Check out Ghosting the Doctor in Ankylosing Spondylitis for more information on this topic.
Ankylosing spondylitis (AS) is a type of inflammatory arthritis that predominantly affects the spine and pelvis. It causes telltale inflammatory back pain that can make it difficult to sleep well and get in the way of daily activities. Research shows that AS can take a big toll on personal relationships and the ability to work. If left untreated, AS can cause permanent joint damage (such as fusion in the spine) and disability in some patients.
Getting diagnosed with AS can be a challenging process that can take years — as many as 14 years from the onset of symptoms and diagnosis, according to one study. People often struggle to find the right health care professional — going to primary care doctors, chiropractors, physical therapists, orthopedists, and pain management specialists before finally seeing a rheumatologist trained to treat AS. They fight hard to get a diagnosis, undergoing various tests and treatments.
“By the time people with AS get to a rheumatologist, they’re often exhausted and their symptoms can be severe,” says rheumatologist Rachel Tate, DO, of Arthritis and Rheumatology Associates of Palm Beach, Florida.
So why would anyone with AS then stop seeing their doctor after getting such a hard-won diagnosis? This “ghosting” phenomenon, officially called “lost to follow-up” in medical terms, may be more common and complex than you realize.
CreakyJoints spoke with rheumatologists and people living with AS to better understand why ghosting occurs and how patients and doctors can work together to address it.
Ghosting in Ankylosing Spondylitis: How Common Is It?
In dating, ghosting means abruptly cutting off all communication with someone without explanation. In health care, ghosting could mean that you stop seeing the doctor or stop seeking treatment.
There is limited data on ghosting in ankylosing spondylitis in the United States. In one 2016 study of 781 rheumatic disease patients in Taiwan, here’s how many were lost to follow-up:
- 35% of ankylosing spondylitis patients (out of 136 people total)
- 24% of rheumatoid arthritis patients (out of 406 people total)
- 26% of lupus patients (out of 174 people total)
- 35% of psoriatic arthritis patients (out of 65 people total)
In a separate study of 514 AS patients from Turkey, 167 (32 percent) were considered lost to follow up, which was defined as non-attendance at the clinic for one or more years.
However, more research is needed to make comparisons about loss to follow-up in different rheumatic conditions. In fact, experts CreakyJoints spoke to agreed that there isn’t good reason to think ghosting is more common in AS compared to other rheumatic conditions.
On the contrary, one reason ghosting may be less of an issue in AS is because symptoms can be so debilitating. “Patients can have crushing back pain; they can’t sleep at night because of it,” says rheumatologist Atul Deodhar, MD, Professor of Medicine, Division of Arthritis and Rheumatic Diseases, School of Medicine at Oregon Health & Science University. It stands to reason that people who are experiencing a lot of pain would be less likely to avoid or delay getting care.
CreakyJoints conducted a survey of our community of people with axial spondyloarthritis (axSpA), which is an umbrella term for ankylosing spondylitis and a related condition called non-radiographic axial spondyloarthritis. Both conditions can cause similar symptoms and disease burden; the difference is that with AS, there is joint damage that is visible on X-rays (radiographs).
Among the 342 survey respondents (who said they had been diagnosed with axSpA by a doctor), almost 24 percent said they had stopped seeing their specialist for a period of time after getting diagnosed.
CreakyJoints member Jed F., who runs the Facebook group Living With Ankylosing Spondylitis, admits to ghosting his doctors a few times along his decades-long journey with AS. “Living with ankylosing spondylitis isn’t easy,” he says. “It’s painful, hard to treat, harder to understand, and incurable.”
Ghosting in AS: Why It Happens
While rheumatologists don’t want patients to ghost them, they do understand why it happens, says Dr. Tate. She explains: “If patients feel we’re not doing enough to control their symptoms. If they think they’re not doing that badly. If they get mixed messages from their family or friends — they hear ‘but you’re young, you’re healthy.’ If they’ve never heard of AS and don’t know what the diagnosis really is — all of this can play a role in ghosting.”
Here is more about the major factors that affect ghosting in AS, based on available research and doctors and patient perspectives.
