How I Learned To Talk About Invisible Illness

In the middle of August, as I packed up my suitcases for a semester abroad, I received an email from one of my future flatmates. “I know it may seem very strange to write a big long email about it, but I have an unusual condition. I thought I should try and explain a little so here goes…” Emma’s email began.

I knew that Emma had been living with chronic illness that manifested itself in fatigue-related symptoms, but beyond that I was clueless. I had never heard of her illness, although the fact that she was taking a semester off from university told me that it was severe. Grateful for some guidance, I read and reread her email, which included a concise summary of her symptoms and treatment for her illness. I learned that the illness she had been diagnosed with was called Chronic Fatigue Syndrome (CFS), though Emma preferred to call it by its older name, Myalgic Encephalopathy (ME). But the most important sentence came at the very end: “If any of you have any questions about it then please ask me.”

Despite being clumsy and unathletic, I have been raised to invest in my health. From my on-again, off-again commitment to running to my fondness for vitamin-packed superfoods, I’ve actively tried to develop good habits while I’m still young in hopes of strengthening my bones against osteoporosis and shoring up my immune system against the barrage of germs that college constantly sprays my way. If everyone has some neurotic tic, mine is hypochondria. When I was a child, all it took was the mention of a stomach virus before my stomach was in knots, anticipating a disaster that almost never materialized.

But for all of this preventative hand-wringing and meal-planning, I knew that I had never encountered illness in the way I was about to. Like most of us, I knew people who were sick. I watched my grandfather’s health slowly deteriorate as Alzheimer’s hijacked his mind, and I live in one of the most Lyme-infested areas of the country. But all of these illnesses seemed to take place in private; as difficult as it was to watch my grandfather suffer, I did not live with him day in and day out. Although my thoughts remained with him and other friends whose lives were impacted by illness, I fell asleep every night insulated in my own illness-free home. For that, I am grateful. But I worried that I lacked the communication tactics to talk with Emma without bringing up her illness too much or too little. When I arrived in Edinburgh, I visited Emma’s family’s home for dinner. Emma had been resting, and we all waited in the front room for her to come downstairs. Hyper-aware of my own health, I felt the feverish shiver of a travel-induced head cold storming at the edge of my awareness and wondered what to expect.

The girl who bounded into the room and swept each of us up in a big hug was nothing like the sad, sickly waif I had imagined. Even as she wrapped herself in a thick blanket, pulled on gloves, and hugged a hot water bottle on the mild August evening (I later learned that her illness made it hard for her body to regulate temperature), her smile remained big, and she laughed and teased us as we discussed the logistics of the next day’s move. She explained that her illness ebbed and flowed, sometimes preventing her from completing daily tasks and other times mercifully leaving her alone. CFS is invisible and elusive, difficult to diagnose and even more difficult to treat. Regardless of when it reared its ugly head to us, we all had to know that for Emma, it was there all day, every day. It may not have defined her, but it did determine what she could and couldn’t do on a daily basis.

In the months that followed, I came to know Emma as a conversation partner, fellow Simon Pegg fan, and an adventurous soul. Although I never knew pre-ME Emma, I learned that she had lived in Sri Lanka and travelled in China, gone on weeklong wilderness survival trips in the Scottish Highlands and always marched to the beat of her own drum. These long talks would come during Emma’s good days. On her bad days, we would exchange a few words in the kitchen before she would fumble a word, shut her eyes tight while she laboriously assembled the sentence she needed, and then point to the door apologetically. “I need to go lie down,” she would say, her voice strained and her face white.

According to the Chronic Fatigue Research and Treatment Unit at King’s College in London, “A recent report by the Royal College of physicians officially proclaimed [CFS] ‘real’ in the sense that they recognize a cluster of symptoms which is distinguishable from any other disease. They stated that this symptom cluster appeared to have no one cause, with both physical and psychological problems playing a part in the condition.” Because a CFS diagnosis recognizes of a collection of symptoms, CFS’s effects are as varied as the individuals who live with it. For example, some manage to recover in a year or two, while others spend decades confined to a wheelchair. There is no “one size fits all” understanding to be had.

Emma met her own diagnosis with disbelief. She was forced to face her denial head-on when she was told by a clinic that she would be denied treatment until she accepted the reality of her situation. Even after she had accepted the illness as part of her life, family members and friends continued to voice doubts. “When I told people I couldn’t concentrate, they told me they felt the same,” Emma wrote in a document that she shared with me for this article. “I say that I have difficulty getting out of bed in the morning. They laughed—everyone feels like that! I tell them that I’m tired, I’m so f*cking tired. Often I feel so dizzy I have to sit down. It feels like I’m wading through treacle, there’s a fog in my brain. I can’t always understand what people are saying. My eyes go blurry and I can’t focus on what’s happening. My face goes pale, and I’m Scottish so it’s scary pale.”

