How to navigate a chronic illness

In 2020, Dave Venus couldn’t catch a break. First, he got sick with a mysterious illness that caused him constant fatigue. Then, a week before his wife, Claire, gave birth to their daughter, both of them got Covid-19. Dave couldn’t be in the delivery room. After the birth, while Claire made every effort to recover and care for the newborn, Dave was diagnosed as having H. pylori, a bacteria that can infect the stomach and small intestine, likely the trigger of his initial sudden illness. Claire’s Covid cleared up, but Dave’s never did. He developed an array of long Covid symptoms: tingling hands and feet, crushing pressure on his chest, heart racing like he’d run a marathon. The ongoing symptoms made it impossible for him to do even small tasks around the house, let alone return to his job as a physical trainer. But his bloodwork looked fine, and doctors said there was nothing else to do.

“I became obsessed with finding solutions,” Claire said. “I took to Twitter, where people were talking about going to Germany and having their blood cleaned, and there were osteopaths and floatation tanks and all the other kinds of stress relief stuff.” She knew these treatments weren’t likely to be effective, but, she said, “I was just desperate to try and help him heal.” Dave, on the other hand, tended to look for solace in prayer and meditation.

“I just felt the sickness was stalking me and I was exhausted trying to keep two steps ahead of it,” Dave said. The ensuing journey for Dave, with his chronic illness, and Claire, as his primary supporter, would be long, winding, and unpredictable.

Dave’s experience isn’t unique. And it reflects a problem bigger than even long Covid. The incidence of chronic illness is growing rapidly, and today six in 10 Americans have at least one chronic disease.

These include widespread diseases like Type 2 diabetes and hypertension, as well as rapidly rising autoimmune diseases like lupus, inflammatory bowel disease, Type 1 diabetes, and dozens of other disorders that now affect one in five Americans. Some autoimmune conditions can hit in the prime of life, meaning that more people are grappling with the implications of living with chronic illness for decades. Long Covid, which has an autoimmune component, accelerated and highlighted this trend. Even many types of cancer, with new management techniques, have become chronic illnesses. Most people today either struggle with a chronic illness or know someone who does.

These conditions challenge many of the cultural narratives about illness that underlie our medical system: that sickness should be fixed, that we address disease with medical interventions and get better on a certain timeline, that we overcome. Instead, people with chronic illness face immense uncertainty about the duration and trajectory of their diseases, often live without clear medical explanations and guidelines, and typically experience cycles of worse and better health rather than a neat linear path back to wellness.

As a result, whether you have a chronic illness or know someone who does, it can be difficult to figure out how to process the new reality and find ways to create a fulfilling life in the context of uncertainty and new constraints. Here are some ideas from patients, supporters, and health care practitioners.

It’s important to acknowledge grief

We tend to associate grief with death and bereavement, but chronic conditions also come with loss and grieving. “You might lose all sorts of things through illness,” said Emily Bazalgette, who suddenly came down with unexplained, debilitating fatigue at the age of 28 and was eventually diagnosed with a host of chronic diseases including long Covid. “You might lose your identity, your career, relationships, hobbies, your lifestyle. Your sense of safety, your sense of trust in your body, and also the futures that you had imagined for yourself. That’s a lot.”

All of these losses require a grieving process, says Bazalgette, who now conducts interviews, facilitates group discussion, and writes a newsletter on chronic illness grief, all while managing her ongoing fatigue. But for many people with chronic conditions and their supporters, it’s not obvious that grief is at the center of the experience, and there are few resources for those going through it.

“I wish I had known that word earlier,” said Bazalgette. “For a long time I was very angry. I was jealous of other people who were not ill. I spent a lot of time writing very angrily in my journal. It’s hard to feel our grief, so it can manifest as other things, like rage. But over time, I was able to get to the sadness and the sorrow underneath.”

