What women with chronic illness want healthy people to know during the COVID-19 crisis.

By Taylyn Washington-Harmon
May 05, 2020
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A near-constant sense of isolation and loss are things many of us are just getting used to. But people who have a chronic illness know these all too well.

Jodi Taub, LCSW, a New York-based psychotherapist who lives an immune system disorder, has noticed that her fellow chronically ill clients are more understanding of the ups and downs of quarantine life. “They're used to unpredictability and their days being upended. You can't choose when you have a flare or get sick,” Taub tells Health. “I've been helping my patients to recognize that this is fight-or-flight, that everyone's in trauma right now.” 

An estimated 40 million people have a chronic illness that limits their daily activities. Despite these numbers, many have long felt dismissed and unheard, and that's been true during the coronavirus pandemic as well. Between the increased difficulty in getting groceries delivered and the lack of access to pertinent health care, those with chronic illness fear that they'll be further disenfranchised and their health take a turn for the worse as the coronavirus crisis continues.

Health spoke to five women with different chronic illnesses so those considered “healthy” or able-bodied can understand what life is like with a chronic condition in an unprecedented pandemic. (These interviews have been edited and condensed for clarity.)    

Jodi Taub, Primary Immunodeficiency

I'm a therapist who specializes in chronic illness. I also know what it's like to have one. My specific condition, primary immunodeficiency, means I don't have antibodies to fight off disease. In order to live, I have to get plasma every two weeks. I receive immunoglobulin, plasma that contains antibodies from other people to fight off disease.

The coronavirus situation is very relatable to me because I still get, even with my plasma, chronic persistent infections. I'm on IV antibiotics every day. I have to be very cautious of germs. I have to wear a mask in the winter and on the plane. And when I go to the doctor's office, I move seats if someone is coughing. If my patients are sick, we have to do telehealth. These protective processes have been part of my world all the time. Everything could be like coronavirus to me. 

I [used to] live a fairly normal way of life—work, travel—just with a lot of modifications in order to keep myself healthy. Now, I'm on strict precaution. I can't come in contact with anybody. I had to leave New York City because I can't access my health care in a safe way. I was supposed to have surgery on my IV port and it was cancelled. My boyfriend and I moved to Ohio to stay with our friends. Ohio started strict precautions before New York City did, so it was a safe place for me to go. We can actually access grocery delivery here. When it isn’t available, our friends are able to help.

The nice thing that's come out of coronavirus is that states have allowed telehealth to happen across state lines. My patients are dealing with a variety of different things because different things happen each week. I have patients who have had coronavirus and are at home dealing with being sick. I have patients who are at home by themselves and dealing with isolation and loneliness. I have some patients going to the homes of their in-laws or friends and are dealing with living with other people.

There's never been a time in recent American history where every part of your life has been uprooted. My patients with chronic illness have been doing fairly well because they've really been honing in on their skill sets—creating routines and centering on things that they're grateful for, while also allowing themselves to feel. We recognize that this is going to be up and down for a little while.

I’m asking healthy people to be mindful that this can be more challenging for us because there's a secondary anxiety around knowing we may not fare as well as others. It may take longer for us to integrate back into society. Those who don't manage health care conditions don’t have to worry about what happens if their medicine isn't available or if they can't see their doctor. We're dealing with a different set of options. We have greater fears and may be at more risk. 

Melissa Marans, Dermatomyositis

With dermatomyositis, my immune system cannibalizes my muscles, thinking that they're a dangerous outside agent. It leaves me feeling very weak and immobile some days, and I'm only able to do as little as wash my face, brush my teeth, and get back in bed. When I'm having a really good day, I might be able to go to the grocery store and come home and rest—maybe take a gentle restorative yoga class, and that's my capacity.

My heart is also a muscle, so I'm going to a cardiologist frequently to monitor my heart. It brings on a lot of fatigue, but certain parts of my life just don't stop. I still have to wash my hair, but how does it feel to wash your hair when you're using very limited muscle mass? Everyday movements have me feeling weak and achy, and I'm often in a lot of pain at the end of the day. But you could look at me and think I'm totally fine and healthy. 

