If you ask anyone who lives with rheumatoid arthritis (RA) about the people who help make their lives better, the answer is often obvious. The focus is on the heroes of our lives: Our partners, siblings, parents, doctors, and so on. In these tales about the people who improve our lives, we rarely get further than those in our immediate circle. But there are many more amazing people who offer their support in unique and sometimes less-obvious ways. In this column, I’ll talk about the unsung heroes in my life.
I started using a wheelchair in my teens because of the impact of RA. This was back in the time before effective treatment was developed and I have a lot of damage in my joints. My arm reach is very limited, I don’t have a lot of strength, I can’t walk, and I need help with a lot of things multiple times a day. Thanks to using a power wheelchair, I can get to most places by myself: The grocery store, doctor’s office, bank, and so on. Once there, though, the barriers are endless. Except for ramps, automatic door openers, and a handful of other accessibility modifications, most of the way we interact with our environment is geared toward a person who is standing or walking, not seated in a wheelchair. Take grocery store shelves, for example. If you were sitting down and couldn’t lift your arms above your head, would you be able to reach the milk?
Of course, RA trips us up in many ways beyond lifting heavy things from high shelves. The unpredictable nature of life with this condition impacts everything else we do—or more specifically, can do today, but maybe not tomorrow. It means we need to ask for help, which can be difficult, especially if your RA is invisible. Then there are the ways that RA gets in your way, the unexpected moments that surprise and frustrate. Through it all, people tend to step up. Acquaintances, neighbors, and strangers offer help when you need it. This generosity of spirit reminds me daily of the basic goodness of the people with whom I share my world.
These are some of my unsung heroes:
The medical office assistant who goes above and beyond. My doctor is an important person on my RA care team, but their front office staff are unsung heroes. The medical assistant at my family doctor’s office has squeezed me into a packed schedule more than once, helping me get care without having to wait. My rheumatologist’s medical assistant has gone above and beyond when my RA acts up, serving as a conduit between me and my doctor. I just need to send her an email with the description of my problem and within a few hours, I get the call I need or a prescription faxed to my pharmacist.
The wheelchair technician with the “MacGyver” intuition. In “MacGyver,” the TV series from the 1980s, the title character saved the day with his proficiency and out-of-the-box thinking. My wheelchair technician is very much the same. I can describe a weird sound made by my wheelchair and he often knows the problem simply by a squeal versus a squeak, or the way a wheel feels. My personal MacGyver has seen me through simple problems and catastrophic ones (like the time my joystick box started smoking). He keeps me moving and independent.
Store clerks who help me get my groceries. One of the benefits of living in a particular place for years is getting to know people in the area. When I’ve needed to ask a store clerk for help getting the items on my shopping list that I couldn’t reach myself, it gave us an opportunity to chat. Once I did that a few times, they recognized me the next time I came to the store, offering help before I could ask. It saves me time and gives us both a moment of delightful human interaction.
The editor who is flexible with deadlines. Working with a chronic illness can be nerve-racking. When your RA throws a hissy fit so you need to call in sick, the ability to keep your job depends on an understanding boss. I have one. My HealthCentral editor gets it, giving our agreed-upon deadline schedule plenty of wiggle room so that when my body’s needs mean I have to delay delivery of an article, it’s not the end of the world. Asking for more time used to make my heart pound, but after years of always receiving a response grounded in compassion means I no longer get nervous when I need a few extra days. Her understanding means I don’t have to push through when my body can’t keep up and that means less flares and pain.
The pharmacist who solves problems before I ask. Before my RA was treated with biologics (the really expensive solution), I took other medications that cost hundreds of dollars a month. I still think of the pharmacist who gently and respectfully included an application to a medication funding program with my prescription. He didn’t mention it, didn’t bring up my financial situation where other people could overhear, just handed me an envelope with the application form. Thanks to him, my finances got healthier.
The neighbor who gets my mail. I live in an apartment building and my body is not able to twist in the way required to reach my spot in the mailbox area. Multiple times throughout the years, I had to rely on a neighbor to turn the key, get the mail, and lock up my mailbox at the end. They’ve all done it with a smile, a chat, and with respect. As a bonus, the small interactions have led to bigger chats and sometimes even become friendships.
None of us are islands, isolated from the world. Every day, we meet people who have the potential to be your unsung hero of the day. It helps to be open to it, to ask for help. It helps to bridge the gap and open up a path to life with your RA being just a bit easier.