Managing RA (or Any Chronic Illness) Is a Full-Time Job

There's a lot of hidden work in disease management, like calls to insurance companies and loads of research.

by Lene Andersen, MSW Patient Advocate

I am exhausted. My doctors would tell me this is due to the stress of living with a chronic illness; to the fatigue factor of rheumatoid arthritis (RA); to potential side effects from medication; and to poor sleep (thanks, chronic pain). But none of that is the whole story.

No one tells you that living with a chronic illness is also an added workload, a sudden full-time job. Just thinking about it will make you dizzy, and it can feel really urgent, as if you’d better hustle on that learning curve, because your health depends on it.

Managing my RA and everything that comes with it is a constant juggling act. I wear so many hats I need an extra head (or three). Here’s what a typical day looks for me:

Managing Meds and Planning Food

Every day, I let my inner nurse come out to play, making sure I get multiple medications at the right times, including injecting myself with chemo drugs and safely disposing of needles. My condition is unpredictable, changing what I feel every day, and I oversee this with an eagle eye, adapting treatments and actions (and naps) accordingly. I’m also a dietitian, monitoring my gastrointestinal system and assessing which foods help and which hurt. Creating an optimal diet to support my health means learning about nutrition, reviewing recipes and ingredients, and learning new dishes.

Research and Development

Learning how to manage my symptoms and live my life with and around them requires the skills of a medical researcher. This means frequent study of RA and the other conditions I have, which all jockey for attention like a pack of toddlers. Lawyerly expertise is necessary to know my rights within the healthcare system, the laws that apply to working with a medical condition, as well as understanding the Byzantine maze of insurance, healthcare, and government agencies.

Scheduling

How do I keep track of all of this? Let me introduce you to the project manager side of me (I call her Janet). She is responsible for the administrivia of my chronic illness, and she is at it every day. “Janet” arranges medical appointments and tests with multiple doctors, follows up for results, orders timely refills on prescriptions, pays the bills, and spends hours on the phone whenever (say) the insurance company that’s supposed to cover my meds randomly decides that today, they won’t.

My life has the kind of inexplicable twists and turns normally only seen in supernatural thrillers, with the same cliffhangers, suspense, and regular possession by an inner demon called RA. Living through it requires constant vigilance and work.

And that, my friends, is why I'm always tired. Between battling all the tasks necessary to battle life with RA, there is also the profound fatigue associated with my condition, plus the all the other tasks of simply having a life—grocery shopping, taking care of family and pets, keeping down the chaos in your home. Oh, and then there’s also your “real” job, the one that comes with an actual salary.

Most of us don’t have the cash to hire an entourage of specialists. Instead, we suss out how to manage the unique needs of that intersection between life and medical condition. It can seem intimidating and overwhelming, but don’t despair. There are ways to make that learning curve look less like Mount Everest. Eventually, many of these tasks become second-nature, but be prepared for random flares—of your condition, insurance problems, and more—that can take over your life.

Find out what you don’t know. Knowing what you don’t know is the start of making a plan to learn. Every time you find yourself going “I wonder what…” write it down. This will give you a list of questions for your healthcare team, your friends, family, and community. This can include topics like doodads to make your days easier, how to modify yoga practice for your RA, or what to do to calm an RA flare.

Then read. Find trusted websites with quality information that is reliable and credible. One way to check this is to make sure that that articles on the site have references from recognized journals and include interviews, reviews and articles by medical professionals, as well as people actually living with the conditions.

Talk to the community. Whether online or IRL, find your peeps and ask questions. Meeting others who have the same condition and know exactly what you’re going through can be liberating, empowering, and a great source of information. Those of us who have been through it are always willing to share tips so you can take a shortcut.

Fill the gaps. Remember that list of questions? It’ll tell you what you need to learn. Maybe you roll with the self-injections like a champ, but stumble on the organization or something else entirely. Ask for help from the usual suspects (doctors, loved ones, community), but also consider whether a class or two might help. Websites like Skillshare and Teachable has thousands of courses that fit most budgets and learning needs.

Becoming an expert takes years, if not decades. When you feel frustrated because of the masses of information or not knowing it all in one fell swoop, take a deep breath and narrow your focus. Keep the hunt for info to what you need to learn now, in the present and save the bigger topics for when you get out of stormy waters. And trust me: You will.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.