Meanwhile, I keep hearing from those in chronic illness circles that healthy people understand what it's like for us because now they're living in isolation. I do think some of this is definitely true, but a huge thing that people aren't realizing is that for someone who is healthy, this is temporary. When this is all over, they have a choice to remain socially distant from people. For the rest of us, we don't have that choice. When this is all over, when people are allowed to start going out again, we'll still be right where we were before the pandemic started, by and large inside our homes, doing the best we can. 

Part of the reason I'm able to function and get through is my positive attitude. I don't like spending a lot of my day thinking about it. I don't jump out of bed without feeling some type of pain. The only way I can maintain normalcy is by pulling myself together and pretending that everything is fine. People don't see my illness and that makes it hard. When I was first diagnosed, I was essentially immobile and still working at the time, but people didn't understand if I was really fine because I "looked" okay.

My physical therapist told me that I needed to make myself look sick and all that did for me was remind me that we're living in a world that doesn't recognize or accommodate people with chronic illnesses. I felt that way at the beginning of the pandemic, when a lot of reports mentioned that coronavirus mainly affects those with chronic conditions or the elderly. I would hear that, but at the end of the day, that's me—that I don't really matter. I had friends downplaying coronavirus as "just a flu," but for me it's not "just a flu." 

I think that the most important thing that I want healthy people to know is that when this is all over, we're still going to be here dealing with the same circumstances. All of the feelings they're having about isolation, I want them to remember them so that they can channel that into compassion and empathy for chronically ill people, and channeling that into creating a better world for us to be a part of. This hasn't changed my world so much that it's earth-shattering. That happened for me five years ago when I got sick and was diagnosed. That's when my whole world shattered. So I've been training for this type of social isolation for years now. My life is continuing on as normal. 

Sarah Bence, Endometriosis

I'm a full-time freelance writer in Michigan living with endometriosis. I also have a master's degree in occupational therapy. I was working in a pediatric therapy clinic before the pandemic hit and I was laid off. I had just started the job a month ago, so it was a lot less painful for me than other people. 

I was diagnosed with endometriosis via laparoscopic surgery in 2018, but I'd dealt with symptoms for a while before that. It takes on average six to 10 years to get an endometriosis diagnosis, but it took me about five. It runs in my family, so you would have thought it would've taken less time to get diagnosed. I also have chronic pain and a lot of digestive symptoms that I'm seeing specialists about, but I'm still working through the medical mystery. For me, this means a lot of invasive diagnostic procedures and trialing new-on-the-market pharmaceuticals. 

In terms of endometriosis, I've had to adjust the kinds of activities that I do, learn how to rest a lot more, and cut down on social engagement that could add further stress to my body. I think this prepared me really well for the stay-at-home order and social distancing. One of the biggest impacts is that I'm not able to go to pelvic physical therapy to help ease my pains anymore. There's a limit to what you can do remotely. I’ve also been experiencing worse pain flares due to increased stress levels.

I usually travel over an hour to go to the hospital where my specialists are, and that's one of the big centers of patients with coronavirus in Michigan. So I'm having important doctor appointments over the phone. You're not able to connect in the same way, so that's been frustrating. But, I feel like in some ways I'm better prepared than most people who don't have chronic illnesses. I just have to accept that it is what it is and when the pandemic ends, I'm able to see my doctors again in the more in-depth ways that I need. I'm able to get my medicine filled from the pharmacy, so I’m in more of a maintenance period right now rather than moving forward with new treatments.

I hope that after the pandemic people will have more sympathy, understanding, and empathy for what those with chronic illness are going through. The barriers most people are facing now—from community mobility, to working remotely, to accessing unemployment benefits—are ones that many of us with chronic illness have dealt with. And we've had minimal to no institutional support for years. I want able-bodied people to reflect on how frustrating this is for them and understand that those with chronic illness are going through this too, but with an illness on top of it. There are a lot of really important lessons to be learned from the pandemic, and I just hope we take the positives forward rather than leaving them in this tough period.

Gabrielle Pharms, Bipolar Disorder and Depression

I was diagnosed with bipolar disorder when I was 21, so 12 years ago. I didn't have any symptoms as a teenager; I didn't struggle with depression or anything. What triggered it for me was a series of back-to-back deaths in my family. I had a really bad anxiety attack on the freeway and I haven't been right ever since.

