Breaking the Rules of Being a Chronic Illness Patient: Attitude, Ability and Advocacy

Patient Expert

A diagnosis of chronic illness brings a host of new things into your life. Some of the obvious include frequent doctor’s appointments, multiple medications, and symptoms that affect your day-to-day life. Not so obvious are the unspoken rules of being a chronic illness patient. Although they are well established, breaking these rules can actually be good for you.


Our culture values independence, but that goes out the window once you get a chronic illness. All of a sudden, you’re expected to be meek and passive — a patient rather than a person. Compliance is actually the term used in medicine to describe a “good” patient. That is, someone who complies with what their doctor tells them — someone who follows doctor’s orders.

That might work if you have a sprained ankle or strep throat, but it may not be the best option when you have a chronic illness. You are the best judge of what risks you want to take with medication, what a reasonable side effect is, and no one knows your body better than you.

After being told her Lyme disease was all in her head, Allie Cashel wrote a book about her experience and started the Suffering the Silence community. It brings together a wide variety of people with chronic illness, especially young women, to tell their stories and break the silence.

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Allie Cashel, author of Suffering the Silence.
Allie Cashel


When you have a disability, you soon find out that the world views you as asexual. Much of the same happens with chronic illness. Others start calling your partner a saint and if you’re dating, you’ll encounter people who don’t react at all well to hearing about your chronic condition (although many do). And sex? Most doctors don’t talk to you about it at all as if this part of your life was turned off the minute you got your diagnosis.

Kirsten Schultz has Still’s Disease and founded Chronic Sex as a safe place for people with chronic conditions to talk about intimacy and learn from each other.

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Kirsten Shultz, the candid founder of Chronic Sex.
Kirsten Shultz


People with chronic illness don’t do intensive physical things, right? Wrong. There’s been a shift in recent years to people with chronic conditions turning to physical activity as part of their treatment regimen and as a way of connecting to life. Of course, there are times when the condition gets in the way and results in a more quiet approach, but we all push our boundaries every day. For some that means putting for the physical effort to get the kids off to school. For others, it means more intense physical activity.

Miriam Diaz-Gilbert lives with rheumatoid arthritis (RA), Gastroesophageal Reflux, and myelopathy of the spinal cord. She runs ultramarathons.


I remember once talking to someone whose aunt had RA. They told me she’d always had a smile on her face and never shared the difficulties she went through. These days, there is a much different view of what courage means when you have a chronic illness. Living your life, yes, but also talking about it. Silence gets us nowhere — sharing our stories and advocating for change brings awareness about the challenges we face. This in turn can increase understanding and may even lead to better funding for research.

The Arthritis National Research Foundation, also known as Cure Arthritis, funds arthritis research and works to raise awareness through for instance, their famous blue bracelet.

The infamous Cure Arthritis blue bracelet – showing its power.
Cure Arthritis

There are many rules for how we should behave, as citizens and as people with chronic illness. Not all of them make sense and some very definitely deserve to be broken. Doing some thinking about the expectations of others, what perceptions they reflect, and whether they make sense in your life can be a wonderful exercise in taking back control.

Make your life reflect who you are, not who other people think you should be.