While joint deformities can sometimes occur, RA is often referred to as an “invisible disease,” as its physical and mental symptoms aren’t always apparent from the outside. And most people without the condition don’t understand what life with RA is really like. No one ever wants to be diagnosed with a chronic disease, but those who have been forced to navigate life with RA often find that it can bring out the best in them: remarkable resilience, incredible strength, and even humor. Here are 12 things these RA warriors have learned about life with the condition.
1. Diseases don’t care how old you are.
“There’s this notion that RA is this ‘old person’s disease,’” says Cristina Schaefer, 36, a member of the Arthritis Foundation’s Patient Leadership Council. “One of the standard things I heard early on was, ‘Oh my gosh, but you’re so young!’” According to the Centers for Disease Control and Prevention (CDC), RA occurrence is highest among adults in their sixties, but it can be diagnosed at any age. Zac Spinosa, 23, owner of Forge Fitness in Ontario, was diagnosed at 16. “Being one of the small percentage of men that have RA, it was difficult for people to understand why I struggled to walk when I looked like an ordinary, healthy young kid,” he says. Managing the disease may require special devices or accommodations that are usually reserved for the elderly. “When I need it, I use a cane,” says Beth Madison, 52, a biology professor in Tennessee and patient advocate for CreakyJoints, an online community for anyone living with arthritis. “I have had complete strangers tell me, ‘You’re too young for that’ or “You don’t need that.’ They’re well intentioned, but completely misinformed.”
2. Waiting months for a doctor’s appointment is normal.
A barrage of doctor’s visits are a part of any autoimmune disease, beginning with your diagnosis. But thanks to a national shortage of rheumatologists, getting an appointment is never easy. An analysis published in February 2018 in the journal Arthritis Care & Research predicted that the U.S. will face a shortage of 4,000 rheumatology providers by 2030. For people living in rural areas, getting timely appointments can be especially difficult. It wasn’t unusual to have to wait two or three months for an appointment, says Effie Koliopoulos, 33, an RA patient advocate and writer based in Chicago. “I found that talking to a nurse at the front desk and saying, ‘This is urgent,’ can sometimes help, depending on the office.” “Telehealth has been a game changer for me,” says Madison, whose rheumatologist is four hours away. Being able to have a virtual visit means she doesn’t need to spend eight hours in a car in a single day for an appointment.
3. Expect to shell out for designer drugs like some people do designer bags.
The advent of biologic drugs to treat RA was a huge breakthrough for the arthritis community. But it was an expensive one, and many insurances did not cover biologics initially. “My parents were paying something like $1,000 a month out of pocket for my medication,” Koliopoulos says. Even with insurance, these drugs, which can slow or halt the disease’s progress, can cost thousands of dollars a month. If you’re having trouble paying for your medications, you can try looking into payment assistance programs from the drug’s manufacturer.
4. Unused sick days are not a thing.
RA flares can happen unexpectedly and are frequently severe enough to take you out of commission for an entire day. Being known as someone who calls out of work a lot can affect your career, and it’s nerve racking when you start a new job and don’t have sick days built up. Schaefer says that while every person and situation is different, she has always disclosed her condition to her employer up front. Most have been understanding, but even so, she says, “There is this fear of not being seen as professional, that coworkers are going to look at you as sick or weak or not come to you with tasks.” “Brain fog is very real,” Schaefer says. “It’s like pregnancy brain but way worse. You can be in the middle of a sentence and completely forget what you were talking about.” Madison, a biology professor, says it has made her adapt the way she teaches. “I can be looking at an equation on the blackboard and realize I don’t know how to solve it,” she says. “So I have the students break into groups and we all work on it together.”
6. FOMO is really COMO (certainty of missing out).
It’s difficult to stick to plans when you have an autoimmune disease, such as RA. Flares can happen anytime, without warning. “I can go from feeling good to wanting to curl up in the corner and cry in a matter of minutes,” says Madison. “One of the most frustrating aspects is how unpredictable this disease is.” In a way, unpredictability is the one thing you can plan for — and doing so helps keep your expectations in check. “I’ve learned to say no to things I know are going to make me feel worse later,” says Schaefer. And while you’re sure to miss out on some things, remember that you won’t miss out on all of them. “There are days when RA may win, and I end up in bed, and that’s OK,” says Madison. “But RA doesn’t win every day. This disease is not the end of joy.”