1. Lack of knowledge about AS or next steps for treatment
A common theme among patients who stopped seeing their doctor was a lack of information and communication between the patient and provider, according to the CreakyJoints survey. Among the reasons respondents said they stopped seeing a specialist (they could select more than one response):
- 10% did not know what the disease was
- 20% were unsure what their diagnosis meant for the future
- 32% were not told the next steps for treatment and care
- 22% said the doctor did not communicate the seriousness of their disease
Awareness is a problem with AS, says rheumatologist Hillary Norton, MD, who herself has AS — she was diagnosed during medical school. “Most people have heard of rheumatoid arthritis or lupus, or they’ve seen someone with hand deformities because of arthritis. AS is not a disease many people have heard about, which means they don’t know how serious it can be or what disease progression can be like.”
2. Wanting to treat AS without medication
“It’s not uncommon to get a diagnosis of a chronic disease and think, ‘I’m going to approach this in a different way,’” says Dr. Norton, who practices in Santa Fe, New Mexico. “We tend to hear about this when people come back a few years later because self-management didn’t work.”
It’s important to talk about medications for ankylosing spondylitis as one part of treatment along with exercise, sleep, nutrition, and other lifestyle changes, says Dr. Norton. This could help some people feel more comfortable starting medication, she notes.
“I think there are some people who see treatment or support groups for ankylosing spondylitis as weaknesses,” says Jed. He first ghosted his doctor after he was diagnosed because at the time (about 25 years ago) treatment options were limited and he figured he could manage by playing sports and staying active. It would take nearly a decade for Jed’s symptoms to catch up with him, causing pain that was so bad it was difficult for him to drive.
“AS is a weird, scary, and hard-to-pronounce disease, but you need to listen to your body and a doctor,” says Jed. “There is nothing wrong with asking for help and seeking treatment.”
3. Improvement in symptoms or a mild disease course
While AS can cause high levels of pain, fatigue, and other symptoms in many people, everyone’s disease activity is unique. Some people may stop seeing the doctor because their symptoms seem under good control. “It’s even easier [to ghost your doctor] if you are doing well and you don’t feel you need help,” says Jed.
In the study about rheumatic disease patients lost to follow-up in Taiwan, the most common reason reported among those with AS was “stopping medication due to minimal symptoms.”
In the Turkish study, people with AS who stopped seeing the doctor were more likely to have lower disease activity scores when first diagnosed and at their most recent visit. “Non-attending AS patients may have a milder disease course,” the authors noted.
You and your rheumatologist should discuss how often follow-up visits are needed for your case of AS.
4. Fear or denial
In the CreakyJoints survey, 15 percent of respondents said being scared about their diagnosis was one reason they stopped seeing the doctor. Another related factor is denial, which Dr. Norton knows all too well.
“For four years, I took NSAIDs [non-steroidal anti-inflammatory drugs] and sulfasalazine [a disease-modifying medication]. Even though my condition was getting worse and I was walking with a limp, I didn’t think I needed to take biologics,” she says. “I thought they were for people who were sicker than me, but I didn’t realize that I was in that group. I refused to believe the illness was getting the best of me.”
5. Issues with the doctor, insurance, or the health care system
Patient-doctor relationships can play a big role in ghosting. Not every rheumatologist is right for every patient, which means you may need to seek a second or even a third opinion. This isn’t always easy depending on where you live and your access to different rheumatology providers.
In the CreakyJoints survey, 15 percent of respondents said they stopped seeing the doctor because the doctor didn’t take their concerns seriously; 22 percent said the doctor didn’t take their symptoms seriously.
Other critically important reasons for ghosting have to do with navigating the health care system in general, including:
- Having access to a doctor
- Being able to travel to the doctor
- Affording doctor visits and medication
- Getting medication approved and covered by insurance
“We can’t ignore socioeconomic factors and patients’ environments,” says Dr. Tate. “If someone doesn’t have health insurance, if they’re younger and don’t have a support system in place — these factors must also be addressed to help patients get and maintain the care they need.”
Regan R. started experiencing symptoms as a tween and endured more than a decade of various doctor visits and tests before finally getting diagnosed with AS during college — only to undergo multiple failed attempts to get insurance coverage for a biologic. “It had taken me 12 years to get that point, and when the treatment was denied, I was just done,” she says. She stopped seeing the doctor for many years, ultimately going to a different rheumatologist and starting treatment after her pain had worsened so much that she was having trouble getting out of bed.
