March 17, 2022

What It’s Like to Grieve Your Own Body After Being Diagnosed With a Chronic Illness–And How to Cope

In a way, Megan Friddle’s diagnosis of lupus and rheumatoid arthritis at age 31 wasn’t earth-shattering. She’d dealt with debilitating symptoms for many years, as well as doctors who underestimated the progression of her illness. So knowing what was behind her joint pain and stiffness was a relief. “I finally had a name for what had been making me miserable for so long,” Friddle, now 41, tells Health.

That relief didn’t last long. Friddle started experiencing side effects from her medication along with worsening symptoms. Then a cascade of life changes plunged her into what she describes as intense grief. Her conditions turned out to need more aggressive treatment, but her insurance required what’s known as “step therapy”–a process in which a patient has to show no improvement while taking less expensive medications before trying a more costly one. Friddle had to try several ineffective meds before she was approved for a biologic, the pricey gold standard to treat this inflammatory arthritis condition.

“This was really when I began grieving in earnest,” Friddle recalls. “Two of the medications I tried had horrific side effects, which included constant brain fog and losing about half my hair, and those were the darkest moments for me.” She was in a PhD program at the time and working on her dissertation, yet her health issues overwhelmed her thoughts. “It felt like the disease and the treatments had taken away everything about myself that was familiar,” she says. “It felt like a piece of me had died–my future self.”

The term chronic illness encompasses a range of ongoing, generally incurable diseases or conditions. Arthritis, asthma, inflammatory bowel diseases, multiple sclerosis, and even some cancers fall under the chronic illness umbrella, according to the National Library of Medicine (NLM). And they’re not uncommon. More than 40% of Americans were living with a chronic illness in 2012, per the most recent Centers for Disease Control and Prevention (CDC) data, and 40 million people say their condition forces to them to limit their usual activities.

It’s been well established that those with chronic illness are at a higher risk of mental health conditions, particularly depression. The Cleveland Clinic reports that an estimated one-third of chronic illness patients–or anyone facing a serious, life-changing disease–will experience feelings of depression. Yet the percentage of chronic illness patients with this mood disorder depends on the specific illness. According to a 2019 review published in The Lancet: Psychiatry, the prevalence of depression among people with RA is 16%, likely due to the pain and fatigue it causes. Research published in the journal Pain Research and Treatment estimates that 40% of people living with fibromyalgia also suffer from depression.

The link between chronic illness and grief is cloudier. Still, many patients vouch that the sense of loss they feel for their former selves or the life they used to know is a form of grief–it’s a pervasive, recurring sadness experts have coined “chronic sorrow.”

Though the term isn’t mainstream yet, it isn’t new. In the early 1990s, chronic sorrow began showing up in medical literature, defined as “the long-term periodic sadness the chronically ill and their caregivers experience in reaction to continual losses.” Chronic sorrow was also described as the “cyclic sadness over time in a situation with no predictable end; external and internal stimuli triggering the feelings of loss, disappointment, and fear; and, progression and intensification of the sadness or sorrow years after the initial disappointment or loss.”

Chronic sorrow has made its way into more recent literature, too: A small study from 2007 in the Journal of Clinical Nursing looked at the rates of chronic sorrow in patients with multiple sclerosis. Of the 61 patients with MS in the study, 62% of them met the criteria for having chronic sorrow.

The idea of grieving your own body can be a difficult one to grasp, especially if you haven’t personally dealt with a life-altering diagnosis. One of the best ways to understand these feelings of loss is to recall what it feels like to have a short-lived illness, Karen Conlon, LCSW, the founder and clinical director of Cohesive Therapy NYC, tells Health.

“When people experience acute illnesses, like a cold, or even something more serious but not long-term, there’s a short grieving process: They’re grieving that they have to stop an activity or eating things they normally like, but they know it’s temporary,” Conlon says. “For people with chronic illnesses, it’s very different, much more like the grieving process people go through when they’ve lost a loved one. Grieving comes in the form of grieving the life or career you thought you’d have, the path you thought you’d take, and needing to adjust to a new normal that is forced on you.”

In the MS patients with chronic sorrow, the Journal of Clinical Nursing study identified seven distinct losses brought about by chronic illness: “loss of hope, loss of control over the body, loss of integrity and dignity, loss of a healthy identity, loss of faith that life is just, loss of social relations, and loss of freedom.” Here, three women–along with chronic illness and mental health experts–reveal how chronic illness can contribute to grief, and what to do if you find yourself dealing with chronic sorrow.

Processing the loss of a life they previously took for granted is a major part of mourning for those with chronic illnesses, Conlon says. Career aspirations often have to change, which can be devastating for those who’ve worked hard to achieve their professional goals. Friddle, who lives in Atlanta, finished her PhD–but she decided not to look for an academic job because having RA would make it tough to manage the frequent relocating that early-career faculty do before finding a tenured position.

Raven, a 43-year-old trans woman who lives in the Seattle area, is unemployed and on disability because of severe Crohn’s disease. “I have to go to the bathroom with such frequency that it’s impossible for me to hold a normal job,” she tells Health. “This was a huge problem while I was still working. Managers couldn’t stand it and even threatened to fire me with the intention of trying to get me to just quit on my own. I had supervisors tell me that Crohn’s wasn’t real and was just something I was making up. This back and forth went on for years and contributed to the extreme stress that made me sicker–nothing quite affects [my illness] the way stress does.”

