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Chronic Illness And Friendship

"I get by with a little help from my friends." —The Beatles

Earlier this month, U.S. Surgeon General Dr. Vivek Murthy issued an advisory regarding our nation's "epidemic" of loneliness and isolation. Noting that loneliness "has been an underappreciated public health crisis that has harmed individual and societal health," Dr. Murthy stated that "our relationships are a source of healing and well-being hiding in plain sight—one that can help us live healthier, more fulfilled, and more productive lives."

Source: Katie Willard Virant

Friendship—defined as "an active and freely chosen platonic relationship between two equals" (Moensted et al., 2023)—plays an important role in reducing loneliness and improving overall physical and mental well-being. In our friendships, we feel a sense of belonging. We laugh with friends; we support and are supported by our friends. We feel less alone and more connected to the human race due to our friendships.

Chronic illness affects the ability to make and maintain friendships (Moensted et al., 2023). Without a doubt, friendship's benefits are important to people who live with chronic illnesses. Isolation and loneliness are often sequelae of living with illness, and friendship is particularly necessary to bridge that gap in connection. However, the conditions of living with illness can present challenges to friendship.

Bodily limitations can interfere with social connection.

Illness symptoms, including pain and fatigue, are often managed in private. Thus, typical ways of enjoying friendship—doing planned activities outside of the home together—can be challenging for people living with chronic illnesses. Further, symptoms often are unpredictable, necessitating the cancellation of plans. Many chronically ill people become hesitant to commit to plans with friends, knowing that they may well have to cancel. Their fear of being viewed as "flaky" and disappointing leads them to withdraw, which can cause friends to stop inviting them to activities.

Even when people living with illness are able to keep plans with friends, there's often a high labor cost. A woman living with multiple sclerosis puts it well:

"I don't think that people realize that actually getting myself ready and getting to the event, I've already used up half of what I've got for the night. I don't think people see that as an effort. Able-bodied people don't see . . . How much it actually takes out of me to shower and get ready and dressed and physically get to an event. They don't appreciate the fact that I've actually already been hard at it for a couple of hours before I've even stepped foot across the threshold" (Moensted et al., 2023).

Informing friends about the high cost of social participation can be beneficial. When we tell a friend, "It's not that I don't want to see you; it's that getting out is really difficult," we make space for a dialogue about how the friendship might shift to accommodate chronic illness. Video calls, quiet evenings at home, and text messaging are ways to stay connected that may be less taxing for people with chronic illnesses. Able-bodied friends may be agreeable to these alternative ways of being together.

The vulnerability inherent in chronic illness can create barriers to friendship.

One of the pleasures of friendship is the joy of being valued by another. We wish to be seen as competent, likable, and pleasant to be around. When our friends see these qualities in us, we can see them in ourselves.

However, much of living with illness involves acknowledging the less pleasurable parts of ourselves. "All I do is complain," says a man living with a spinal injury. "I don't know how anyone can bear to be around me."

"I'm not that much fun," says a woman living with an autoimmune disorder. "I'm always either exhausted or in pain."

People living with chronic illness struggle with whether their reality—much of it the antithesis of positivity—can and should be shared in friendships. They feel a "sadness of being unable to share hidden pain and suffering of living with chronic illness with friends, and the loneliness this evokes" (Moensted et al., 2023). They believe that the price of connection is the muting of their chronic illness experiences. This leaves them lonely within the connection and lacking much-needed support.

Moving towards authenticity

We live in a society where positivity, action, and independence are valued above vulnerability, stillness, and interdependence. We also live in a society where loneliness is killing us. Is it possible that we who live with chronic illness can be leaders in reframing what it means to be connected?

Chronic Illness Essential Reads

Research shows that many people who live with chronic illness fear that the reality of their illness will not be acceptable in friendships (Moensted et al., 2023). They believe that the pain and suffering they experience—their vulnerability—must be hidden away or at least substantially minimized in order to have friends. But why must this be so?

We who live with chronic illness don't have a monopoly on vulnerability. Almost certainly, the able-bodied people we call friends have their own sorrows that they may hesitate to share with us. What if our bravery in moving toward authenticity isn't a deterrent to closeness? What if it's instead a relief to those around us, freeing our friends up to be more vulnerable with us?

For many people living with chronic illness, this movement toward authenticity is a powerful factor that organizes their relationships. They report having fewer friends but deeper friendships. As one study participant reported, "Putting up a front to please other people . . . I'm not doing that . . . And I feel a lot better for it. I found out who my real friends were. And I did lose some people, but I gained others, and I'm perfectly at peace with that" (Moensted et al., 2023).

Questions to think about

Have you lost friends due to your illness? What was it about your illness that challenged these former friendships?

Have some friendships deepened due to your illness? What caused that increased intimacy?

What qualities do you look for in a friend? What qualities do you bring to friendship?

If your illness has limited your usual ways of being together with friends, have you found other ways of enjoying friendship?