Deborah Miller, who has spent decades as a therapist at the Cleveland Clinic working with patients and families with multiple sclerosis, noted the same theme. “Whether [patients] put the word to it or not, we identify it as a grieving process. That really resonates with people. They are grieving the loss of themselves and who they were.” It can be a relief to have a name for the experience and to know that it is both common and normal.

Inevitably, this grieving process will be different for every person, making it difficult to know how to navigate the process or support someone who is going through it. Meghan Jobson, internist and co-author of the book Long Illness: A Practical Guide to Surviving, Healing, and Thriving, says it will involve learning about yourself or your loved one in this new phase of life.

“Having a new chronic illness identity is no different than when people have experiences with another new identity,” said Jobson. “Like when people come out, when people become parents, when people go to college — during all these big changes where we’re learning new things about ourselves and we’re evolving.”

Allow time to adjust to the new normal

Adjusting to a new chronic illness rarely happens quickly, which challenges the common desire to find the solution and move on.

While some chronic conditions come with clear medical guidelines, many do not, and people facing ongoing symptoms can easily become overwhelmed with trying to learn all the information available to fix the problem. This is often an impossible task and can cause feelings of paralysis and anxiety. “There’s usually a deep desire to learn everything to do because so much focus is on doing things the right way,” said Beth Kane, a clinical social worker and integrative therapist who focuses on clients with chronic illness.

On top of that, well-intentioned efforts from loved ones to propose possible solutions can add to the overwhelm. Juliet Morgan, a physician, co-author of Long Illness, and a neurologist and psychiatrist who works with people with chronic conditions, recognized this pattern in herself in her early career. “I went to medical school steeped in this thought that I was going to make people better. And that was my job, and that if I didn’t, I was doing something wrong.”

This is a common sentiment among supporters as well as doctors, Morgan said. But it can be more damaging than helpful in the case of chronic conditions, when “getting better,” in the sense of returning to life the way it was before, may not be possible. Messages on social media about bravery, tips and tricks for wellness, and stories about people pushing through and winning can be further damaging because they imply that the sick person should be able to solve their health problems. Posts like “Wake up every morning and fight” or “Your strength and courage defines you” can sound uplifting, but actually add to the emotional burden of illness.

“We put pressure on people that they need to perform perfection, even while they’re totally struggling,” said Morgan.

The healthy alternative, according to Kane, Jobson, and Morgan, is to allow time for the process to unfold, including the loss and grief, a shifting identity, major lifestyle changes, and figuring out what works within the new reality. Accepting the drawn-out nature of this process can be challenging for both those with chronic illnesses and their supporters.

“It’s really, really hard,” Morgan acknowledged. “It’s really hard because it forces you to realize you don’t have control, that none of us really do.”

While allowing time for this adjustment is important, there may be indications that you or a loved one should seek professional help. In particular, it’s important to watch for signs of depression, including losing interest in hobbies, friends, or things that once were pleasurable; changes in sleep or appetite; changes in concentration; or persistent feelings of hopelessness. If someone is considering ending their life, seek professional help immediately.

Depression and other mental health issues can show up in other ways, too; when in doubt, it’s important to talk to a licensed mental health professional.

Cultivating creativity and community can be therapeutic

Even as loss is a defining feature of chronic illness, the changes and new constraints can also prompt discoveries and creative approaches to living. The key for many people with chronic illness is identifying what really matters to them and figuring out new ways to achieve that within the constraints, says therapist Deborah Miller. “I had one patient [with MS] who, the day I met her, she was in four-inch spiky heels, and she swore that she was never ever going to give up her four-inch spikes. I thought that we were headed for trouble,” said Miller.

But as the disease progressed, Miller’s patient adapted. She could no longer walk in heels, so “sometimes she would go to parties ... in her flats and then put her high heels on when she sat down so that she had a sense of being that fashionable person, but in a safe way. It’s about keeping in mind what’s important to you.”

