Understanding Chronic Illness Through the Lens of Friendship
The two most important elements in a friendship are compassion and understanding. These elements are not any less important when your friend has a chronic illness. If anything, your compassion and understanding should be amplified.
I met my best friend when I was eleven years old. She was a new sixth grader at my school, and we bonded over a shared love of Taylor Swift. The girl I met when we still had braces and wore Brandy Melville has matured into the smart, driven, joyful young woman I know today.
At eleven years old, I had no idea that she would later have to confront the physically and mentally exhausting toll that is chronic illness. When you become friends with someone, there is no way of knowing what hardships they will go through, but that untold future is so beyond the point of the relationship. Your friendship should be one of love and support, which may manifest itself in different ways, especially when things don’t always go according to plan.
As we grew up together, I noticed that some friends and classmates had little understanding of what it means to manage a chronic illness. Close friends of ours would express impatience, demonstrating their ignorance when they expected her to be available in the same way that they could be. People expected her to “get better already” and were annoyed that she had so many doctor appointments. Instead of extending empathy when she cancelled plans, they would complain that she could never hang out, as if her having an autoimmune disease was an inconvenience to their own lives.
In 2017, my friend was diagnosed with adrenal failure and adrenal deficiency, and undifferentiated connective tissue disease (UCTD) the following year. Adrenal failure and deficiency is a condition that, as a result of a lack of hormones, leads to chronic fatigue amongst other symptoms. UCTD is an autoimmune disease in which the body attacks its own tissue, leading to fatigue and higher risk of general illness. My friend struggles with maintaining her energy, which makes recovering from illnesses or surgery even harder. Getting an actual diagnosis is an unfortunately common experience for those with chronic illnesses. For years, my friend went from doctor to doctor, getting test after test, only to receive misdiagnoses. She was told, mostly by the male doctors she saw, that maybe her illness was just a manifestation of depression or anxiety. Her diagnosis came as a relief because it meant she could finally work on a treatment plan. However, as many people wrongly assume, having a diagnosis and treatment plan is not a panacea for adrenal failure and UCTD. She still deals with severe allergies and asthma, and is still at a higher risk of falling ill. Just two weeks ago, she had sinus surgery and has been slowly recovering, gaining more energy, a better appetite, and the ability to get back to a normal routine. Even though I wanted to visit her as much as possible, I knew that everything had to be on her terms—showing up to her house with soup or flowers was not the best way to show my support. I waited until she was ready to have me over, when she wasn’t fatigued, nauseous, or having a migraine.
While I don’t claim to be a perfect friend, as there is no such thing, I have found that there are key components that help keep my friendship strong.
Everyone, no matter their health status, can only give so much of their time and energy in a relationship. It is important to create expectations with your friend on an individual basis, rather than expecting the same of every friend and loved one. For example, while I can rely on some of my friends to agree to spontaneous or last minute plans, I know that I should ask my friend a couple days before I want to hang out if she is available. Spontaneity is not something I can expect of my friend because of the unpredictable nature of her health status.
I have learned to expect that she will have good days and bad days, which, unfortunately, is out of her control. I say this not in order to recommend that you expect the same of your own loved one; rather, I encourage you to reflect on your own relationship and the expectations you might have and consider whether you are expecting too much or too little. An even better step would be to sit down with your friend and ask them directly what their limits are and what both of you feel you can ask of the other. We all have our limits and know the exhaustion of being pushed too far, so extend that empathy to your loved one.
Another important aspect of plan-making is the ability to stay flexible. Instead of asking my friend to commit to an event in advance, I know to expect the possibility of postponement or cancellation. I have learned not to take things personally when she cancels a plan because I know that she has to take care of herself. Of course, it sucks when plans don’t work out the way you want them to, but you have to remember that it is not about you. And even if your loved one is having a good day, they are more than allowed to take that day for themselves. Just as you don’t owe anyone your time or energy, neither do they.
Listening With an Empathetic Ear
Practicing empathy is one of the biggest keys in any relationship, but especially with a friend who is chronically ill. There will be times when they are exhausted, frustrated, upset, or angry with being sick, doctors, or friends and family who don’t understand how to show up for someone with a chronic illness.
There have been countless times where a well-intentioned friend or even a stranger give unsolicited advice on how to “get better” to my friend. People don’t believe her or minimize her experiences, dangerously suggesting that if only she had a positive mindset, then she would be cured. Imagine the already strenuous battle of managing a chronic illness, only to be told that it is not that bad or only in your head. If your loved one shares their frustration with you, the most important thing you can do is listen. Try not to compare your past experiences with an illness or liken your shitty day to their experience. Bringing up your own frustrations in response to what they just shared makes the conversation about you, and might make the other person feel they need to comfort you instead of the other way around. Offering solutions might not be helpful, unless they specifically ask for your advice. Often times, your friend just wants someone they can vent to, to feel heard, and most importantly, understood, especially if they’re going through this illness alone.
Lastly, having your friend’s back, even when they aren’t physically with you is a crucial way to show your love and loyalty. There will be times when people say ignorant and hurtful things about your loved one. I am not advocating that you pick a fight, but you have the power to create a teaching moment out of those hurtful comments. The emotional labor of having to explain your illness can feel unrewarding and ultimately exhausting.
You can show your support by taking on some of that labor and explain, for example, why giving unsolicited treatment plans to someone with a chronic illness feels frustrating. You don’t have to be an expert on your friend’s condition to be able to stand up for them. Instead, advocating on behalf of your loved one is about asking others to empathize a little more before projecting their assumptions on another person.
Ultimately, you and your loved one will establish your own boundaries, expectations, and ways of supporting each other. What is most important is that you see your friend, not as their chronic illness, but as a whole person, whom you love. One of the biggest reasons my friend was hesitant to tell her new friends in college about having a chronic illness is because she didn’t want to be known as “the sick girl.” No one wants to be known for a single thing, especially when it is out of their control. When you start to see your friend and their chronic illness as two separate things, that is when your empathy for them will tell you exactly how to be a good friend.
About the Author
Lola Proctor (she/her) is a junior from Los Angeles, CA studying the Politics of Fashion & Journalism at New York University. She is currently an editor at NYU Gallatin’s magazine Embodied. She is passionate about writing, womxn in indie rock, fashion, and feminism.