I also had a series of back-to-back misdiagnoses. Some doctors thought it was just depression or anxiety, but then I would have ups and downs that my parents noticed. I moved to New Jersey when I was 21 and went to a doctor there. I told him all of my symptoms and that's when he finally nailed it down and said, “You're not clinically depressed, that's just a part of what you have, but you're bipolar.” I remember being so devastated. And then being a woman of color, that's not something that you talk about. It's not something culturally that's even acknowledged.

It's been a lot dealing with the pandemic because I was working as a copywriter for a creative marketing agency and they laid me off because they've lost some of their clients due to the virus. It's been a challenge, but I'm managing. Many publications are cutting freelance budgets. Between that and dealing with depression, it's been an uphill battle for me. 

Before the pandemic, I hadn't had any episodes of the extreme, so I went to a psychiatrist once every 2-3 months, and I'm on a few different medicines to treat it. I am very social, so I'm grateful to have a supportive husband, parents, and friends to help me through my journey with this disorder. Prior to the pandemic I was sleeping just fine and doing fine. Now I have my good days and bad days. Between that, the pandemic itself, and the news, it has affected me in a way that I hadn't anticipated in a while because I haven't had extremes in years. I've stabilized in a lot of ways. Now, I haven't had more than four hours of sleep, and I experience racing thoughts and intense empathy. When I read a news article, interview, or story, or talk about how coronavirus has affected a family or person, I'll burst into tears. I only check the news once a day now just to help with my mental well-being. 

I have a bulk prescription of my medicine, and I just saw my psychiatrist virtually because we're all staying home. That was great because he's been seeing anxiety and depression increase in some of his patients and wanted to check on me. I told him I'm doing okay, save for not sleeping and racing thoughts. But at what point is this my bipolar disorder—or me being affected like everyone else and hurting?

A big thing that I think people should know and feel passionate about is making sure you don't compare your productivity with everyone else's, whether it's increased or decreased. We're in a pandemic, it's not a productivity contest. We just need to survive at this point. We're just all trying to make it.

Lucille Whiting, Ulcerative Interstitial Cystitis

I'm 38, and I have chronic ulcerative interstitial cystitis. You can compare it to having a very bad urine infection—the kind where you pee blood, the kind where you can't sit down—but all the time. It's not like any other chronic illness: it's not curable,  not treatable. The only thing they can do is numb the nerve endings inside of my bladder so I'm less aware of the pain. But the medicine I take to do that has some funny side effects. They can make you extremely forgetful. (I lose my keys on the floor in supermarkets a lot.) You can have loss of sensation in your extremities. You can have disturbed sleep. When you're in pain like that, you can't think. 

I run a business from home that I've built up around having a chronic illness because I can't really do much else. Over the past few years, I've reached out to people and said, "I'd love to go to that conference, I'd love to go to that meetup!" but it's not possible for me. When I've asked for recorded videos to be available afterwards, I've heard "that's not possible, we can't do that." Now, all of a sudden there's proof that it's possible. Everyone's having Zoom conferences. Everyone's putting their live events over the Internet. It was possible, and there must be so many people in the chronic illness community who have missed out for so long. That's frustrating because they've never actually gone to the effort until they were going through the situation themselves. People are now isolated, but they're not living with the pain of a chronic illness.

Before the pandemic, I was very frustrated with people's understanding of chronically ill people, and they don't understand it now. I don't think most people can understand how to manage yourself, manage your pain, manage your fatigue day in and day out. That's not something most people can comprehend. Most people think you're sick and you get better or you don't get better and you die. They don't understand this mode of living where you'll constantly be the same. I'm not able to get my prescriptions due to long waiting lists and busy pharmacy phone lines. There's even been a lack of rubbing alcohol, which I use to clean before certain procedures.

There seems to be an awful lot of people comparing their few weeks in isolation to being in prison and saying that the experience is unbearable. While I totally acknowledge that this might be the case for people who suffer from certain conditions, for the vast majority of people, it's just a bit farfetched. It is mildly irritating that some people seem to think my normal is so awful. There really is no comparison—they're not in pain, for one thing.  As someone who's lived in a relatively isolated way for a very long time, it's completely possible to build a life and thrive.

The information in this story is accurate as of press time. However, as the situation surrounding COVID-19 continues to evolve, it's possible that some data have changed since publication. While Health is trying to keep our stories as up-to-date as possible, we also encourage readers to stay informed on news and recommendations for their own communities by using the CDC, WHO, and their local public health department as resources.

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