One day, I noticed a piece of paper blue-tacked to the wall in Emma’s room. Titled “Shit people say,” it displayed a list of odd accusations and refusals to accept the reality of the illness that now ruled her life. From the doctor who told her to “get yourself some vitamins and get over it” to friends who mistakenly believed that she had had a nervous breakdown, the misinformation was astounding. “The thing [CFS] that they don’t think exists rules my life,” Emma later told me. But she also recognized that she had left university with hardly a word to anyone; many of her friends simply did not know why they hadn’t seen her in a while. For better or worse, life goes on regardless of whether or not we’re able to fully participate in it.

Despite Emma’s initial reticence to open up about her illness, you know from the beginning of this article that she did open up to the residents of our flat about the details that were relevant to communal living. She explained that a chore like vacuuming would use energy that she would otherwise be able to spend on a walk or having lunch with a friend. We learned that we needed to tell Emma in advance if we were planning to have a party. Rather than unintentionally isolating her by hosting parties elsewhere, we could easily include her by giving her enough notice to save up energy for a big event. The smalltalk or couple of drinks that I take for granted as a healthy person would require days of resting for Emma. In addition to the logistical aspects of living in a home where chronic illness is present, I grew to appreciate Emma’s vast knowledge of health and wellness. When you’re constantly meeting with doctors to analyze the details of your health, you gain an almost encyclopaedic knowledge of things like the nervous system, stretches, breathing exercises, nutrition, and more. By opening the door for communication and gladly acting as a resource for information about health, Emma made me feel comfortable enough to ask some respectful questions.

As a hypochondriac and a private person who tends to wait for others to open up, I initially struggled to know how to approach the topic. The best lesson I learned from Emma was also the simplest: If you want to understand, just ask. “What do you talk about if you’ve spent a month in bed? What could you possibly have to say if you’ve not been able to do anything with that time?” Emma asked me once. Although her question was rhetorical, it helped me to step inside her shoes. What any of us does on an average day shapes our outlook, our reflections, and our reactions. Whether someone is experiencing a semester at university, a gap year of travel, a job, or an illness, those experiences shape the private world of thoughts we each live in—and if you’re friends with someone, what else would you want to talk about anyway?

If you’re uncomfortable asking questions or are nervous about prying, take your friend’s lead. There may be days when she just doesn’t feel like opening up or wants to enjoy your company without focusing on her illness, but there also may be days when she is secretly hoping you’ll present the opportunity to talk about what she’s been dealing with. Start with a neutral question and be careful not to make assumptions. There’s a huge difference between asking “How have you been feeling this week?” and “How’s your tiredness thing going?” Although both questions might be asked with similar good intentions, the first opens the chance for your friend to educate you and the second seems to imply that you aren’t taking her illness seriously. If you really know nothing about her illness, be honest. More importantly, ask where you can look to learn more. Chances are that your friend has a whole folder of bookmarked resources that she’d be happy to share with you.

At the end of the semester, Emma taught me spoon theory, a brilliant metaphor developed by Christine Miserandino, a blogger at “But You Don’t Look Sick”. To play with spoon theory, you are given a handful of spoons (or knives or forks or chopsticks or whatever you have lying around). Each spoon represents a unit of energy, and to complete daily tasks like getting dressed, making breakfast, and walking to lecture, you have to give up spoons. When I explored spoon theory with Emma, I ran out of spoons around lunchtime—which meant I theoretically had zero energy to get home from class, make dinner, or even get ready for bed.

“Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people,” Christina Miserandino writes in her post on spoon theory. As twenty-somethings, we should be at the peak of health and vitality. The world should be our oyster, and our dreams should seem more tantalizingly possible than ever. Unfortunately, it is not that simple for everyone. “ME stole from me,” Emma wrote. “It stole my personality. It stole my confidence. It stole my time. It stole my abilities. It stole friendships. It stole happy moments. It stole my university degree.” As harsh as this reality may be, she strives to balance it by embracing positivity more than ever. “The weird thing is that now that I’m better [compared to when the diagnosis was given], I’m happier than anyone else,” she explained one night as we sat on my bed talking. “It’s not that I’m better than anyone else, but when you scale it down, the things in your life are better.”

From Emma, I learned that sometimes the biggest realizations can come from a simple question caringly asked. No matter how uncomfortable or uncertain you feel, I encourage you to try to find the empathy and courage to ask that question. The answers you receive might change your perspective forever.

Interested in learning more? Here are Emma’s top three recommendations:

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