A diagnosis of inflammatory arthritis — like rheumatoid arthritis (RA), ankylosing spondylitis (AS), or psoriatic arthritis (PsA) — can be shocking. So shocking, in fact, that you may be in a daze for a day, a week, a month, or even more after you first get diagnosed with arthritis. When the fog clears, there is a lot of disheartening information you must face — even though you’d rather ignore it, hoping and praying it’s not real or will magically disappear.
I know I felt this way when I was first diagnosed with rheumatoid arthritis more than 10 years ago. Over that decade, I’ve had a lot of time to think and reflect about how arthritis has changed my life. I’ve had countless conversations on the same topic with other patients in real life and on social media sites.
What I’ve realized is that having a chronic illness like arthritis means accepting some hard truths about reality while developing an outlook and resilience that lets you filter for the good news.
Unfortunately, your arthritis is not going away, with the best possible outcome being remission. (A 2017 review of rheumatoid arthritis studies found that rates of remission ranged from 5 percent to 45 percent, so that’s pretty broad and unhelpful.)
This is why these hard truths are important to tackle head-on. The quicker you face your fears and the facts, as painful as that may be, the better equipped you’ll be to deal and stay healthier.
Plus, the more you know, the more you’ll realize that all hope it not lost — and the more at peace you’ll be. Promise.
Hard Truth #1: There Is No Cure for Arthritis
Victoria isn’t even 20 yet, so when she was diagnosed with psoriatic arthritis and found out she’d be dealing with it for the rest of her life, she couldn’t believe it. “There is no knowledge on what causes this disease,” she worries. “It’s never going away, it’s a true life sentence,” adds PsA patient Mandy. “’Til death do us part.”
This is the first big shock, confirms rheumatologist and CreakyJoints medical advisor Vinicius Domingues, MD. “It’s really a slap in the face,” admits. “We don’t have a magic wand to fix it.”
In addition to the physical toll of inflammatory arthritis, the psychological toll weighs heavily and is just as valid, confirms Katie Willard Virant, LCSW, a psychotherapist in St. Louis, Missouri who treats many patients with chronic illness and is the author of the Psychology Today blog Chronically Me: The Emotional Landscape of Chronic Illness. “It’s very difficult for people to truly accept this [disease] is not going away. It lasts forever and our lives are going to be impacted forever.” As a Crohn’s disease patient herself, Willard Virant knows all about this from personal experience.
Reason to remain hopeful: The treatment options for RA and other types of inflammatory arthritis have changed dramatically — practically exponentially — over the last 30 years, with the FDA approval of many new, highly effective drugs (and more currently being studied and in development).
My grandmother had RA and I vividly remember her deformed hands and feet when I was a kid. Back then, she didn’t have access to methotrexate or any biologics. When she flared she got “gold shots,” made from sodium aurothiomalate, which literally contained gold and had a garden variety of nasty side effects. Doctors don’t offer gold shots anymore. If she were still alive today and able to take Remicade like I do, no doubt she would have had a better quality of life.
I personally feel hopeful because researchers refuse to give up on us. They’re studying new pathways that cause inflammation and molecules that can target them (aka, new medications). Not to mention, there are plenty of studies underway to better understand what causes inflammatory arthritis in the first place so we can find at-risk people and prevent them from getting arthritis or treat it in its earliest stages.
You can read more about the latest innovations in arthritis research in the CreakyJoints coverage of medical meetings where new findings are presented and shared with doctors, such as those from the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR).
Hard Truth #2: You’ll Be on Arthritis Medication for Life
It’s literally a hard pill to swallow that most likely, for the rest of your life, you’ll have to swallow pills or infuse or inject yourself — or both — especially with the potential for “scary side effects” like hair loss, lymphoma, infection, tuberculosis, and liver damage, laments PsA patient Mindy.
But medication is essential to prevent the progression of disease and joint damage, which, left untreated, could be lead to significant disability as well as other comorbidities like heart disease and lung disease.
“Honestly, I hate [that I need medication],” says Sarah, who also has psoriatic arthritis. “But I need it.”
“You’re damned if you do, damned if you don’t,” adds Sandy.