“Financial considerations are a major factor in ghosting,” says AS patient Dawn G., who says she’s had stops and starts with treatment over the years. “It can be embarrassing to have to talk about money. It’s hard to figure out what patient assistance is out there, or who qualifies.” Dawn urges others to bring up these issues with the doctor. Ask about how you can get help affording treatment or getting it covered by insurance. Many rheumatology practices have office staff dedicated to help patients get on therapy and connect them with resources to help.
Ghosting Before an AS Diagnosis
Another issue that patients shared is how ghosting plays a role in the long, drawn-out journey to get an AS diagnosis in the first place. When people feel like their health care providers are misdiagnosing them or not taking their symptoms seriously, it can lead to feelings of hopelessness that may make them more likely to give up on seeking care.
This was the case for Laura P., who learned she had AS years after she was first diagnosed with mixed connective tissue disease. When she started seeing a new rheumatologist, “not only did he seem not interested in my new symptoms, but he also told me that my mixed connective tissue disease was ‘only fibromyalgia,’” says Laura. She ghosted that doctor for two years before seeing a different rheumatologist who confirmed that she had moderate to advanced AS.
“I don’t regret ghosting [that] rheumatologist, but I do regret not trusting myself more and pushing for a second opinion,” she says. “If I didn’t wait those two years, maybe the progression of the AS may have have slowed.”
Similarly, Michael W. stopped seeing a rheumatologist because he says they insisted his back pain was mechanical, not inflammatory — and kept recommending physical therapy even as his pain continued to worsen. “I ghosted the rheumatologist I went to for help because she didn’t diagnose me!”
The Risk of Untreated AS
Once you’re diagnosed with AS, your doctor should discuss treatment options to help manage symptoms. There are different kinds of medications to help with AS pain and other symptoms.
Medication options include two general categories:
- Non-steroidal anti-inflammatory drugs (NSAIDs): These are oral medications (pills) that include ibuprofen (Advil), aspirin, naproxen (Aleve) and prescription versions. They can help relieve pain and stiffness.
- Biologics: These are infused or injectable medications that target parts of the immune system that cause inflammation in AS. They are prescribed if NSAIDs aren’t doing enough to manage symptoms.
Not treating AS can lead to worsening symptoms, which can take a big toll on your quality of life and your ability to do daily activities, spend time with loved ones, and work. It can result in permanent joint damage and disability in some patients.
In the CreakyJoints survey, respondents who said they stopped seeing the doctor reported that this impacted their health:
- 32% said their symptoms worsened
- 36% said their mobility worsened
- 14% said they’ve become unable to do everyday tasks without help
- 73% said they have pain in areas other than the spine
- 64% said they have inflammation in areas other than the spine
Many people with AS need to see the doctor regularly to monitor symptoms and disease activity. This could be as often as every few months, but how often you should see the doctor depends on such factors as your medications, symptoms, and comorbidities.
How to Prevent Ghosting and Get Better Care
AS can affect each person differently. Everyone’s case, personal situation, and medical history is unique. This means that medication, lifestyle changes, and ongoing medical care should be tailored for you. Some people with AS may start a biologic right away and see the doctor every few months; others may take an over-the-counter pain reliever and see the doctor as needed. And since AS is chronic and can be progressive, your treatment plan may change over time.
- If you have an AS diagnosis, you and your doctor work together to discuss the ideal treatment plan and follow-up care for you.
- If you don’t have an AS diagnosis yet (but suspect you might have it), don’t give up on finding a doctor to get to the bottom of your symptoms.
Here are some insights from doctors and patients about how to improve communication to help prevent ghosting.
Find a doctor you connect with
If you feel like your doctor isn’t listening, isn’t available, or isn’t understanding, keep trying to find one who is. “You need to find a provider who you respect and who respects you back,” says Dr. Tate. Looking back on her experience, Laura says, “I wish I hadn’t been afraid of hurting [the doctor’s] feelings and getting second opinions.”
It may take time to find a different doctor or months to get an appointment, as was the case for Michael. But even though many people expressed frustration about this process, they’re relieved they stuck with it. “There are so many doctors who dismiss you, are short with you, or don’t want to answer your questions,” Michael says. “The doctor who takes a little extra time, listens, and seems like they genuinely care makes all the difference in the world.”
