How chronic illness and disability are portrayed in media and the importance of daily choices for improved quality of life

Let’s say that you have it all together: you are accepting your illness and it is enriching your life. Now turn on the TV, pick up a book, watch a play, or listen to a song. How illness and disability are portrayed in our culture has come a long way in the last century, but we still have a long way to go. Many of these portrayals are still romanticized versions of what disability and illness look like, and at the end of the story the disabled person often either overcomes an obstacle to fit in with the “normal” crowd or dies. Many plots focus on their differences as a plot twist or as a terrible burden to overcome, and disabled people are rarely featured in rom-coms or scary movies. In literature and films, the sick and disabled are represented largely by outdated tropes. Most annoying for those with long illness is the myth of the ill or dis- abled person who is miraculously cured or whose mere existence is a moving inspiration to those who cannot imagine living the life of the unwell. Newer media are working on changing these depictions, but it can be overwhelming to see the contrast between your life and the stereotypes of your illness. During much of the COVID-19 pandemic, the public messages were stressful for people with chronic illnesses, who were told that their illness might make them more likely to get COVID-19 or to have severe complications, including death. Despite the fact that a large portion of the world’s population has a chronic illness or disability, the message from news outlets and officials was that it was safe for people to go without masks unless they were sick. The dismissal of the chronically ill as disposable is all too common, and the pandemic just highlighted some of the ways in which public health messaging could be made more inclusive. Such messaging is often aimed at people who are “healthy” and “able-bodied” and ignores the impact on the growing number of “others.”

As the pandemic’s impact shifted, a new group of chronically ill post-COVID and long COVID patients flooded health care systems, which were already unable to provide adequate care for many people with long or chronic illnesses. The volume and medical needs of those affected by COVID-19 down the road are likely to change how we approach long illnesses.

After my diagnosis I was like, maybe I’ll be one of those people who runs a half‑marathon on the one‑year anniversary. It’s because those are the narratives that we are given in our society; that the appropriate way to have a different body is to overcome it, to conquer it. Therapy helped me realize, “Oh, no, I don’t get to overcome this. This is me now, and I have to make sense of it.” I gained strength from reading books about people with stories similar to mine. Seeing how they claim their identities and journeys. I met others whose identities were changing from illness and created a support network that way. Learning more about illness and disability studies, reading books and learning about the research, was empowering to me.

Diagnosis

When I got my first diagnosis, I was quite sure it was wrong. But I went from being ignored and treated like I was crazy to my symptoms being taken seriously and treatments being offered. I was so happy I was seen, I didn’t care what they did to me. They were wrong, and I was given harmful, pointless treatments for years until I finally pushed to see a different type of doctor. In the end, the most helpful treatments for my disease are having supportive doctors and therapists and mostly trying to have the healthiest lifestyle I can maintain. Sleep, good diet, happy relationships, a nice walk in the sunshine, and a good therapist have all helped me live a life that reduces my symptoms enough where often I don’t need loads of medication and therapies. This works for every condition, so I am perplexed why they aren’t given to everyone who is struggling with difficult symptoms. Like, why do we spend so much time on naming the disease and no time teaching us how to live a life that reduces the pain our disease brings?

Our whole lives we hear the same beautiful story again and again: a vibrant person experiences changes in their body that limit them, no one knows how to help, a hero figure steps in and solves the problem, and then they live happily ever after. We want to believe these stories because they offer us hope if we, or people we love, are suffering from long illness. But these myths can be harmful when they teach us that differences in our bodies are problems that need to be fixed or solved.

Our current biomedical system of care has developed around these myths. The media’s limited views of illness are reinforced by how practitioners are taught. To be fair, medical students must learn hundreds of years of data in a short time, and using stereotypes and well-known stories is one important way in which people learn. However, putting a person in a box with a diagnosis doesn’t work all the time. Many long illnesses don’t fit into these boxes. When your practitioner can’t fit your symptoms into a diagnosis, you might feel dismissed or misunderstood. On behalf of your practitioner, we apologize. It is not their intention to make you feel that way. That this happens as often as it does is one of the many unfortunate side effects of the way much of modern health care is delivered, but that is beyond the scope of this book. During your search for the right diagnosis, you might be sent to other medical centers with more expertise in your symptoms or more appropriate testing facilities. Even in these specialized practices you may experience negative interactions with practitioners. You should always seek out second and maybe third opinions. Medicine is a team sport. If only one practitioner thinks you have a particular condition and wants to treat you in a certain way, that should give you pause.

Some people who get the “right diagnosis” might feel happy after experiencing the sometimes isolating symptoms of long illness. Humans like naming things; the name of our illness helps us explain to other people what we are going through. A diagnosis validates our concerns and makes us feel like we were complaining for good reason. But a diagnosis isn’t always all it’s cracked up to be.

A diagnosis isn’t a cure. Even with a diagnosis, illnesses rarely change overnight. You can have a constellation of symptoms that right now we call disease X and treat with treatments A, B, or C. But symptoms and diagnoses can change over time. Your symptoms are just as valid and real as they were before you had a label for them. And for some of you, treatment A, B, or C may not do as much to improve your quality of life as you had hoped.

On the other hand, having a diagnosis is very handy. You can get access and coverage for certain treatments in different health care systems. Maybe you can get a disabled person’s license plate and a care aide or other assistance to help with tasks; maybe a diagnosis makes it easier to get a wheelchair paid

for. These things add up. But having a diagnosis doesn’t guarantee that your condition will get better, or that you will receive more respect now that your symptoms have a name.

Without a diagnosis, I am powerless. I’d rather have the wrong diagnosis and be seen, than be ignored and treated like I am crazy or annoying.

I encourage people who are sick to think about a diagnosis as a tool. It is not a life sentence. Getting a diagnosis is the way to get resourced, and that’s a good thing. And I would have wanted my younger self to know other people who are going through complex medical issues, and to find someone I can talk to about my illness, not necessarily the same illness, but someone I can share a similar language with. That has been really helpful and has left me feeling less alone. It helped me realize you can be two things at once. You can wish you didn’t have to deal with the inconveniences of having a different body, while also accepting it as being an important part of who you are.

“The question is not how to get cured, but how to live.” Post-diagnosis, you are the same person with the same symptoms. Hopefully, the treatments and support from your community will improve your quality of life. But there is a reason that we focus so much of this book on how to improve your daily choices and habits and how to manage complex symptoms. These changes will get you back on track and help you no matter what symptoms you have. Whether or not you have a diagnosis, and whether or not you’re in treatment, you can improve your quality of life and your feeling of control and understanding of what is going on in your body.

Juliet Morgan is a neurologist. Meghan Jobson is an internal medicine physician. They are the authors of Long Illness: A Practical Guide to Surviving, Healing, and Thriving.