More damned if you don’t. Some of the older biologic medications have been on the market for more than 20 years, and the studies showing their effectiveness go back almost 30 years.
“These medications do increase your risk for catching infections and there is a signal for [an increased risk of] lymphoma,” Dr. Domingues explains. “But we still believe that the benefits of these therapies really outweigh the risks. The medications are typically safe if well monitored.”
What’s more, there are many different treatment options for inflammatory arthritis today, each with slightly different side effect profiles, so you and your doctor can work together — in a process called shared decision-making — to figure out what medication option is best for you, given your disease, medical history, and personal preferences.
Reason to remain hopeful: If you’re anxious about using injections and infusions to treat your arthritis, there’s an encouraging next generation of drugs to treat RA (and eventually, likely PsA, AS, and others) called JAK inhibitors, which are oral medications that target specific immune system pathways to reduce inflammation.
The first approved JAK was tofacitinib (Xeljanz), two others — baricitinib (Olumiant) and upadacitinib (Rinvoq) recently came to market, and more are forthcoming. “Their efficacy is good and more data is coming that they are equal to or even sometimes better than traditional medications,” says Dr. Domingues, who notes that having more options of targeted therapies will make things easier for patients, especially if a given medication starts to become ineffective for them.
Hard Truth #3: Damage May Have Already Been Done
There’s no easy way to say this, but people who had delays in getting diagnosed or on the right treatment may have permanent joint damage that cannot be reversed. Marie, who has ankylosing spondylitis, is devastated “knowing that I can never have any surgery to fix or help my back.”
When joints and cartilage are destroyed, sadly, Dr. Domingues says, the medical profession is still stymied. “We don’t know how to make cartilage. Patients who were untreated or sub-treated, who now have this damage, we can’t do much about that.”
Reason to remain hopeful: Dr. Domingues notes that medications are being studied right now to help repair damaged joints and cartilage. “So hopefully, we’ll have good information in the next three to five years.”
Until then, early diagnosis and aggressive treatment is essential to prevent more damage from occurring. Do not delay making an appointment with your rheumatologist when you feel a new flare.
“What we can do is prevent further issues and damage,” says Dr. Domingues. “And we’re going to do that by taking our medications consistently. I tell patients, ‘Listen, we cannot go back in time, but we can definitely alter the future.’”
Hard Truth #4: Will I End Up in a Wheelchair — or Worse?
Despite ongoing treatment, 75 percent of RA patients still report symptoms that lessen their quality of life, according to a new study published in the journal Rheumatology and Therapy with data from the ArthritisPower research registry, which is part of CreakyJoints and the Global Healthy Living Foundation.
And anyone who has googled RA or other forms of inflammatory arthritis has seen data about shorter life spans because of the risk of comorbidities and other potentially life-threatening issues. “It becomes an easy habit to dwell on the negative when things pile up, especially those out of your control,” says Hayley, who has AS.
For RA patient Heather, learning to accept that this disease can progress so fast and take over her life is the hardest truth she’s faced. For Wayne, who is 46 and has AS, it’s the actual damage that has already been done. “I’m not vain or into myself that much,” he says, “but it still shocks me when I see my reflection in a shop window. I would like to not be shocked or embarrassed about my stature.”
For others, the unpredictability and the unknown future is the most terrifying aspect of the disease. “I’m a planner,” says Danielle, who has psoriatic arthritis, “and it’s impossible to plan my future and execute the plan when I have absolutely no idea how I’m going to feel next week, let alone one, three, or five years from now.”
Reason to remain hopeful: Dr. Domingues insists that the data about shorter life spans are outdated. Indeed, a 2018 study by Swedish researchers found that “overall mortality rates among people with RA have decreased in recent years,” perhaps partially due to improved therapies and earlier and more aggressive treatment.
“In the past 25 years, we completely revolutionized the treatment of many of these diseases,” Dr. Domingues says. “In the past, people could be completely crippled and in wheelchairs with very limited function. Nowadays, if you take your medications, you’re likely to have a good quality of life.”
In fact, he doesn’t even talk to his patients about lifespan. “I don’t even bring it up. My priority is to make sure that in five, 10, 20 years from now, you’re actually functional.”