“Don’t not go to a doctor,” says Regan. “If you don’t like your current doctor, work to find a new one — but keep seeing the one you have.”
Understand your diagnosis and next steps
Learning you have AS can be overwhelming, especially if you’re unfamiliar with the disease. Do your own research and talk with other patients.
“You need to study the disease. And I’m not talking about just researching it on the internet. Join groups so you can talk to others who really understand,” says Michael. “Very few doctors have these conditions. And while they may be great doctors and sympathetic, they still don’t know what it’s like. Get your mind around it, and then find a way to manage it that works for you because the same thing that works for one doesn’t work for everybody else. We all have our own journeys.”
“Find someone to talk to who has been there who can just sit there and listen to you,” says Regan. “They may not give you any medical advice, but they can support you and be a sounding board. And that goes a heck of a long way.”
Ask the right questions
It is also important to have a thorough conversation with your doctor. Make sure they clearly explain to you what AS is, your outlook, and the next steps for treatment and follow-up.
This printable guide You’ve Got Ankylosing Spondylitis: Now What? provides important questions to ask to make sure you feel informed and ready to manage your AS.
“I like to go over what I call an ‘expectation checklist’ with my AS patients,” says Dr. Tate. “We discuss what we’re going to do, a timeline of what to expect for feeling better, and how to manage other issues that are affecting quality of life, like pain that is causing trouble sleeping.”
It’s also very important to make sure you know the following:
- How to get in touch with the doctor or office staff
- Who to contact in the office with questions about medication or insurance, especially if you are starting a biologic
- When to come back for your next appointment
- Whether you need additional tests or to see other specialists
Express any concerns about treatment
If you have questions about the treatment your doctor is suggesting, speak up so you can discuss your concerns together. “You have to meet the patient where they are,” says Dr. Norton. If she has patients who are hesitant to start taking medication, she’ll tell them, “I hope you’ll still come see me so we can monitor how you’re doing and maximize your quality of life.”
“Starting a biologic can be a big decision, and it’s understandable to have questions about how they work and their safety. But when patients ask their doctor, sometimes the response can feel like pressure rather than a conversation meant to inform,” says Dawn.
It may take time, including multiple discussions between you and your doctor, to feel comfortable deciding on a treatment plan. Ask your doctor what to expect in terms of when your treatment should start working, and how it should improve your quality of life and function — and what to do if you suspect it’s not helping.
“It’s normal to get frustrated if a treatment is not working for you,” says Jed. “Remember that everyone has different experiences and what worked for one person might not work for another.”
Listen to your body
Finally, don’t be afraid to return to a doctor you’ve ghosted or find a new doctor even if years have passed since you last sought care. It’s not too late.
In the CreakyJoints survey, of the respondents (24 percent) who said they had stopped seeing their doctor after their diagnosis, nearly 75 percent said they had started seeing a specialist again.
“I ghosted the doctor for too long because I thought I had everything under control,” says Jed. “Even when my body ached and things were getting worse, I ignored my body. Big mistake. If your body is telling you it needs help — even in the slightest way, listen to it.”
“It’s important to identify your personal barriers to care,” says Dawn. For her, “this means talking with somebody I trust about my concerns and how to process them. The main thing is to keep moving forward and protecting my health.”
This article is part of Ghosting the Doctor in Ankylosing Spondylitis and was made possible with support from AbbVie.
Deodhar A, et al. Ankylosing spondylitis diagnosis in US patients with back pain: identifying providers involved and factors associated with rheumatology referral delay. Clinical Rheumatology. July 2016. doi: https://doi.org/10.1007/s10067-016-3231-z.
Deodhar A, et al. Frequency of Axial Spondyloarthritis Diagnosis Among Patients Seen by US Rheumatologists for Evaluation of Chronic Back Pain. Arthritis & Rheumatology. July 2016. doi: https://doi.org/10.1002/art.39612.
CreakyJoints Survey: Experiences Seeking Care for Ankylosing Spondylitis. October 4, 2021.
Interview with Atul Deodhar, MD, Professor of Medicine, Division of Arthritis and Rheumatic Diseases, School of Medicine at Oregon Health & Science University
Interview with Hillary Norton, MD, rheumatologist in Santa Fe, New Mexico
Interview Rachel Tate, DO, rheumatologist with Arthritis and Rheumatology Associates of Palm Beach, Florida
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