If authenticity feels challenging, are there small ways that you can reveal more about your illness experience?

References

Moensted, M.L., Lewis, S., Willis, K., Dubbin, L., Rogers, A., & Smith, L. (2023). Friendships, connectedness, and (in)authenticity for those with chronic illness: Trading in one social gain for another. SSM - Qualitative Research in Health 3 (2023) 100246.

More references

The Surprising Truth About Chronic Illness And The Future Of Work

At 23, Hannah Olson leads a company that champions the chronically ill in the workplace.

Photo by Isaac Morrier

When Hannah Olson graduated from Boston University last year, she was ready to take on the world. Never mind that she was battling chronic Lyme disease, with an IV antibiotic pump hooked up to her arm through a catheter and 28 pills to swallow every day. Her go-getter spirit was as alive as anyone's, and she soon landed a job at a top Washington, DC, design firm.

It was a dream role for Olson and she dove into the workforce with all her might—only to find out how difficult it was to manage a chronic illness with a full-time job. "[My IV and pills] were not compatible with having to go in and out of meetings all day and keep up with the demands of a 9-to-5," she says. Tragically, she quit. The future looked bleak and her outlook dimmed.

"This was a really hard time for me because I thought, 'Is there a place in the workforce for people like me?' I really thought there wasn't a place for chronically ill people," says Olson. "I also knew that just because I had these physical limitations, that didn't mean that mentally my ambitions weren't intact. It was hard to find the words to explain that to an employer, so I became determined to change that. I knew that I wanted to make a change in this space."

At home, she spent weeks scrolling through social media and support-group forums. "I was taking screenshots of hundreds of people writing about this problem on Facebook alone, saying, 'I have a chronic illness and I'm having trouble finding work.'"

In a lightbulb moment, the idea for a new company was born—Chronically Capable, a recruiting startup that connects the chronically ill or disabled with meaningful work and flexible employers. Now up and running, the online platform finds job opportunities for people who sign up on the site. "No one should have to decide between their life's passion and their health," insists the 23-year-old entrepreneur.

Right now, the disability unemployment rate hovers at 9 percent—versus 3 percent for non-disabled Americans. To Olson, that's unacceptable. "Our goal," she declares, "is to eliminate the employment gap between chronically ill or disabled Americans and non-disabled Americans."

Converging Trends: Chronic Illness And Remote Work

Olson's venture couldn't be timelier, as we're at a tipping point for chronic illness in our culture. According to the National Health Council (NHC), about 133 million Americans are living with a chronic illness now; by next year, half the population will live with at least one chronic illness. Why? Chronic illness is raging for several reasons—including a rise in sedentary lifestyles, which raises the risk of diabetes, obesity and heart disease, and a rising life expectancy that means we're living longer with chronic illnesses.

The NHC defines chronic disease as an illness that lasts longer than three months. There are hundreds of chronic illnesses, from rheumatoid arthritis, fibromyalgia, and endometriosis to irritable bowel syndrome, depression, and chronic migraines. Each one can vary in severity and bring its own set of challenges. "A chronic illness isn't this blanket term that means you're sick in a hospital bed," explains Olson. "Often, it's an invisible illness. You can't tell just by looking at a person, so there's a lot of misunderstanding around it."

If chronically ill people—soon to be half the population—can't find jobs, then we're looking at a problem of increasing scale and urgency. Many chronically ill people do not qualify for disability, and even if they do, disability paychecks don't always cover all their expenses. The chronically ill and disabled need work not only to support themselves and their families (and pay their medical bills), but also for the sense of purpose and fulfillment that meaningful work can bring.

Yet, as Olson can attest, not every job is appropriate for someone with a chronic illness or disability. That's why Chronically Capable focuses on flexible and remote opportunities, including full-time, part-time and project work. The good news is that, with the rise in global connectedness, remote work is having its moment in the sun. According to FlexJobs, remote work grew 115 percent between 2005 and 2015—that's 10 times faster than the rest of the workforce. About 3.9 million U.S. Employees (or 2.9 percent of the U.S. Workforce) work from home at least half the time. That's up 1.8 million from 2005.

Perhaps the biggest challenge for Chronically Capable is answering a key question from employers: Why should they hire a chronically ill or disabled worker in the first place? To convince them, Olson uses herself—a young, ambitious founder and CEO—as an example of the kind of worker they would be lucky to hire. "I say, 'Well, look at me. I'm a perfect example of someone who has a chronic illness but has tons of goals for my career and future. And I'm definitely capable,'" she says. "When people see me, they have no idea that I've spent the last four or five years of my life very sick. And just because you're sick, it doesn't mean you're less capable of contributing to the workforce."