Psoriatic arthritis patient Chase is a runner, who always registers early for races because the early prices are best. “I can’t predict a flare several months in advance,” he says, “so at some races I’m crawling. I won’t miss one though, because I’m too freaking stubborn.”
That’s the spirit.
Hard Truth #5: You’ll Lose Some Independence
From having to ask someone to open a jar or for help climbing out of the bathtub to relying on a loved one for income or childcare, these diseases deliver a huge blow to our self-esteem by causing us to feel so needy, helpless, and incapable. Lillian, for one, feels like a huge burden since she was diagnosed with RA. “It’s so hard having to ask for help and having to wait and sometimes even being forgotten.”
“I’m slowly losing my independence,” confirms Amelia, who also has RA. “I don’t know what I’d do without my husband. I can barely grocery shop. And I have two kids to care for, too.”
Pennie, diagnosed with PsA, adds that it was the hardest truth for her the day she realized and had to accept that she couldn’t do a lot of things herself, and needed help daily with cleaning and cooking. For AS patient Davida, it was the inability to do the one thing that made her feel so free and alive: “I had to give up riding my motorcycle, that was a big sign of independence for me. I really miss her — myself — and the bike!”
Reason to remain hopeful: Independence is still possible, Willard Virant notes — you just have to get creative about it. “Think of the ways it’s still possible. Perhaps you may physically need help with care, but you still can have an independence of mind, of spirit. What are those moments where you feel that and how do you build on that? What is the reality like now, what are the things I can’t do? What are the things that I can do?”
Read this article about peoples’ best days since being diagnosed with arthritis for some inspiration and a change in perspective.
Hard Truth #6: Your Relationships May Change
There’s no question some human beings are incapable of dealing with others’ illness: They bolt or ghost when the going gets tough. You find out the hard way exactly whom your true friends are and who is going to abandon you in your greatest time of need.
“I find that the majority of people want sunshine, rainbows, and lollipops,” says Terry, who has PsA. “They don’t want to really hear about pain, limited mobility, and fatigue.”
Kelli stopped trying when she was slowed down by RA. “It’s very difficult to make plans with friends because who knows if it’s a good day or a bad day. I’ve broken plans so many times,” she admits.
For committed or married couples, that “in sickness and health” vow can be put to the test daily. Misty, who has PsA, is concerned that she’s “no longer the strong, independent woman my husband married,” and constantly wonders about “how easy it could be for him to walk away from me.”
Kim harkens back to the good old days when PsA didn’t affect her marriage. “My husband sees me differently now,” she laments. “He just seems to be between worried that I’m ill and angry at the illness. I don’t think he sees me as overly capable anymore — but I still am.”
Reason to remain hopeful: If you’ve got good eggs in your life, hold on tight. But not too tight! Lynnie may not be able to hold her sweet husband’s hands anymore when they go out on dates — “it just hurts too much” — but he’s still so sensitive to how PsA makes her hurt. “I am endlessly grateful, but boy do I ever miss his hand wrapped snugly around mine.”
As painful as it may be, weeding out the unsupportive people in your life is healthy and will be better in the long run, says Willard Virant.
“I let go of a relationship a few years back because I was told, ‘What happens when you get worse? I can’t help you,’” says AS patient Chad. “That was a lonely day.” But he stood his ground, dumped his partner, and now proudly asserts, “I haven’t looked back since. I cannot apologize for AS.”
Hard Truth #7: Pregnancy May Be Even Harder
Nikki, who was diagnosed with RA at 19, says “the hardest part for me was knowing that I’ll never be able to have my own kids. Between all the medication I’m on and the risks. And all I’ve ever wanted to do is be a mother. I’m a nanny so that definitely helps my soul heal about having kids.”
A lot of people diagnosed with RA, like Nikki, are *mistakenly* under the impression that they cannot have children because of their inflammatory arthritis.
That’s not true for everyone — rheumatologists and ob-gyns treat patients every single day who are managing rheumatologic diseases while pregnant, though there are adjustments and decisions that you’ll need to make with your health care team, depending on your medical history, current medications, and more.
