Life with ankylosing spondylitis (AS) can involve a lot of pain and frustration. A strong partnership with your health care team can go a long way toward helping you feel your best. That takes clear communication and the ability to stand up for yourself. Here are some steps you can take to get control of your AS care.
Do Your Homework
Evidence suggests you may feel better and go to the doctor less often if you actively take part in your health care. A good way to start is by learning everything you can about your condition.
You may feel more confident talking to your doctor if you do your own research into how the disease may progress and what the treatment options are. Some places to get information include:
- National Institutes of Health. The different institutes have websites with detailed information about hundreds of medical conditions, including the latest research. Find out about ankylosing spondylitis at the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
- Arthritis Foundation. This nonprofit research and advocacy organization also has information on different kinds of arthritis, including ankylosing spondylitis, at arthritis.org.
- Spondylitis Association of America. In addition to patient information, you can find ways to get support and connect with other people with the disease at spondylitis.org.
Your time with your doctor is limited. You’ll get the most out of your visits if you get organized.
- Make a list of your symptoms, including when they started and how serious they are. Take note of any changes since your last appointment.
- Bring a record of all medicines and supplements you take, along with the doses. If it’s easiest, just carry your pill bottles with you.
- Write down your questions. Put them in order of how important they are to you, in case you aren’t able to get to everything.
- Take notes on what your doctor tells you so you don’t forget anything.
- Think about bringing a family member or trusted friend to be a second set of ears.
After you get home, go back over your notes. If there’s anything you don’t understand, look it up, or follow up with an email or phone call to your doctor’s office.
Understand Your Options
Ankylosing spondylitis can be treated in different ways, depending on your symptoms and how the disease has progressed. You and your doctor should work together to find the best strategy for you.
- Ask which treatment they recommend and why, and whether there are other options.
- Find out when you should expect to see results, and what to do if you don’t. And find out if the treatment will have side effects.
- It may take a team to get you the best care. Ask whether you should see a specialist like a rheumatologist (a doctor who specializes in conditions with inflammation or pain in muscles and joints) or a physical therapist.
- Find out what else you can do to help yourself feel better. Ask about specific problems you may have, like getting comfortable at night or loosening up in the morning. Would an assistive device, like a brace or a walker, help? Should you avoid any activities?
Learn What’s Next
Ankylosing spondylitis is a progressive disease, with symptoms that tend to get worse over time. It can also affect more than just your spine. Ask your doctor what you can expect:
- How are my symptoms likely to change as time goes on?
- How often should we reevaluate my treatment?
- What other health problems am I at risk for?
- What symptoms mean something serious is happening that needs to be dealt with right away?
People with a certain gene type are more likely to get AS. You may want to find out if other family members are at risk and if genetic testing might be helpful.
Don’t Be Shy
Maybe you grew up with a healthy respect, or even an awe, for doctors. And it can be hard to feel like an equal when you’re sitting on an exam table in a paper gown.
But it’s important that you be able to advocate for yourself and get what you need from your health care provider.
- Be persistent. If you don’t understand something, ask your doctor to repeat it or say it in simpler terms. It can help to repeat back what they tell you to be sure you’re clear.
- Be assertive. If you think your doctor hasn’t heard you, or isn’t addressing your concerns, speak up. Don’t hesitate to get a second opinion.
- Be honest. Don’t hold back information about your symptoms or lifestyle because you’re embarrassed. It could be crucial to getting you the right care. And you can be sure your doctor has heard it all before!
Acknowledge Your Feelings
It’s not unusual to struggle emotionally when you have a painful, lifelong condition. You may feel overwhelmed or even depressed.
Your mental health is part of your overall care. Tell your doctor how you’re doing and ask for help. They may be able to offer you ways to deal with your feelings or medications that can help. They can also refer you to a therapist or point you to other sources of support.
Know Your Rights
Most doctors agree to follow certain principles when they deal with patients, such as treating you with courtesy, thoroughly explaining things to you, and respecting your decisions about your own care.
They’re also required by law to keep your information private and to give you access to your medical records.
Your state or your health care facility may spell out other rights.
Photo Credit: Morsa Images / Getty Images
National Institute of Arthritis and Musculoskeletal and Skin Diseases: “Ankylosing Spondylitis.”
NIH News in Health: “Talking With Your Doctor: Make the Most of Your Appointment.”
Arthritis Foundation: “Axial Spondyloarthritis,” “Questions to Ask Your Doctor: Axial Spondyloarthritis.”
Spondylosis Association of America: “Overview of Ankylosing Spondylitis.”
Mayo Clinic: “Ankylosing spondylitis.”
National Institute on Aging: “How to Prepare for a Doctor's Appointment.”
Cleveland Clinic: “Ankylosing Spondylitis (AS).”
Johns Hopkins Medicine: “Don’t Be Shy: 4 Tips for Talking to Your Doctor.”
American Medical Association: “Patient Rights.”
StatPearls: “Patient Rights And Ethics.”
U.S. Department of Health and Human Services: “What are my health care rights and responsibilities?”