chemical sensitivities, chronic Lyme disease. I became fascinated by the stories of these other illnesses and the parallels with ME/CFS, especially the ongoing fight for visibility and credibility. Viewing the ME/CFS story in this context reveals the role the medical establishment has played in stigmatizing chronic illnesses. As has been said many times, Western medicine focuses on acute illness and doesn’t deal well with chronic illness. That fact points to a problem with medical research, training and institutions, not with the patient who has a chronic illness. Shifting perspective in this way is crucial to seeing ME/CFS as the major, often life-altering illness that it is.  

You wrote a great deal in Encounters about the failings of healthcare when it comes to diseases like ME. How do you view the healthcare system now, as it pertains to invisible illnesses?

I’d say we still have a long way to go. Medical research and clinical education still does not focus nearly enough on ME/CFS or other invisible and chronic illnesses, and until it does, patients will continue to see providers who are either minimally informed or uninformed about our illness. Even when providers are informed, they can only treat symptoms, not the disease itself. When I was working on Encounters with the Invisible and interviewing researchers in 2003-04, some were suggesting that we’d have a diagnostic biomarker within 5 years. Obviously that didn’t happen, and until it does, it’s far too easy for doctors to dismiss people with ME/CFS with a shrug: “Your blood work is fine.”

When you look at ME politics and healthcare today, are things better than in 2005? What are our biggest challenges?

Yes, things are better, but still not nearly where they need to be. There are many ongoing challenges, primarily the need for increased NIH investment in ME/CFS research. We need a research definition so studies can select subjects more accurately. We need to create a clinical trials network for ME/CFS to improve patient recruitment and data quality, and to more readily target subsets of patients. We need improved medical education, more public awareness, and on and on. Advocacy can only do so much if we don’t have a better understanding of the biological mechanisms of ME/CFS, and we won’t develop that fuller understanding until there’s a significantly greater investment in federal ME/CFS research.

I think that’s the vicious circle of advocacy: we need great research investment to find biomarkers, but without biomarkers it has been impossible to get the research investment we need. What about the impact of Long COVID and the present political climate we find ourselves in?

Initially, Long COVID had a positive impact on research by increasing public and medical focus on post-viral illness. In 2021 Congress allocated $1.15 billion in funding over 4 years, called the RECOVER initiative, to study the long-term effects of SARS-CoV-2 infection. Although ME/CFS is not a big focus of the funding, one recent RECOVER study led by Suzanne Vernon, Ph.D., through the University of Utah, found that 4.5% of those with Long COVID met the Institute of Medicine’s criteria for ME/CFS, which translates to a 15-fold increase in ME/CFS in the U.S. since COVID appeared. And this is believed to be an undercount. Other RECOVER studies may help identify ME/CFS subsets. Yet NIH funding of ME/CFS research has actually declined from $14.6 million in 2021 to under $13 million/year since.

Now, despite the fact that our new Secretary of Health and Human Services, Robert F. Kennedy, Jr., has promised a broader focus on chronic illness, under President Trump’s directives, he has slashed staff and funding at the CDC and NIH. NIH funding was cut by 1.8 to 2.7 billion dollars in the first three months of 2025, and the real-world impacts of these policies continue to mount. The ME/CFS Collaborative Research Center at Columbia lost its funding and was closed. The Long COVID RECOVER study was canceled then reinstated, but it is not clear how much other Long COVID funding was restored. Obviously, when research is halted, cut or dismantled, medical advances suffer.

You wrote a great deal about the name controversy, and if I recall correctly, you participated in some advocacy efforts like Rich Carson’s “A Fair Name” back in 2007. What are your thoughts about the name now?

It’s heartbreaking, actually, to reflect on how much energy has gone into trying to change the trivializing name “chronic fatigue syndrome,” with its misleading focus on fatigue, to something that reflects the seriousness of this illness, which affects multiple body systems. It’s infuriating that the Centers for Disease Control (CDC) in 1988 chose such a dismissive name–when they had and considered better alternatives, particularly myalgic encephalomyelitis (ME)–leading to the decades-long struggle by patients, advocates and a dedicated group of physicians and researchers to undo the damage.

There has been vigorous debate about the replacement name, but many advocates focused on ME, which was already in the scientific literature, or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a combination that provided some continuity between the new name and old. While the National Institutes of Health (NIH) and CDC shifted to the name ME/CFS almost 10 years ago, that shift hasn’t reduced stigma as much as hoped. I understand why many people and organizations use ME alone, decoupling it from CFS altogether. I use ME/CFS to align with the recent medical literature and governmental health agencies, but the choice to use ME makes an important statement, too.  

How would you describe your orientation or relationship to advocacy and the ME community now? Has that changed since the book was published?

