We all respond differently to information about our health. After learning you have spondylitis (also known as axial spondyloarthritis or axSpA), you might be stunned, scared, or even relieved to have answers that explain chronic neck, back, or hip pain. No matter what you’re feeling, you’re not alone. On MySpondylitisTeam, there are thousands of others who have been in your shoes.

You can’t figure out everything about spondylitis at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and making a plan for managing your health can improve mental and emotional well-being.

Create Space for Spondylitis
It’s normal to feel out of control when you first learn you have spondylitis. You may have a pile of pamphlets crowding your kitchen table and a head full of questions that you forget the moment you set foot in a doctor’s office. You can begin to tame the chaos by implementing very simple organizational techniques that will help you create space for this new aspect of your life.

Put Everything in One Place
Storing all of your printed doctor’s visit summaries, pamphlets about spondylitis, and other resources in a designated spot can help create some order and help you find information when you need it. You don’t need a fancy filing system - a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, there is evidence that controlling clutter is associated with better moods.

Remember Your Questions
Keep a list of questions about spondylitis for your healthcare provider in a dedicated notebook or on your smartphone. Jot down your questions as you think of them and bring your list to your appointments so you can remember your questions and write down the answers.

Manage Your Appointments
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing any new doctor’s visits. If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge. You can also ask your doctor’s office about phone call or text message reminders that can help you keep on top of appointments.

Track Your Medications
Using an old-fashioned pill organizer is a great way to keep track of any oral medications that are part of your new regimen. You can use a paper medication tracker or smartphone app to manage a schedule of injected medications.

Reach Out for Support
It can feel overwhelming to reach out after receiving a spondylitis diagnosis, but you don’t have to face your diagnosis alone. Support from loved ones, your medical team, and other people with spondylitis is crucial as you embark on treatment and adjust to your new normal. There are a few basic steps you can take to start building your network of support.

Spondylitis Communities
You may not be ready to talk about your diagnosis with your loved ones right away. You may also not have time or be comfortable joining an in-person support group. That’s ok. Connecting with members on MySpondylitisTeam can be a first step towards finding support. Your community on MySpondylitisTeam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with spondylitis or want to celebrate a victory.

Healthcare Providers
Many hospitals and medical practices offer resources that extend beyond your medical appointments. These may include chaplaincy services, health education classes, patient liaisons or nurse navigators, on-site support groups, and referrals to other services.

Friends and Family
Sharing your spondylitis diagnosis with friends and family can be hard. They may be afraid and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that’s helping with household chores or offering a listening ear.

Learn More About Spondylitis
You might not have heard of axSpA or spondylitis before your diagnosis, but now you probably want to learn more. Your healthcare provider is a great resource for information, but you may also want to do your own research. Remember to be cautious of what you read online, especially if someone is offering a quick fix or selling a cure. You can always reach out to your healthcare provider or patient liaison if you have questions about something you’ve read. Here are a few resources to get you started.

• What Is Spondylitis?
• National Institute of Arthritis and Musculoskeletal and Skin Diseases - Ankylosing Spondylitis
• Spondylitis Association of America

You never have to feel alone when you’re living with spondylitis. Members on MySpondylitisTeam are always available to answer questions and offer encouragement when things get rough.

Here are some conversations from members on MySpondylitisTeam about facing a new diagnosis:

• "Even though I have had the pain, fatigue and depression for years, my recent diagnosis sort of set me back into a realm of denial that this is permanent."
• "I cannot cope with the fact that this diagnosis only gets worse. I am sad, angry and frustrated and I feel like no one understands."
• "I was recently diagnosed with AS. After a few different meds, I am now on a biologic. Hoping this will help me get back to a manageable level of pain."

If you have a pressing question, you can go straight to the Q+A section.
You can also read more about how to get started on MySpondylitisTeam.

For the newly diagnosed, what information are you seeking?
For the spondylitis veterans, what do you wish you knew when you were first diagnosed?
Share in the comments below or directly on MySpondylitisTeam.