The memory of what it’s like to have an RA flare-up can stay with you even when your symptoms have subsided.
I can’t recall when I last felt the pain, stiffness, and debilitating immobility of rheumatoid arthritis. I don’t remember the exact date I was told I was officially arthritis-free or when I was given the go-ahead to stop taking my medications.
But I do know that after more than 2 years in remission, I still haven’t been able to shake the fear of it coming back.
My pain markers are at zero and I haven’t relied on medication in over 2 years. It’s been so long since I’ve had pain in my joints that I forget what it even felt like, and still, I worry about my symptoms returning on a regular basis.
It only takes a twinge in my hip, a day of unusual fatigue, or a few weeks of feeling like I haven’t been looking after myself carefully enough, for the anxiety of a flare to kick in.
Despite years of being symptom-free, the fear of my RA coming back never goes away.
Yuko Nippoda, psychotherapist and spokesperson for the UK Council for Psychotherapy (UKCP), says it’s common for people with rheumatoid arthritis and other chronic illnesses to feel fearful of recurrence.
“When you have a chronic illness, it can be traumatic to experience symptoms such as pain, fatigue, swelling, and so on. And, if the condition affects your freedom, you can end up feeling useless and worthless,” explains Nippoda.
She believes the memory of these feelings can stay with us long after our symptoms go away. She notes, “When people are in remission, they might expect to feel joy at overcoming the illness. However, their body and mind still remember the experience of the difficult time.”
“The memory of the trauma they experienced during their illness can cause anxiety and instill fear of the illness returning.”
For me, recurrence anxiety is similar to the feeling of not being in control. While I know that I can take steps to try to lead a healthy life, ultimately whether my rheumatoid arthritis recurs is mostly beyond my control.
As someone who remembers how debilitating it was to need assistance opening a bottle, the prospect of having a flare is a pretty scary thought.
“Feelings of anxiety and fear that your chronic illness may return come from deep within you and can hit you suddenly even when you think you may have forgotten about it in daily life,” says Nippoda. “You might have anxiety attacks or feel daunted or depressed.”
Left unchecked, it’s possible these feelings can intensify. Nippoda says it’s not uncommon for people in remission to experience self-blame, lose confidence in themselves, and develop anxiety about having other illnesses.
Fortunately, if you’re feeling fearful about a return of your condition, there are ways you can manage these emotions.
Experiencing any sort of anxiety can be scary. Recognizing that you went through a tough time and are having a normal reaction to it may help.
“Acknowledging that it’s common to feel anxiety and fear and accepting that it is OK to feel that way can help you to feel grounded,” Nippoda suggests.
Unless you’ve lived with a chronic condition yourself, it can be difficult to fully grasp just how challenging it can be to manage it. Finding others who understand how you feel can be so helpful.
“There are organizations and charities for most chronic illnesses who can provide you with information. Speaking to or meeting others who have been through the same experience can help you feel you are not alone in this,” says Nippoda.
“If you are worried about your illness returning, it may be useful to ask your doctor about what percentage of people have a recurrence. Having more accurate medical knowledge might reassure you,” Nippoda suggests.
I am fortunate to have a brilliant rheumatologist who helps put my mind at ease. He often reminds me how many treatment options are now available for RA and reassures me that there are many ways to manage my condition.
“It’s useful to know what you can do to support yourself when you have anxiety attacks or experience fear,” says Nippoda.
She recommends writing down some positive affirmations that can be used to ground you when you’re feeling anxious. When health anxiety gets the better of me, I’ve found that repeating the affirmation, “I am choosing to live in the present moment” is particularly beneficial.
Nippoda also believes that intentionally creating moments of calm throughout your day can be helpful. She recommends relaxation exercises such as breathing techniques and yoga.
“Preparing some ways to support yourself in advance is very important,” she explains.
When uncomfortable feelings arise, it can often be tempting to try to ignore or suppress them. Where recurrence anxiety is concerned, I’ve found addressing and acknowledging my worries gives them less power.
For me, this means keeping a worry journal, a place where I write honestly about all of my fears.
Putting my worries into words often helps me feel calmer and gives me a healthy dose of perspective when the fear of recurrence rears its head.
If your feelings are so overwhelming that you feel you are unable to manage them on your own, get the support of a mental health professional.
“It’s not uncommon to feel anxiety and fear about your illness returning, and there is nothing wrong with you for feeling this way. However, if you are suffering from acute anxiety or fear, you might want to seek professional help from a psychotherapist or counselor,” Nippoda explains.
If you’re in remission, the memory of what it’s like to have an RA flare-up can stay with you long after the symptoms have gone away. But the fear of recurrence doesn’t have to take over your life.
There are steps you can take to manage it, from getting your worries out on paper and connecting with people who understand, to seeking support from a mental health professional or your rheumatology doctor.
Fact checked on January 26, 2022
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