7. A good mattress topper is worth its weight in gold.
More than 80 percent of people with RA report fatigue as a symptom, according to the Arthritis Foundation. But sleep can still be elusive when your joints ache and you can’t seem to get comfortable. Worse, not sleeping can compound the problem. “Lack of sleep is one of my three main triggers for flares,” says Koliopoulos. Making sure your bedroom is as comfortable as possible is key to getting a good night’s rest. Madison says that after her diagnosis, she upgraded to a bigger bed with lots of soft blankets. Considering how much time you’ll be spending there, making your bed a happy place makes a lot of sense.
8. Zippers, jar lids, and door handles are your mortal enemies.
People who have never had painful, swollen finger joints can’t understand how it’s possible to be thwarted by little things like shirt buttons. “Getting in and out of the car is difficult,” says Madison. “Door handles can be nasty little things.” And she cut her hair short because “washing and fixing long hair was just this side of agony.” Schaefer, mom to a 4-year-old, recalls the difficulty she had opening bottles and snapping onesies when her daughter was an infant. Luckily, there are lots of tools and gadgets specifically designed to help people with RA, from enlarged pulls for zippers to shirts with magnetic closures instead of buttons.
9. You’d rather be in pain than pitied.
RA is a chronic disease, which means you’re never really pain free, but some days are more tolerable than others, Koliopoulos says. “A lot of people just fight through the pain,” she says. “They don’t want to complain.” They also want other people to see them as more than just their disease. “There’s this notion that you’re always sick,” adds Schaefer. “You get sympathy glances you don’t want.” Because so many people with RA suffer in silence, it’s easy for even those close to them to forget they are in constant pain — or to become overprotective. Spinosa recalls that people who were aware of his RA treated him differently. “They babied me and tried to make my life easier, which only made it more difficult to be independent with my disease,” he says. Ultimately, he decided not to let pain stop him from achieving his goals. “Autoimmune diseases give you the chance to prove to your body that even when it is attacking you, you are still in the driver’s seat,” he says.
10. Never underestimate the power of a cute Band-Aid.
Certain RA medications, such as biologics, are administered as injections. Even if you’re not afraid of needles, having to get a shot weekly or more frequently can take a toll. “In the beginning, the injections were traumatic,” says Koliopoulos. Now, she rewards herself for getting through her Monday shots by using fun Band-Aids and watching reality TV to take her mind off it. They’re small things, she says, but, “It makes me feel better.”
11. You are truly supported.
Even with the best possible care, people who have a progressive disease such as RA are bound to lose some independence. It can be tough asking even those close to you for help. “Letting go of your old life can be tough,” says Koliopoulos. “But when you have a diagnosis, you’re thrown into it. You don’t have a choice.” One upside is that people with RA will get to see exactly how far their loved ones are willing to go for them. “When you go through the disease, your family goes through it with you,” says Koliopoulos. They will be there, driving you to appointments, helping you get dressed when you’re too stiff, making you smile. And the RA community is really supportive as well.
12. You are incredibly resilient.
No one wants an RA diagnosis, but Schaefer, Madison, Spinosa, and Koliopoulos all say they’re at least a little grateful for their disease. “You get to go on a little bit of a self-discovery journey,” says Koliopoulos. “It’s weird to say, but I’ve done things I might never have done otherwise.” “My disease forged me into who I am,” says Spinosa. “So many people make excuses about why they cannot achieve goals or do things that others can. But what RA has forced me to learn is that you need to make every choice count.” He says he sees so many people with diseases like his who think there is no light at the end of the tunnel. “But there will always be a way out, as long as you keep searching,” he says. “As my RA specialist said to me, ‘Sometimes we make our own luck.’”