I’ve continued to write a few articles and reviews about ME/CFS, such as an article in the AMA Journal of Ethics, “The Importance of Listening in Treating Invisible Illness and Long-haul Covid 19,” or a review of Emily Abel’s book, Sick and Tired: An Intimate History of Fatigue for  www.healthrising.org. But I haven’t been as involved with ME/CFS advocacy. I was pretty drained after completing both the book and the promotional efforts. I stepped back to recuperate and focus more on family and my ongoing writing and client work, which is more than enough!

What would you update or change about the book now?

Twenty years later, the science presented in Encounters with the Invisible is of course out of date. There’s been a steady stream of research into ME/CFS, though most studies continue to be small, lacking the robust funding from the NIH that is needed. There’s been ongoing research into exercise intolerance, gut microbiome dysfunction, molecular mechanisms, viral reactivation, brain, metabolic and immune issues, and more. So all of these areas would need updating. The name-change story would need an update, and the Covid impact would need to be included. A lot has changed in 20 years!

Identity is a recurring theme in the book, such as your uncertainty about identifying as a disabled person. Where are you now? Has illness continued to shape your identity?

Yes, whether or not to identify as a disabled person has been an ongoing question. When you can “pass” as healthy, when you have no obvious outward signs of illness, identifying as an ill person is complicated. Why bring my physical limits into the conversation if I don’t have to? Why deal with other people’s misunderstandings and reactions?

At this point, most people in my life know of my limits, so I don’t confront those questions the way I did when younger. I have a chronic illness that constrains me in some ways–I can’t walk far, can’t travel easily or very far, have chronic sore throats that often restrict how much I can talk–and those things do shape my identity in unavoidable ways. But I think I’m more settled into a life with some physical constraints than I used to be; it’s not front and center, just part of how I live.

Interestingly, Covid has changed my life significantly. Because the first Pfizer vaccine I received triggered a worsening of my ME/CFS–it took me 2 ½ years to recover–I’ve been unable to vaccinate further. So I rarely go to indoor gatherings, I mask when I’m around people, and so forth. That does shape how others perceive me and how I see myself.

What do you wish you could tell your younger self when your health worsened so dramatically in 1980, two years into your illness, and again in 1995?

Oh boy! That’s a question that really hits home. I wish I could tell that younger self to rest more, demand more support, speak up more, not to feel I had to soldier on alone as much as I did in those early years. Unfortunately, that’s a tall order. When I did try to speak up, to let others know what I was experiencing, the dismissive push-back was painful. It often felt easier to just manage on my own. In the face of almost complete lack of understanding from physicians and the public at large in those earlier days, getting understanding from friends and family was an uphill climb.

I’m in a very different place today, as is the ME/CFS community. Most of my friends and family now recognize what I’m dealing with, at least to some degree, so I have a support system that I didn’t used to have. While my primary care physician doesn’t know much about ME/CFS, she trusts what I tell her. That acceptance and support makes all the difference. As is often said, it’s other people’s uninformed or stereotyped attitudes toward disability, not the disability itself, that creates barriers and difficulties.

What have you learned since you finished writing Encounters in 2005 about managing and accepting your illness?

Don’t do too much! That’s my husband’s constant reminder to me, since I’m always pushing to do as much as I can. I think I’m pretty good at pacing myself, but I do still push, ie., my throat is on edge and I really shouldn’t talk to a friend right now, but I do anyway; I’m sinking with fatigue and shouldn’t take a walk today, but maybe just to the corner.

Also, because I’m now in my 70s, I’m dealing with aging as well as ME/CFS, and sometimes it’s hard to separate the two. Am I tired because I can’t expect myself to perform at the level I did 10 or 15 years ago, or because of my illness? Both illness and aging are about accepting limits, letting go of those things you can’t do anymore and figuring out ways to still do what’s important and meaningful. I visit with friends and family on Zoom or Facetime rather than travel, and email or text when I can’t talk. I confess it’s hard sometimes to see my friends and family traveling in their retirement and to know I can’t do that, but generally I’d say I’m pretty good at managing and accepting illness. I’m very fortunate that the work I do–working with writers and doing my own writing–I can do in my bedroom.

What do you hope new readers today can learn from Encounters?

I think today’s readers of Encounters will see both a familiar illness story and an historical view that it’s important we not forget. The chronic illness experience I describe is in some ways universal, such as dealing with the day-to-day struggles, the adjustment to a different life. But illness is also embedded in an historical moment. Encounters focuses primarily on the years 1995-1999 when my health worsened, but it sweeps back to the years of my initial illness following a severe case of mononucleosis in 1978, as well as to earlier epidemics of poorly understood fatiguing illnesses in the late 1800s and early 1900s, including neurasthenia, “atypical polio” and others. I hope this expansive lens gives readers a sense of the broader story that they are a part of, whether they’re the one who is ill or have a friend or family member who is. When you see the wide-angle view, along with the daily nitty-gritty, hopefully you feel better understood and less alone with your own illness story–and appreciative of living with ME/CFS in 2025 rather than in earlier times!