Masking RA: How to Stop Pretending We're Fine

by Lene Andersen, MSW Patient Advocate

We all do it — pretend that everything is OK when really, it isn't. We put on a brave face and a smile like it's a mask that can protect the tender, aching parts of us from the harshness of the world. Or maybe we're trying to protect others from the realities of a chronic illness such as rheumatoid arthritis (RA). Perhaps it's a bit of both.

It's not healthy. Not for those of us living with RA, nor for others who see only the mask we create to obscure it. Disguising our reality only widens the divide and further isolates us from those we care about.

Creating the mask

It's not just those of us who have RA and other forms of chronic illness who pretend in order to face the public or perhaps even those closest to us. All of us do this.

We learn from childhood to not share our private troubles, to keep to ourselves, to build the mask and the costume that goes with it. And yes, partly it serves a purpose. Society couldn’t function if all we did was tell each other how we really feel. No one would have time to grow food, repair cars, pass laws, or simply get through the day. So an etiquette developed to build relationships, but only just so far.

The mask serves a purpose for those of us with RA, as well. Sometimes, the only way you can get out of bed in the morning and do your day is by shoving the pain and fatigue deep down inside. Because if those symptoms bubble too close to the surface, you will spend the day weeping.

But all the energy you spend on pretending to be better than
you are has to come from somewhere. So it’s diverted from your day, from your coping skills, from your actual ability for real smiles. And so the mask solidifies.

Revealing the real you

The idea of taking off the mask can be scary. This thing that has supported you, that feels as if it has held you up on bad days — can you exist without it or will you fall?

I am by no means suggesting that you rip it off and immediately start sharing all of you with everyone, including strangers on the street. Instead, start small. Start with people you trust. Instead of assuring them that you are right as rain, maybe you let them know that it’s been a bad day. See what that feels like.

Some will respond with sympathy and a willingness to listen. Others won't know how to cope. Be patient with yourself and the people you choose to show the real you. And when you feel comfortable, expand how much you say and to whom you say it.

Thirteen years ago, I started my blog The Seated View, determined to write with emotional honesty about my life, including about my RA. At the time, my physical health was at a level where I simply didn't have the energy to pretend, although not pretending in public still seemed daunting. But I continued and much to my surprise, it felt amazing. More than that, it connected me to others who felt like me, who lived like me, who knew exactly what it was like.

Opening up, being your real self, is a gift. You give it to yourself, coming to know the freedom of being released from pretending. You give it to others, allowing them to help, to understand, and in return open up, as well. It builds a bridge between the sick and the not-sick, creates a community of people who care about one another. It allows us all to be ourselves.

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, She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.