Getting an arthritis diagnosis is a life-changing event. In some ways it’s kind of like getting married, losing your job, or finding out you’re going to be a parent: From that point forward, things will be different. With a chronic illness like arthritis, that fear of the unknown can leave you feeling scared and unsure what to do next.
“Many people feel paralyzed after receiving a diagnosis of chronic illness like arthritis because they start imagining what their life will be like going forward — and how it will be bad. Or people worry that all the pain, discomfort, and inconvenience they’ve been experiencing is going to be their new normal, and that feels devastating,” says Lisa S. Larsen, PsyD, a licensed psychologist in Lancaster, California, who specializes in treating people with chronic illnesses. This anxiety can put you into a state of shock — no wonder you don’t know what to do next.
But after the initial shock of an arthritis diagnosis wears off it’s important to act — as arthritis is a degenerative disease and time is of the essence.
“The first thing patients need to know is that many chronic illnesses can be successfully managed and you can learn how to reduce stress, pain, and the impediments of the disorder over time,” Dr. Larsen explains. “Human beings are extremely adaptable and with enough research, digging, and help from others, you can still have many of the things that you want from life. Is it more difficult sometimes to achieve this? I’d be lying if I said it were easy but you can do this.”
She suggests four steps to start accepting your arthritis diagnosis and getting yourself in the right mind to act:
- Learn as much as you can about the illness and how to manage it.
- Have an open mind to treatment options.
- Remind yourself that *you* are not the illness or difficulties that you face.
- Know that there will be some grief involved in adjusting to your new normal.
To help with the practical side of things, we talked to people with arthritis about the steps they took (or wish they had taken) right after they were diagnosed so you can figure out what to do next too.
Connect with Your Health Care Team
1. Get all the contact info for your medical team and save it in your phone
“My illness, spondyloarthritis, can be extremely variable. The first time I had a major ‘episode’ it was immensely stressful to figure out what was happening and what I should do next,” says Allison S., 31, of Cleveland, Ohio. Her first instinct was to ask her doctor but she didn’t know whether she should call, send a message, or wait it out for a certain amount of time. “Now I tell everyone to get this information at their first appointment. Ask when and how you can contact them, who you should reach out to [the nurse, the doctor, etc.], and when it’s okay to wait,” she says.
Program these numbers into your phone right away so you don’t have to hunt down business cards or scraps of paper when you’re in pain. If typing it all in feels overwhelming, snap a pic of the information and save it to a medical folder in your photos.
2. Ask about vaccines
People with inflammatory arthritis are more susceptible to infections like flu and pneumonia, as well as complications from them. Many disease-modifying medications also suppress your immune system, which makes you more vulnerable to infection. It’s important to get up to date on your vaccines before you start many treatments for arthritis.
“There are a lot of misconceptions about vaccines out there,” says Orrin Troum, MD, a rheumatologist at Providence Saint John’s Health Center in Santa Monica and faculty member at the Keck School of Medicine at University of Southern California. “But not only are vaccines not harmful, they’re essential for people with rheumatoid arthritis.” He recommends getting the flu shot every year, the shingles and pneumonia vaccines, and staying current with all your recommended vaccines and boosters.
3. Discuss comorbidities
Brandy M., 20, of New York City, was diagnosed with juvenile rheumatoid arthritis when she was just a child yet it wasn’t until last year, when she was an adult, that she learned that her arthritis made her more susceptible to other diseases like heart disease and osteoporosis. “Tell your doctor about your family history and ask what your risks are and if there are certain treatments you should avoid,” she says. “It may be scary to know but then you can take steps to prevent them or look for early symptoms.”
4. Start medication right away
After being diagnosed with juvenile arthritis in her teens, Mariana M., 22, of Venice, California, says the biggest surprise was how time sensitive starting treatment was. “My doctor pushed right away for me to get on meds but I thought I had some time to think about it, maybe try other options first,” she says. Then her doctor explained that she already showed extensive damage to her joints and every day that she left the inflammation uncontrolled would lead to more irreversible damage. She listened and says the medications have made a big difference in slowing the progress of her disease and reducing flare-ups.