Reason to remain hopeful: There are some medications that you absolutely cannot take while pregnant or trying to conceive, like methotrexate. But certain other DMARDs and biologic drugs are safe to use during pregnancy — and doing so may be best for both expectant moms and their babies.
“The more active your rheumatoid arthritis is during pregnancy, particularly in the first half of pregnancy, the earlier you will deliver,” Megan E.B. Clowse, MD, a rheumatologist at Duke University School of Medicine who studies family planning in rheumatic disease, told CreakyJoints. “And we know that babies do best if they’re delivered right around their due date, or a couple weeks before their due date.”
A couple of different studies (like this one and this one) presented at the 2019 American College of Rheumatology Annual Meeting found that women who remained on their biologic drugs during pregnancy had a reduced risk of disease flares and a reduced reliance on taking steroid medications during pregnancy. (The latest thinking is that taking steroids is more risky than keeping a pregnant woman on a pregnancy-safe DMARD or biologic, according to Dr. Clowse.) What’s more, data from the same meeting showed that most babies who were exposed to biologic medications in utero did not experience serious infections during their first year of life.
“Keeping your disease under good control is possible with medicines that are compatible with pregnancy, and key to having a healthy baby,” says Dr. Clowse.
If you’re a woman of childbearing age, diagnosed with inflammatory arthritis, and concerned about what that will mean for getting pregnant and having a healthy pregnancy, the most important thing is to bring it up with your rheumatologist right away. They need to know your timeline and planning so you can make treatment decisions accordingly.
Hard Truth #8: The ‘Old’ You Is Gone
Valerie doesn’t wear pretty shoes anymore.
Catzen can’t run with his beloved Pomerian puppies.
John’s time as the leader of the Lion’s Club is done.
Carol went from riding in an ambulance as an EMT to sitting at a desk as a sales assistant.
Pennie let go of her beloved gardening.
Maria can’t dance.
Amy needs lube for her eyes, lube for her mouth, lube for her joints, lube for, “well, you get the idea,” she jokes.
Deepali says her personality changed from happy and cheerful to quick to anger.
Lisa gave up guitar and gets called “Grandma” by the unkind when she walks with her cane. She’s 38. “I look totally fine, but I feel broken inside.”
Since we developed these diseases, we’ve all made great sacrifices in order to feel less pain. “Can’t” has become a huge part of our vocabulary, even if we’re optimists. We’ve given up some of the things we love — the things that made us who we are, kicking and screaming. And it’s changed us profoundly.
“My hardest truth was having my actual personality change against my will,” says Kristen, who has PsA. “I used to be a spontaneous and a free spirit. I am now very far from either of those things.”
“My entire life — poof!” adds Karrie. “I am living a 100 percent completely different life now.”
Willard Virant thinks it’s essential for arthritis patients to take the time and emotional space to grieve the person they once were. It’s painful and it hurts, but it’s not going to kill us.
“I really encourage my clients not to think of these changes as failures, but just a reminder of how powerful that wish is to not have this illness,” says Willard Virant. Really tap into that longing and that wish that things were the way they used to be.”
Jonathan’s hardest truth since having AS was letting go of having to “keep trying, doing, completing. I accept I can have limited physical functioning when my body permits and not at my free will. It takes years getting to grips with it, I suppose. But it cuts all the nonsense and pretense out. You can’t kid yourself or anyone else. It’s either do or not do as health allows.”
Reason to remain hopeful: Willard Virant believes grieving our old selves is a two-part process: First we mourn; then we build something new. “We make space for things that bring pleasure. What makes you happy, what makes you feel most yourself? It can be different things for different people.” It’s all about the pivot. For example, if you used to love bird watching but can’t hike anymore, maybe you can start a podcast or blog about birds.
Ron concedes that his hardest truth since being diagnosed with RA is that he’s not who he used to be. At 55, he feels like the last 23 years were “stolen” from him. “The sad, maddening, lonely loss of a perfectly good addition to society.” Still, he says, “I push myself every day, to do something.”
Bottom line: Don’t stop living. You’re not dead yet, you’re just different. After 20-plus years in the military, Jeff’s AS prevents him from doing 80 percent of what he used to do. But he insists, “Never give up and never give in!”
Be a More Proactive Patient with ArthritisPower
Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.