It may have taken some time to get a correct diagnosis, but now you have a name for the cluster of symptoms that you have been experiencing. Being diagnosed with spondyloarthritis (SpA) can be a confusing experience. Though often there is a sense of relief associated with knowing your diagnosis, you may also experience associated feelings of denial, anger, shock, loss, or frustration.
Because spondyloarthritis often presents in a young person in the prime of life, it can deal a significant blow to self-esteem and confidence. Knowing you must learn to live with a painful, chronic condition, and to start visiting doctors and taking medications, can generate tremendous fear for the future. Fortunately, many people diagnosed with SpA find that with appropriate medication, a commitment to lifestyle modifications including exercise, and the support of a strong social network, their condition can be adequately controlled. In time, many discover that, while residual pain and discomfort may linger, the pain does come and go, and they can learn to accept and manage their condition as their new normal.
Remember that even for the most well-adjusted among us, having to deal with SpA can, at times, be challenging. That is why it is important to be gentle with, and easy on yourself, and make self-care a priority. If you find yourself in an emotional rut, it can be helpful to consult with a mental health professional who is experienced in treating people who have a chronic illness. The more positive support you can bring into your life, the easier it will be to keep SpA from imposing limitations.
There are several practical self-care measures you can take, which are backed by research, to improve your mental health and wellbeing.
Exercise: It can sometimes be challenging, but find a way to be active at least 30 minutes per day, three days per week. (Don’t forget to stretch!) You don’t have to go to a gym. Get outside, see nature, and get some sun. Research shows that people who exercise regularly have better mental health and emotional wellbeing. Exercise has also been shown to help improve some mental health conditions, like depression and anxiety.
SAA has developed an exercise program specifically for individuals with spondyloarthritis. Back in Action, Again offers fitness guidance that will help you increase flexibility, stamina, and strength, relieve stress, and decrease aches and pains. Visit SAA’s Exercise section for additional resources.
Mindfulness: Learn mindfulness, the practice of being fully present in the moment and aware of your thoughts, feelings, and physical sensations. Take 10 minutes each day to engage in this gentle, non-judgmental practice. There are many free online resources to learn and practice mindfulness. There are also smart device apps that you can download to guide you.
Sleep: Use sound sleep practices by eliminating ambient light, sticking to a regular bedtime routine, and avoiding screen time in bed.
Nutrition: Nourish your body and eat a healthy diet, such as the Mediterranean diet or other diets with anti-inflammatory properties. Visit SAA’s Diet and Nutrition section for additional information and resources.
Research tells us that those who have a strong social support system do better than those who do not. SAA’s Spondyloarthritis Educational Support Groups can become an important part of your support network. We know that taking an active role in managing your condition, backed by a sound knowledge base, will have a positive influence on its outcome. Therefore, a support group that focuses on spondyloarthritis education, as well as emotional peer support for those living with a chronic illness, can be incredibly empowering.
Groups provide members with current information and education about how to manage their disease; the opportunity to hear from speakers who are educated about SpA; confidential, non-judgmental interaction with others; and understanding and assurance that you are not alone in your experience. SAA has a wide network of support groups—meeting in-person, in locations across the U.S., and meeting virtually, online, for anyone to join no matter where you are.
In addition to SAA’s own support groups and online forums, there are a number of virtual support groups created by others in the community. At this link, we list some of these groups in an effort to help our community find connection and support.
Depression and anxiety are normal emotional responses to a life-altering situation, such as a diagnosis of SpA. Most people, in time, learn to live with the inconsistencies of SpA and its ups and downs. But if your distress persists, becomes severe, or starts to interfere with your daily life and functioning, it might be time to reach out for help.
Potential signs of clinical depression include:
❖ Marked changes in sleeping patterns
❖ Ongoing fatigue and listlessness
❖ Changes in appetite (loss of appetite or over-eating)
❖ Uncontrollable feelings of sadness, guilt, hopelessness, worthlessness, or purposelessness
❖ Disturbances in memory or concentration
❖ Suicidal thoughts
❖ Difficulty with sexual function or loss of interest in sex
Potential signs of clinical anxiety include:
❖ Feelings of severe worry, fear, and tension
❖ Physical changes such as increased blood pressure, rapid heartbeat, trembling, or perspiration
❖ Recurring, intrusive thoughts and concerns
Research has shown that people living with chronic illness experience higher rates of clinical anxiety and depression than the general population. If you are experiencing these issues, it may be time to seek help from a mental health professional. There are many counseling and therapy options available—with both in-person and virtual sessions offered.
Some mental health professionals are specially trained to work with individuals with chronic illness or pain. These professionals, often called health psychologists, understand the mind-body connection and how medical diagnoses can affect mental health. It all comes down to finding the right professional for you and your unique situation.
If you are in crisis or suspect you may be approaching it, please reach out now. You will find a listing of professional associations, crisis hotlines, and other helpful resources, here.
There are caring professionals waiting to offer support and understanding, help locate needed resources, and work with you on navigating the emotional landscape of chronic illness, relationships, depression, substance abuse, chronic pain, isolation, and numerous other difficult life situations.
Psychologist Liz Maines, PhD discusses self-care for improved mental and emotional health while managing ankylosing spondylitis and related diseases.
Heidi Waltz, patient advocate, and SAA educational support group leader, discusses her journey with SpA and how she became involved in peer support groups
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