5. Get in the weeds with medication details
Arthritis treatments aren’t one-size-fits-all. Finding the right treatment plan may take fine-tuning over months or years to find what works best for you. Be an active participant in this process by asking questions about medication timing, how long it takes to kick in, how it interacts with other treatments, how to tell if it’s working, and what the side effects are, Brandy says. She was surprised to discover recently that some of the treatments she’d been using for years — particularly high doses of NSAIDs — can have serious long-term side effects. On that note…
6. Ask about side effects
Daily steroids greatly improved Michelle A.’s pain from her psoriatic arthritis and day-to-day functioning but they caused the 48-year-old from Washington D.C. to have a severe depressive episode, she says. “I had no idea that steroids can impact your mood or even trigger a mental illness until it happened to me,” she says. “Doctors should tell you about side effects but sometimes they don’t so it’s important to ask about the mild and serious side effects before you start any treatment.”
“Ask about all the side effects of your medications, not the just the common ones, and what are the early signs to look for,” she explains. “Also ask what you can do now to prevent long-term problems, especially to protect your liver and kidneys since those organs are affected by a lot of arthritis medications, and what tests you need to monitor the situation.”
7. Don’t get fooled by ‘miracle cures’
When Mariana posted about her diagnosis on social media, one of the first responses she got was from a friend selling essential oils that she swore would heal Mariana’s arthritis. “She sent me all these amazing testimonials of people saying how they helped them and I decided to try it,” she says. “Biggest mistake ever.” While she says they smelled nice, they did nothing for her pain or inflammation. Since then she says she’s seen people touting lots of supplements that say they can cure anything, including arthritis, but she’s much more wary now. (P.S. Always clear any supplements, even “all-natural” ones, with your doctor before taking.)
8. Get an injection… of patience
Treating arthritis is a long game. You might not see immediate results, Allison says. “When I first got diagnosed I read a lot of stuff on the internet about people who were fully recovered and living basically normal lives, but I didn’t realize how much time and trial and error it had taken them to get to that point,” she says.
Not only can the process of finding the right treatment plan be lengthy, but many disease-modifying medications don’t start working right away, so it takes time to know if they are helping or if you’ll have side effects. For instance, Allison started on a biologic medication that many people raved about but after a month developed an allergy to it. “So it was back to the drawing board, which was really depressing and frustrating but I’ve learned this is just part of arthritis and I need to be patient with myself and my doctors,” she says.
9. Don’t scare yourself with Google
The first thing that Michelle did after getting her diagnosis was something many of us would do — go home and Google it. “The first thing that popped up were all these scary pictures of people with deformed hands and awful skin. I thought ‘this is my fate’ and it was the worst feeling,” she explains. Thankfully she thought to bring it up to her doctor who pointed out that many of the pictures of arthritis on the internet are extreme cases and often ones that went for years without treatment.
“He said, ‘People whose hands are fine don’t post those on the internet, so of course you’ll only see the bad ones’ and I realized he was right,” she says. The internet can be an invaluable resource but make sure you read it with a critical eye, keep things in perspective, and fact check what you read with your doctor.
10. Apply for an accessible parking placard
When Jen P., 28, of New York City, was diagnosed with psoriatic arthritis she was determined to not let it change her life. But it did. One major way was how it affected her commute. When she has flare-ups she needs to drive instead of walking or taking public transportation. “I wish I had gotten an accessible parking permit when I was first diagnosed, it would have saved me so much pain and wear-and-tear on my joints,” she says. Even if you aren’t totally sure you’ll need it, apply anyhow as it can take time to get approved and that way if you ever do need it, you’ll have, she adds. Learn more about how to apply for an accessible parking permit.
11. Get a variety of heating pads
Heat can be a powerful tool for reducing arthritis pain but you can’t exactly sit in a hot bath all day. Enter: heating pads. As soon as you get diagnosed, stock up on a variety of different kinds, says Angie K., 50, of Draper, Utah, who has osteoarthritis. She says she sleeps with a heated blanket and will heat up her gloves in the microwave in the morning. You can also buy heated mattress covers, neck rests, foot massagers, and muffs. Another option is to stash a few packages of hand warmers (yes, like the kind you use for skiing and watching football games) in your purse or car.
12. Get a jar opener
“I know it sounds silly but buy one today,” Jen says. “A jar opener is such a small thing but anything that saves you a little bit of effort or pain is 100 percent worth it.” She recommends this EZ Off Jar Opener as it can be mounted under a cabinet and opens jars of any size. “It’s so convenient I’d use it even if I didn’t have arthritis,” she says.
Insurance and Work
13. Call your insurance company — today
Health insurance is a must for people with a chronic illness like arthritis but unfortunately not all insurance plans cover everything you need. This is something Leon S., 65, of Atlanta, Georgia, found out the hard way when he racked up huge bills when one of the specialists he saw for his gout and reactive arthritis wasn’t “in network.”
