Ask the Expert: Mental Self-Care While Living with Ankylosing Spondylitis

Mental well-being is closely tied to physical well-being. In life, we learn a lot about how to take care of our physical health and steps to prevent disease, such as eating a nutritious diet, engaging in physical activity, and going to regular health checkups.

We don’t often get a lot of advice about how to care for our mental health and well-being. In fact, many people experience work or social settings that might be really unhealthy for mental and emotional well-being. Being part of a fast-paced culture that values academic and professional success can sometimes lead people to sacrifice their mental health without even realizing it.

For people with chronic health conditions such as AS, the back and forth between mental and physical well-being is even stronger. Stress can worsen the physical condition, which might, in turn, lead to more stress, in a pattern that causes both mental and physical strain.

The terms “mental wellness behaviors” and “self-care” describe activities that people can do to try to protect their mental well-being. Just like eating nutritious foods and staying active, mental wellness activities are very important in supporting mental health.

Coping strategies come in many forms. What works for one person may not be a good fit for another. Similarly, coping strategies that have worked well at one point might not be possible when you are experiencing extreme pain or fatigue due to AS.

So, it’s important to try several coping strategies. Consider writing a list of strategies you want to try. These could include:

• listening to relaxing music
• taking a warm bath
• going on a nature walk or a drive
• cuddling with a pet

To build coping skills, it’s a good idea to set aside time to practice a specific coping behavior every day, even when you aren’t necessarily in need. By planning time every day to engage in active coping behaviors, you’ll develop a practice of taking care of your mental well-being.

Self-compassion comes to mind first. Sometimes mental health suffers when people tell themselves how they should be feeling or behaving, as though there’s a script or standard that they need to meet. This is counterproductive, and often leads to feeling even worse.

It’s perfectly OK to adopt a gentler voice with yourself. Instead of saying, “I really should be more like others my age,” try saying, “It’s understandable that I’m feeling fatigued due to AS — I have a serious disease and I would not judge anyone else for feeling under the weather.”

Taking on the internal voice (or self-talk) of a supportive best friend can go a long way in helping you cope with these feelings.

It’s perfectly natural to feel added stress from AS. In addition to daily stressors, physical pain, stiffness, and fatigue can combine to make everyday activities challenging. That means it’s even more important to practice active coping — every day if possible — so that you can learn to control your stress.

Research has shown that even a few minutes of relaxation exercises per day can reduce cortisol levels and help with pain.

Coping can take many forms. Even laughter can reduce the body’s response to stress and help with pain management. The important thing will be to try out a variety of different coping strategies to figure out what works best for you.

Sleep is critically important for mental and physical health! Sleep disruption and fatigue are common symptoms in AS, so it’s important to take active steps to improve sleep quality.

For some people with AS, sleep disruption may be linked to pain, so pain management strategies could be helpful. These include:

• forms of occupational therapy
• acupuncture
• counseling, such as cognitive behavioral therapy for chronic pain
• relaxation training

Sleep hygiene means establishing good sleep habits. Below are good places to start to improve sleep hygiene.

Build a routine

The first step in building a sleep routine is to go to bed and wake up around the same time every day.

Establishing a bedtime routine can help you build consistency because it helps you wind down and prepare your mind and body for rest. A bedtime routine could include taking a bath, reading for 20 minutes, journaling, and so on.

Reduce distractions

Blue light from devices, such as your smartphone, can disrupt sleep patterns. If possible, turn off all devices a few hours before bedtime.

Since caffeine is a stimulant, avoid drinking caffeine late in the day, and try to avoid consuming large meals and liquids in the few hours before bedtime.

Also, reserve your bed for sleep — try not to scroll social media, watch TV, or work when in bed.

Create a sleep sanctuary

Make your sleep environment as comfortable as possible. Keeping your bedroom cool and finding ways to remove light, such as with blackout curtains, can help you fall asleep more quickly and stay asleep.

Many people find that the following help them fall and stay asleep:

• Fans. Fans can help cool the bedroom. Keep the room temperature a few degrees cooler than a comfortable daytime temperature.
• Weighted blankets. You may find that you’re more comfortable using these heavy blankets in a cooler room.
• White noise makers. White noise makers can help block ambient noise and also introduce a soothing rhythm that’s compatible with sleep.
• Sleep masks or window shades. Darkening sleep masks and room shades can help block out very early morning light and help you to stay asleep.

There are a variety of mental wellness apps that can help with stress management and mental well-being. Calm and Headspace are great for meditation and relaxation.

Habit-training apps, such as Streaks and StickK, help you form routines around coping and stress management by sending daily reminders and encouraging rewards for meeting your health goals.

For those seeking more support, cognitive behavioral therapy has been shown to be effective in reducing pain and associated stress of chronic disease. Cognitive behavioral therapy is available with a licensed counselor or through a virtual provider like Talkspace.

Dr. Marney White is a clinical psychologist and professor of public health and psychiatry at Yale School of Medicine. She has authored more than 170 journal articles and book chapters on mental health and health psychology. Her open course, Health Behavior Change: From Evidence to Action, is available on Coursera.