For Kathryn Vercillo, who has struggled for decades with major depressive disorder as well as a host of physical symptoms like fatigue and brain fog, learning to crochet has been foundational to her health and sense of purpose. “I couldn’t get away from the feeling that if I was doing nothing, I was worthless. So I had to find something that I could do lying down and that was portable and cheap. With crochet, I could make a gift for someone or I could make a blanket for myself. Turning a piece of yarn into something is a magical thing.”

Vercillo has since interviewed hundreds of chronically ill women about using crochet and knitting as part of their healing process, and has found that, for many people, these creative acts offer a sense of purpose. “We all need purpose. Making things and gifting things to people gives us that. Even when I am at my lowest, I can find this way to contribute, and that helped pull me out, helped rebuild some self-esteem, helped distract me.”

For people with chronic illnesses, finding new ideas like this often comes from connecting with others who are having similar illness experiences. Vercillo has found this through a vibrant crochet community.

Some people find in-person groups through a health care provider, or they find like-minded people on internet forums for a specific disease. It can be tricky to find a good fit, particularly in online forums where there is often a fire hose of recommendations and it can be unclear who is citing credible, evidence-based information. Ideally, people with chronic illnesses can explore a variety of groups and formats — Facebook forums, Zoom support groups, in-person workshops, and others — to figure out what works best for them.

More than anything, people with chronic conditions say that these communities provide comfort and relieve isolation. “For years, I didn’t know anyone else with a similar illness, so it was a very lonely journey,” said Bazalgette. “Finding my community of people online gave me a sense of solidarity, and it also introduced me to a network of researchers, clinicians, and patient advocates who are pushing research and treatment forward, which gave me hope.”

Expect to receive and give help imperfectly

For many people with chronic illnesses, particularly those who are newly diagnosed, it isn’t obvious what help they need. And within a state of overwhelm, it’s difficult to come up with ideas. Typically, friends and family who want to help also don’t know exactly what to do.

“It seemed like everyone just kept saying, ‘How can I help?’ And I kept saying, ‘I don’t know.’ And then we got no help,” said Claire Venus, Dave’s wife. The best times, she said, were when someone just did something, like bringing over a meal, or offered a specific favor, like picking up their son from school.

Across the board, patients and health care professionals recommend that, when in doubt, supporters default to just listening. “You could say, ‘Do you want to talk and I’ll just listen?’” said Claire. “People are quite quick to try and move you on to a more positive frame of mind or another place, but there’s nowhere to move on to, this is so heavy. I just need to talk it out.”

Morgan echoed this sentiment. “[Supporters] want to give a life raft, but sometimes you’ve just got to hold someone’s hand while they’re going through the bad part.”

This approach can also help avoid common pitfalls, like offering solutions or trying to look on the bright side, which can increase feelings of overwhelm. “I really noticed a tendency of people to brush off the grief and say, ‘It isn’t so bad, Emily, other people have it worse,’” said Bazalgette. “I wish that people around me had been able to just listen to my grief and to witness it.”

Inevitably, in trying to adjust to the new reality, supporters and people with chronic illness will make mistakes communicating. It is helpful to expect these imperfections and frame the experience as a time of learning and growth.

“I think it’s a time as a friend and as an ally to grow as a person, and to learn, and to listen,” said Jobson. And the same thing goes for people who have chronic illnesses. “The biggest gift you can give yourself is to be patient with yourself, to be compassionate toward yourself, and to be open to different paths on the journey that can get you to the healing you want.”

For the Venuses, this journey has included losses and gains. The couple now says no to many activities that used to fill their life — social engagements, work obligations, certain travel — and says yes to other ideas that may have felt too weird or scary before, like buying a used camper van and loading in their family for local summer camping trips.

It is still hard, of course. Things will not go back to how they were before, and the couple has had to remove themselves from their former lives in many ways. But on many days, they feel empowered in their decisions, like they are charting a new course. “There’s almost less fear now,” Claire said. “All the rules are made up, so we get to choose. Even if we’re living a life that nobody else understands, and even if society at large doesn’t make space for it, it’s still our life, isn’t it? It’s not anybody else’s life, it’s ours.”