It’s not always easy to tell others you have a chronic condition, but when you have an invisible chronic condition like ankylosing spondylitis (AS), the conversation can become even more complicated.
AS can be difficult for others to understand. The condition is rare and less well known than other types of arthritis; yet estimates show that spondyloarthritis — which is the family of arthritic conditions that includes AS — affects up to 1 percent of people in the United States. This can make it hard to talk about your condition with those closest to you, such as your friends, loved ones, and new partners, and even your healthcare team.
Still, there will be times when you’ll have to offer an explanation to someone else. For example, when an unexpected flare hits, you may suddenly have to change your plans or adjust your day to minimize the pain. In this case, it’s important to take charge by openly explaining to those around you what the condition is, asking for what you need, and letting others know how they can support you.
Communicating With Your Healthcare Team
It’s important to have a good relationship with your doctors, but opening up to them can be easier said than done. In a survey published in November 2021 in ACR Open Rheumatology, fewer than two-thirds of participants who were dissatisfied with their spondyloarthritis treatment brought it up at their most recent doctor visit.
When you’re talking to your doctor, try not to downplay any pain or discomfort you’re feeling. It may be easy to write off a strange pain or new ache, but it might not go away or get better without proper attention and acknowledgment. Don’t assume you’re exaggerating your pain or bothering your practitioner; your doctor needs to know this information to treat you.
“Often people don’t actually appreciate the amount of stiffness they have,” says Maureen Dubreuil, MD, an assistant professor of medicine at Boston University School of Medicine and rheumatologist specializing in spondyloarthritis. “It’s often only in exams we discover that their back or hips aren’t bending as they should be.”
Advocating for your needs is crucial to better pain management, particularly because appointments with your rheumatologist can be weeks or even months apart. One strategy for optimizing your conversation with your healthcare team is to keep a symptom journal to make the most of time between visits, according to Dr. Dubreuil.
“Keep a journal to put together patterns as far as how often you’re having pain that prevents you from doing something important to you, such as sleep or your social life,” says Dubreuil. “It’s helpful for your healthcare provider to understand how impactful or disruptive your symptoms are to determine if the treatment needs to change.”
Tracking your symptoms in a journey can help your doctor not only adjust your treatment, but also spot potential flare triggers. If you’re able to document daily activities — sleep patterns, amount of exercise, and eating habits — it can be easier to see what in particular might be contributing to flares or painful disruptions that may escape you when you walk into the doctor’s office or sit down for a telehealth appointment.
You may also find it helpful to write down questions in advance or bring a loved one as an advocate if you have difficulty explaining your condition to your doctor.
“It’s a whole puzzle we’re trying to put together as a team of patient and clinician to figure out if inflammation is still happening, or if there’s damage over time that we need to deal with, or if there are some other contributing factors that are making the pain a major problem,” Dubreuil adds.
Sharing Your Needs With Romantic Partners
Ankylosing spondylitis has a typical onset age of between 17 to 45, according to the Spondylitis Association of America (SAA), which can make dating even trickier than it already is.
Since AS is unpredictable, often flaring up out of the blue, it may impact your ability to stick to plans. Sometimes, you may need extra downtime or some physical assistance. That’s why keeping an open dialogue with your partner comes in handy. The troublesome mix of misplaced guilt around flares — the causes of which are largely out of your control — and fear of disappointing your partner and loved ones is difficult to navigate.
“It’s important first for people to give themselves a little forgiveness. These things aren’t because you did something, but because inflammation happens unpredictably,” says Dubreuil.
While it may be embarrassing at times to explain that you may need to stay home and stretch instead of going out, or that a common activity may be physically uncomfortable for you, it’s important to voice those concerns. Doing so helps you build and maintain trust with others, including people you barely know and those you’ve known for years.
Dubreuil recommends finding creative ways to modify movements, activities, and actions to reduce strain on your back and joints. When it comes to intimacy in a relationship, it’s as important as ever to be communicative: “I encourage people to be open with their romantic partner about what feels good and what doesn’t feel good,” she says.
A partner may be able to help in other ways as well. “A partner can listen and help with activities and encourage things that may help like gentle stretching or going for a walk together. They can also be a reminder to stick with medications,” says Dubreuil. These moments of intimacy can help form a strong bond that helps to make more difficult conversations that may arise down the line easier and more effective.
Advocating for Yourself in the Workplace
According to the SAA, as many as 1 in 4 people with spondyloarthritis have had to change careers due to the condition. Certain career paths and job requirements can be made more difficult if you have AS, such as having to stand or sit for extended periods without breaks or stretching, working long hours, or performing strenuous physical activities.
First, know that there are ways to make your job more comfortable. For example, if you work in an office, you can request specific desks or chairs that make your set-up more comfortable. “There are certain arrangements [employers’] can make to the height of the monitor and keyboard, as well as the position of the mouse so that people can maintain a pretty upright posture,” says Dubreuil.
You may also want to talk to your boss about your condition. If you need help, you can ask your doctor to approve a disclosure of information to document your case, or ask human resources for help.
“Work with your healthcare provider to determine the career parameters. For some people, it means missing work, for instance, once a month to attend a medical appointment,” says Dubreuil. “Other people who are having more frequent, unpredictable flares may need time off work a couple days per month.”
You might also consider invoking the Family and Medical Leave Act, which allows for unpaid, job-protected leave for specified medical reasons.
If your employer doesn’t seem able to understand your needs or willing to make arrangements to help you succeed, you have legal options to protect your privacy and prevent backlash.