We all say it — “I’m fine.” It is an easy response. It doesn’t require us to share how we really feel. Sometimes “I’m fine” means “I’m doing well, but nothing new to report” and sometimes it means “I don’t have the energy to begin to explain how I really feel.”
To recognize this disease and its impact, CreakyJoints launched the “Fine” is not Fine campaign with statements like "The limited energy caused by RA is difficult for healthy people to understand. Explaining why you're not lazy is depressing." and "I say 'I'm fine' because it is annoying to hear things like 'I have arthritis too. My knees hurt.' My disease impacts my whole body including my organs."
These sentiments capture how I’ve felt off and on for the last 14 years, but have been reluctant to say aloud to anyone but my husband, Alex.
Under the pain of Rheumatoid Arthritis sits a pile of emotions — exhaustion, confusion, loss, inadequacy, frustration, impatience, fear, anger. And like any other disease, we all deal with this differently.
I want to be strong, and I detest not being able to do even the smallest tasks. A few weeks ago, Alex was washing up for a homebrew project and I wanted to open up the bottle of sanitizer so we would be ready to brew by the time he dried his hands. Unfortunately, my body had other plans, and I was left frustrated with myself because I wasn’t able to complete a seemingly simple chore.
About a month ago, I spent Saturday night dancing in the living room to some classic country tunes, but the next day I was faced with a swollen foot and sharp pains. Sometimes this happens with my jaw, or my knees, and many times it happens for no clear reason to any number of joints.
Some days I feel “normal” with no aches, a huge range of movement, and plenty of energy. This back and forth is almost impossible to explain. When I’m not feeling well, I simply do not have the energy to share my emotions, and when I’m feeling well, I don’t want to dwell on those darker times.
So often with this disease, my brain is willing, but my body is not. That might be the most difficult part. While the pain and fatigue are unpleasant, they are bearable, but the idea that I have the mental capacity — the ideas, the creativity, the motivation, but not the physical capability to execute is humbling. Despite this, I find ways to cope and many ways to thrive and grow.
When my body is free from aches and pain, I create in healthy moderation. I write and design. I take on branding contracts with nonprofits and small businesses. I put my time toward Make a Mark, an organization that I started leading 12-hour design and development marathons benefitting local humanitarian causes across the globe or on Branding with Purpose, courses and educational content detailing the importance of a brand built on meaning. I explore new ideas and creations.
I don’t find it productive or healthy for me to complain or to settle into negative emotions. When I don’t feel well, I share my feelings with Alex, I rest, and I enjoy some fresh air. When I can’t create, I learn. I watch documentaries and read about topics that pique my interest. I learn more about myself and channel those truths that even my body can’t control.
So if it is exhausting to discuss, why am I writing this? Reading the posts from the “Fine” is not Fine campaign reminded me that I am not alone in how I feel, and that while my struggle is unique in some ways, it is not in others. I hope this post has not just put my own emotions into words, but the emotions of others. And I hope that when people who know someone with an invisible disease read this, they will have more understanding and compassion. It isn’t that your loved ones don’t want to share with you, but it can be far too painful to do so.
This is why I started Limitless. Over the past decade, I have searched for a place where I could connect with other young adults, particularly women, suffering from, and thriving with RA and other autoimmune diseases. It can be hard to find your people and a place where you belong when you don’t see yourself in the disease, when you watch a commercial or read a magazine and all you can see is the face of someone much older.
I hope that Limitless can be that place. A place where we can all share our stories, learn from one another and continue to grow and heal.
