The 'Secret Society' You Belong to When You Have Chronic Illness

I belong to a secret society! Masons? Nope. Scottish Rite? Nope. Illuminati? Nope. I am a member of the chronic illness secret society, rheumatoid arthritis chapter. If you are a member of the same secret society, you totally get this. If you don’t belong, you are now curious. However, I didn’t choose this secret society – it chose me. It chose many of my “brothers” and “sisters.” And, although we each belong to different chapters, we are connected in a way the world doesn’t understand. We speak a secret language and most of us live a secret life.


We attend secret meetings, too. The meetings may happen every month, every other month and/or every three months. It really depends which chapter you belong to and how well your studies are going. The world calls them doctor appointments, but we know them as a gathering of our members in one room – the waiting room. While in the waiting room, we find ourselves wondering to which chapter the others who wait with us belong. Sometimes we strike up conversations just because we know we are with “our people.”

OK, well, chronic illness isn’t a secret society, but it sure feels like it is. We walk amongst the healthy people and no one knows what we are silently carrying. For many of us our struggle is invisible. We don’t look like we belong to this secret society, but when in a crowd we can spot each other a mile away, like a familiar face. While at the grocery store, I spot the woman limping down the cereal aisle and I recognize her limp. It isn’t a limp she got from spraining her ankle at the gym. And as she reaches for the box of Cheerios, I can see her struggle to grasp it and place it in her cart. As I limp by dragging my left leg, I smile a smile that says, “I belong to your sisterhood.”

When we meet each other outside of the waiting room and in the healthy world, we connect in a way that is deeper than others because we know the world to which we belong is not an easy one and that our world can be secret and isolated. When a RA warrior meets a lupus warrior, they feel a connection deeper than just having autoimmune disease. They begin to talk about rheumatology appointments and medications and sometimes a lifelong friendship is formed with a total stranger. Don’t laugh, it has happened in my life. When people ask me how I met my best journey friend, I often want to reply, “methotrexate.”

Personally, I am sorry there are so many in my secret society, but I have to say we truly are an awesome group of people. I love our members. There is so much compassion in our hearts, so much empathy in our thoughts and we value our relationships deeply. We cherish the little things and the little life moments more than others. We know each other’s secret struggles, secret pain, secret isolation and the little victories of the day, like showering.

While our society is secret, we do our best to raise awareness so we can proudly wear our member jackets without puzzled looks from those who don’t belong. We long for our world not to be secret. Not that we want to recruit new members – our hearts hurt when that happens – but we want people to understand why we park in “that” space, need to eat at “that” moment or why we can’t do “that” tonight.

If you don’t belong to our secret society and you encounter us out, please feel free to ask us about our chapter. We would love to tell you our story. If you are a member, I will see you at our next meeting. Be sure to say “hi” if we make eye contact in the waiting room. I would love to talk with you.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via VladimirFLoyd.

Find this story helpful? Share it with someone you care about.

Related to Rheumatoid Arthritis

The writer in an electric wheelchair at a store.

What It's Like to Be Diagnosed With RA After College Graduation

I never expected the summer after college graduation to be easy. After a relentless semester of job rejection after job rejection, I graduated without a clue about my next steps, so off I went to spend the month dog-sitting in my hometown in New Jersey. The days quickly felt long and lonely. So, I did [...]
businesswoman looking out her office window

Why I'm Not Looking Forward to Retirement as a Person With Rheumatoid Arthritis

In less than two weeks I will be 40. Some of you are thinking, “She’s old!” and others are thinking, “She’s young!” What it means to me is I have hit a time of life when my peers and coworkers are talking about retirement. And cue, feeling old! I mean, nothing screams “adult” more than [...]
silhouette profile of a young woman touching her forehead on a white background

The Challenges of Talking About Rheumatoid Arthritis

Living with rheumatoid arthritis is hard; talking about living with rheumatoid arthritis, especially to loved ones and friends, is harder. Like the disease itself, there is nothing simple about putting the experience into words. How does one express the level of uncertainty that is part of our daily experience? How do you describe your level [...]
A woman talking to her doctor.

Why Having a Relationship With Your Doctor Is Good for Your Health

Dear chronic illness newbie, First, let me say that I know you are probably scared and confused. You are also likely relived to know that you aren’t making your symptoms up and something really is wrong. But, you are also trying to figure out if what you heard is right, “There is no cure, only management of this [...]