Adaptability Makes Amazing Workers

The chronically ill and disabled have a trait that might even give them an edge over other workers—they know how to adapt. "When I had an IV in my arm, I had to adapt to the fact that I couldn't shower normally," says Olson. "You have to make alterations—like Saran wrap your arm and stick it out of the shower. You have to be creative. I think the chronically ill are even more capable than the non-chronically ill in certain ways, because you spend your whole life adapting and changing things. That translates to shifting your skills and adapting career-wise as well."

For inspiration, consider Fahim's story. A young man from Bangladesh who was born with muscular dystrophy, he taught himself graphic design and went on to make over $2K a month working on the freelance platform Fiverr. He had taken his mother's savings from making quilts to buy a laptop and learn tech skills. That risk paid off—and Fahim went on to make enough money to purchase land for his family to build a home. He says that his physical disability made him mentally stronger—and perhaps more determined, too.

Fahim's story is unique, but many people out there are just as resolute and passionate as he is about pursuing their dreams and goals despite health challenges. Olson sees this firsthand, and Chronically Capable has received an outpouring of support since the platform launched in April. "I get dozens of emails and messages every day from people letting me know how appreciative they are of this product and what we're trying to do," she says. "We're getting hundreds of sign-ups a week, and our main objective is to get a job for every person who applies on our site."

As an outspoken CEO and advocate for the chronically ill and disabled, Olson knows that she has taken a risk by telling the world her story. Many chronically ill people choose not to disclose their illness for fear of jeopardizing their career. She wonders if one day her openness will come back to haunt her—then quickly shrugs it off. "That's a risk I'm willing to take because I'm not doing this for me. If I can help someone else by being public about my struggles, that's all that really matters at the end of the day."

Self-care Is Not A Luxury For People With Chronic Illness

I like to believe that my husband, Jared, and I have a fulfilling marriage and family life, even with chronic illness. Each day, we make intentional choices that align with what we value most: living a full and happy life.

Jared has two chronic illnesses, hemophilia B and a seizure disorder. We also happen to live in the Philippines, which is a developing country. These two factors can make it challenging to live a truly fulfilling life.

Oftentimes, we feel as though we're stuck in a never-ending loop of physical, emotional, and financial challenges.

The infinite loop of financial and mental troubles

Chronic illness affects more than just physical health. It can also take a toll on one's mental health and finances.

With hemophilia, factor products could cost a fortune out of pocket or take a significant chunk out of a person's health insurance. Seeing money seemingly evaporate into thin air can be stressful. This stress is even more pronounced in a struggling economy like that of my country, where salaries are barely enough to cover our monthly bills and expenses.

In addition, managing a chronic illness can be a full-time job in and of itself. My husband describes the mental load of hemophilia management to be quite intense. He often second-guesses small things, like how he should walk, where he should step, and how he can modify his daily activities to avoid bleeds. He constantly fears experiencing yet another severely debilitating bleed, but he must also acknowledge that fear isn't helpful for him. It's a continuous process that goes on in the background of his mind.

These added mental demands of chronic illness can make it difficult to maintain steady employment or advance in one's career.

Many people with chronic illnesses find that they must prioritize their mental health and well-being. Therefore, engaging in activities that bring them joy and relaxation becomes nonnegotiable. A few examples of such activities are traveling, exercising, playing sports, or engaging in a beloved hobby.

However, many of these activities come at a cost, which can add to the financial burden of managing a chronic illness. And so the cycle continues: Money problems result in mental stresses, which cycle back to money problems.

A tricky balancing act

With chronic illness, managing one's mental state alongside one's finances can be a tricky balancing act. So it's sad to hear judgments from other people who think we can't possibly be struggling, just because they see us trying to have fun or accumulating good memories.

Social media tends to amplify this impression as well, since many people romanticize their lives online. I wasn't aware I practiced this until I realized that I enjoyed building an online photo album of memorable experiences to look back on whenever tough times strike.

When others assume that our struggles with chronic illness aren't valid simply because we seem to be enjoying our lives now and then, I cannot help but feel invalidated.

Self-care through destressing is the next best option for mental healthcare

Living our best lives with chronic illness can be ridiculously expensive. Therefore, we cannot understate the importance of sticking to budgets, prioritizing expenses, and trying to access free resources needed to maintain health and well-being.

However, it's not always realistic to obtain such resources at little to no cost. Mental health services such as psychotherapy, for instance, are expensive in my country. To get a free consultation, one must wait for weeks, or even months, until a free slot opens up. This is not ideal, especially if someone is going through a mental health crisis.

Oftentimes, self-treatment is the next best resort for Jared and me when it comes to managing our overall well-being. And so we try to do things we find fulfilling, romanticize our lives on social media, and do enjoyable activities with the people we love, regardless of what it costs us.

It's possible for people with chronic illnesses to find joy and happiness in life. By supporting their financial needs and advocating for a more equitable healthcare system, we can help ensure that everyone has the resources they need to live their best lives.

But until this becomes a systemic reality, let's not judge people with chronic illness for doing whatever they feel is best for their overall wellness.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

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