“I wish I’d called my insurance as soon as I got my diagnosis to figure out what exactly was covered and what wasn’t,” he says. “I assumed the doctor’s office would tell me but they didn’t.” He also discovered that a treatment he’d heard promising things about wasn’t covered by his insurance. “I’ve learned now that you have to call first, about every little thing, and don’t ever assume something will be covered.”
14. Talk to your boss
Who, what, and how much to tell your work about a life-altering diagnosis like arthritis is a really personal decision but you’re probably going to have to say something, Leon says. “I work a job where I have to be on my feet a lot and it became obvious something was going on. I’m a pretty private guy but I eventually talked to my boss and HR,” he says. “I wish I’d done it sooner. There were some accommodations for documented disabilities like mine that I wasn’t aware of before but have been really helpful. And my boss was really understanding.”
15. Consider supplemental insurance
Even if your health insurance plan is good there are going to be things it doesn’t cover and those things add up quickly, says Peter R., 52, of Minneapolis, Minnesota, who has multiple sclerosis as well as osteoarthritis in his knees and spine. Copays, assistive devices, over-the-counter medications, physical therapy, and other things you pay for out of pocket can easily total hundreds of dollars every month. He purchased extra supplemental insurance to help cover that gap.
16. Fund your HSA
A health savings account allows you to put away money for medical expenses before taxes. It takes a little bit of foresight to remember to contribute to the account and to use that card when paying for things but if you have a chronic illness the savings really add up over time, Peter says. “I set my paycheck to have $200 each month go straight into my HSA,” he says.
17. Find a personal trainer who specializes in arthritis
“I was diagnosed with ankylosing spondylitis when I was just 25 — I’m 32 now — and if there’s one thing I wish I’d known when I was first diagnosed is how important exercise is for autoimmune types of arthritis,” says Brianne F., 32, of Redding, California. Walking every day and doing a gym workout three to five days a week has been essential for controlling her AS symptoms but the real key for her was finding a personal trainer who specializes in arthritis to help her design a workout plan that would help her body and not injure it further, she says. “My trainer is pricey but she’s worth it. She pretty much saved my life,” she says. “Plus, she struggles with an autoimmune disorder herself so she really gets it.”
18. Stock your pantry with healthy foods
“One of the things I’ve discovered that makes a huge difference in how I feel is what I eat,” Michelle says. “Avoiding sugar, gluten, and processed foods really reduces the amount of inflammation and flare-ups I have — it’s really hard but it’s worth it.” This is something she wishes she’d started the day she got diagnosed, instead of taking years to figure it out. Now she says she tells others who are being tested for arthritis that step one should be to “go home and clear all the crap out of your pantry and stock up on fruits and vegetables.” Learning how to make a healthy smoothie that satisfies her sweet tooth while still giving her a healthy boost of fresh produce has been a gamechanger, she says.
19. Find a support group
“The best advice I got when I was first diagnosed with rheumatoid arthritis was from the nurse who handed me a flyer for a local support group for people with arthritis,” says Brittany P., 40, of Melbourne, Australia. The group provided support, resources, information, and a shoulder to cry on. “They understand me in a way no one else can,” she says. She’s also found a lot of help and comfort in online support groups, especially in the r/Thritis group on Reddit.
20. Have a good cry
Osteoarthritis has completely upended Angie’s life. “As a mother, a nurse, and someone who does woodworking and home renovations in my spare time, my hands are essential to everything that makes me, me,” she says. “Being in constant pain plus not being able to do what I loved gutted me.” Telling herself to “suck it up” or “other people have it way worse” made her feel even more hopeless. Instead, she says it was important to give herself time to grieve and to mourn after her diagnosis.
21. Find a go-to way to explain your disease to others
Figuring out exactly what your disease means for you and your life is hard enough but explaining arthritis to others can add a whole other layer of pain and frustration, especially if they don’t take arthritis seriously or believe these myths about arthritis. You can help yourself and your loved ones by finding an analogy that works for you, says Genevieve L., 30, of Melbourne, Australia, who has rheumatoid arthritis. Her favorite is The Spoon Theory.
The basic premise: You have a “spoonful” of energy available for each task you need to get done each day. Every time you do something, you remove a spoon. People with chronic illnesses start each day with fewer, smaller spoons than healthy people, and everyday tasks require more spoons when you have chronic illness than when you don’t. You can run out of spoons — and energy — much more quickly than those around you.