For Elizabeth Lewin, 34, a TV journalist in Buffalo, New York who has RA, her condition meant adjusting her expectations of herself. “I like to call myself a perfectionist in recovery,” Lewin tells Health. “I’m in a business where in many ways my job is to look okay all the time, and that’s not my reality as a person. I came from a really high-achieving family. My father is from Jamaica and my mother is from Cuba, and they fought tooth and nail to create the opportunities my sister and I are so fortunate to have. All you want to do is pay that forward, [but] these health blocks [started] to erode my self-love.”

Lewin didn’t intend to have a television career; she went to school for theater, but she began feeling sick in college and wasn’t able to perform in plays or participate in the backstage work required for her program. “That was my first real experience with grief,” she recalls. “I’d been doing something for my whole life and was really good at it, and that was the first time I experienced my body not letting me do something I really wanted to do.”

Part of the grief comes from the fact that the expectations we have for ourselves in our younger years can give our lives meaning, Tracey A. Revenson, PhD, a professor of psychology at Hunter College and The Graduate Center at City University of New York, tells Health. Revenson’s research has focused on the psychological adjustment to chronic illness, and participants in her studies “talk about a changed self, a changed life, or loss of identity they need to adapt to,”she explains. “Especially for those in young adulthood, a diagnosis of chronic illness brings about a new search for meaning, what the illness will mean for their future.”

People with chronic illnesses don’t just grieve their former, healthier self–they might also mourn the loss of joyful activities and experiences that aren’t compatible with their condition. “There’s a lot of food I can’t eat–chocolate, coffee, spicy foods, rich foods, anything high in fiber–and it’s very depressing knowing that I can’t eat so many things I used to love and that I’m best off sticking to bland foods for the rest of my life,” Raven says.

People with chronic disease may first process this loss by denying it (yes, the stages of grief can apply to chronic illness, too), as Lewin says she did. “There was a period where I was in such serious denial–I wanted to eat all the inflaming foods, drink all the pop, hang out with my friends, and not sleep, the worst things for me to do, but that was part of my process,” Lewin says.

Though Friddle’s RA is in remission and she feels lucky to be able to do things that seemed walled off in the early days of her diagnosis, such as working full time and dancing, she says it’s only possible because of relentless planning and preparation and caution. “I have to watch what I eat, I have to get plenty of sleep, I can’t spend time in the sun, I have an expensive, refrigerated, injectable medication that I have to take every day,” she explains. “Travel is challenging. I don’t think about it all the time, but I do grieve the spontaneity I experienced in my teens and 20s.”

Living with a chronic illness can also strain relationships and even force them to an end. This kind of grief hit Raven hard. “I became so sick and depressed, I was suicidal–I had lost almost all of my friends, I was about to lose my job, and I was nearly broke and struggling to get by with very little support from anyone, including my family,” she says. “Healthy people tend not to understand people with chronic illnesses, whether it’s that they don’t understand the illness, that they just can’t understand how overwhelming it is, how it can take over your whole life.”

It’s a tricky balance, Conlon says, because people with chronic illness don’t want to be pitied or seen as a burden. But they also need support from loved ones who can hold space for the challenges they’re facing. “A support system is a really important part of resilience and healing, but on the other hand there is a lot of guilt and shame and not wanting to burden that support system,” Conlon explains. That leaves many people feeling distant or disconnected from their loved ones–lonely and grieving.

One part of this challenge is that chronic illnesses, and the grief and mental anguish that accompany them, are often “invisible.” People don’t always fit the expectation of what a sick or grieving person looks like, and they may have good days interspersed with very difficult days. So it’s hard for others to grasp just how challenging day-to-day life can be. “To hear things like, ‘Well, you don’t look that sick’ or ‘At least it isn’t cancer’ was really painful, because it told me that people weren’t actually interested in my experience,” Friddle says. “Those who did listen, and who didn’t take my sudden absence from social life as a personal rejection, were so essential to my well-being.”

If you’re grappling with loss because of a chronic condition, simply acknowledging your mourning is a healthy first step. Most people don’t recognize their emotional experience as grief, Conlon says. “Typically I or my clinicians are the ones who help them identify and make the comparison,” she explains. “It’s this eureka moment: This is so true! It would be so helpful if more people understood their experiences as grief.” It often clicks when people recognize some of the more traditional grief stages and experiences, such as shock, anger, guilt, or denial, in the way they’ve been processing their illness, she adds.

Know, too, that there’s no one way to handle this emotional journey. “The process of psychological adaptation to a chronic illness is neither linear nor universal,” Revenson says. Just as with any kind of grief (and your illness itself), you may have easier days and harder days. Building up your resilience can help you learn to bounce back faster after a setback, Conlon says. Finding a qualified therapist with experience working with chronic illness patients can assist you with this. If your budget is an issue, Conlon recommends Open Path Collective for lower-cost therapy.

Support groups for those in grief from a chronic illness are also beneficial. “Support groups can help people feel emotionally safe, validated, and heard without even having to speak, when other group members have a shared experience,” Conlon says. But finding a group that fits you can be a challenge. It’s okay to shop around if the first one you try doesn’t feel right. If you’ve landed in a support group that isn’t helping, ask your health care provider for recommendations, and spend some time looking for condition-specific groups on Facebook, Conlon suggests.

Finding opportunities to help others may be healing, too. “If you have the energy for it, advocacy can be a wonderful way to channel feelings of frustration and powerlessness into action that will benefit others,” Friddle says.

Beyond that, giving yourself grace and space is key. Recognize and celebrate even the small wins, and the way you’ve grown and learned to process the grief brought on by an illness that might largely be out of your control. Friddle, for one, is proud of the person she’s become: “I’m stronger, I’m more empathetic, I have a much greater sense of purpose, and I don’t take anything for granted.”

How to Be OK When You’re Not OK Check out Health‘s special series on life after loss.

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