How I Came to Terms With Taking Meds for RA

Here’s how to handle the stigma of treating your RA with medicine in a culture obsessed with an “all-natural” approach to healing.

by Lene Andersen, MSW Patient Advocate

Every day, I take medication for my rheumatoid arthritis (RA), including self-injection with a biologic drug I stash in the fridge, next to the milk and a jar of pickles. Combined with the number of meds I take to treat the side effects from my RA meds, it’s about 10 to 12 doses in a single day. Based on my completely unscientific social media research, this appears to be about midrange for the average person with RA. Moving from a life of health to one punctuated by piles of prescriptions can be a challenge for anyone with chronic illness, partly because it’s a lot to remember, but taking medication also comes with judgement and a sense of stigma from others and inside yourself. How do you find peace with the stigma and come to terms with taking all those pills you actually need very much? I have some pointers.

First, let’s talk about the herd of elephants barreling into the room whenever there’s talk of using drugs (legal kinds) on a regular basis. Taking medication gets a bad rap. It’s often seen as a characteristic of the frail and elderly and not even my 85-year-old mother will admit to being either. If you’re younger, there’s a sense of personal defeat when you fail to get better through the powers of wishful thinking. Somehow, you’re supposed to be magically and almost aggressively healthy, never submitting to illness. And yet, modern medicine, including many different treatments, is the reason we are healthier and live longer than ever before. It’s a bit of an oxymoron, but life is rarely logical.

No one likes taking medication. It’s annoying having to remember when to take what, managing prescription renewals, pharmacy pickups and co-pays, monitoring for side effects, and sporting those purple-to-yellow injection-site bruises polka-dotting various parts of your bod. But the reality is that when you have an illness, it needs to be treated. That’s easier to understand when you have, say, an infection that gets attacked with antibiotics and then goes away. But undergoing treatment for the rest of your life without it curing the illness? That’s harder to wrap your head around.

Which brings me to my first tip:

Medication is your friend. A switch happens when you are diagnosed with RA. Before, you might have had the luxury of seeing medication as something to be avoided unless you feel really awful, but carrying that attitude forward into life with a chronic illness can work against you. Simply put, when you have RA, medication is what keeps you healthy—or as healthy as possible.

As someone who grew up in what I jokingly call the “Dark Age of Rheumatology,” that is, the time before treatment, I have seen first-hand the consequences of not taking medication, because none of us could back then. It was common to end up in a wheelchair within 10 years of diagnosis, for joints to carry the visible characteristics of untreated arthritis, and (trigger warning) to die earlier than your peers due to the impact of inflammation on your heart and other internal organs. Now, thanks to the advances in treatment—especially biologics—that mortality gap is almost closed, RA is increasingly an invisible illness, and it’s rare to become a full-time wheelchair user. This change has been an incredible thing to witness and it’s all due to us now having treatment available.

Chemicals are everywhere. When I mention my pile of daily pills to someone who doesn’t have a chronic illness, they look startled and concerned. That’s a lot of chemicals, they say. Wouldn’t it be healthier to be all-natural? Hiding a deep sigh, I launch into the explanation of the startling positive impact medication has had on my health. For instance, for the first time in my life, my blood test reports are normal. Let me say that again so you understand how astonishing this is: On the report in my file, for the first time in decades, my blood tests show up the reassuring black of normal, instead of a line of reds.

Many people equate chemicals with something toxic, but the reality is that everything in our world is made up of chemicals, even us. Highly simplified, the word “chemicals” is just another word for matter, which describes the composition of the earth and everything on it. The grass on your lawn, your phone, the sandwich for your lunch and the plate it’s on, your pet, your makeup, and the meds that treat your RA. It’s all chemicals. Knowing this has made me feel a lot better about taking the meds, as well as provided valuable support for shrugging off any suggestions that I should go “all-natural.” Because in a very real sense, I am.

Live openly. The status of your health is private, which for many means keeping it hidden from the world. And what the world doesn’t see becomes abnormal, even weird. That’s one of the reasons many feel they have to hide the fact that they take medication—when you have a chronic illness, it can feel like protecting yourself from questions and comments and misguided judgement. But hiding this aspect of your reality can also make it more difficult for others to understand.

I stopped being private about my medication a long time ago. Instead, I shout the miracle of suppressed inflammation from the rooftops, share the reality about the pain treatment that keeps me going, and pull my meds out of my purse in full view of everyone when out in public. In other words, I am working to normalize the experience of taking medication to treat a chronic and potentially debilitating condition. By showing others just a bit of what is necessary when you live with RA, their understanding deepens. And that increases the likelihood of support and building relationships with allies.

Like adjusting to any other change, developing a positive relationship to your medication can take a while. Connecting more deeply to how the meds are helping you live your life and incorporating them as a regular and normal part of your day, just like your morning coffee or walk with the dog, can go a long way toward making you feeling much better about their role in your life. To me, it means embracing that joke of “better living through chemistry!” as a very real part of my life.

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.