Battling Our Demons: The Emotional Impact Of Spondyloarthritis

By Elizabeth Maines, PhD

It is normal to feel depressed or discouraged after being diagnosed with a chronic illness, and oftentimes people struggle with feelings of loss.

The Swiss-American psychiatrist Elisabeth Kübler-Ross, MD developed a theory called “The Five Stages of Grief” in her 1969 book, On Death and Dying. I have found that Dr. Kübler-Ross’ stages have worthy application toward the losses we face as individuals diagnosed with spondyloarthritis. The five stages are not linear, and an individual can move back and forth through the process, revisiting a certain stage multiple times. I can vividly recall my own emotional process after getting diagnosed and experiencing these five stages.

• Denial/Shock: “This isn’t happening, it will go away.” This is a normal, self-protective mechanism that occurs when you feel overwhelmed by receiving difficult news such as a medical diagnosis, death, or accident.
• Anger: “This isn’t fair! I didn’t do anything to deserve this!” This is one of the most common emotions that may occur after the denial and shock have subsided. Beneath the anger is deep emotional pain, which can lead to questions like, “Why me?” For some individuals, the anger can result in emotional outbursts toward family, friends, physicians, coworkers, and even God.
• Bargaining: “Please don’t let this ruin my life,” or “If you make the pain go away, I promise I’ll be a better person.” During this stage, we begin to make promises or bargain with ourselves, others, or a higher power, vowing to do anything that might make the pain stop. Some people find themselves trying to negotiate their way out of the hurt and pain by reflecting on their past.
• Depression/Grief/Anxiety: “People our age shouldn’t have to deal with things like this.” “I’m not prepared to be disabled—I have things I want to do.” “How will I support myself/my family?” or, “I’m going to be in pain forever, so why even bother?.” Once we begin accepting the reality of the situation and are emotionally more aware, we may start to feel depression or anxiety settle in. Spondyloarthritis is a lifelong, chronic illness that is often diagnosed during the prime of our life. It can have a substantial impact on our livelihood, and result in considerable changes to our lifestyle. And we feel the loss. We may experience feelings of sadness, grief, and anxiety over the loss of a career, the loss of a physical ability, lower energy levels, and decreased ability to take part in social activities or connect with loved ones due to the illness.
• Acceptance: “I’m not going to let this disease define me. I will learn to deal with this the best I can.” During this stage we begin to accept the situation and reevaluate our expectations for the future and the new normal for our life. We recognize that we cannot live exactly the way we used to live, be who we used to be, or become who we thought we’d become—but we can adapt and move forward nonetheless.

Research shows that stress and negativity can impact a person’s emotional wellbeing and worsen chronic illness. For example, an increase in stress hormones can lead to inflammation in the body, causing symptoms to become more severe. Shifting your attitude and perceptions by focusing on the positive aspects of the day rather than the negative, will help emotionally as well as physiologically.

There are ways to help reduce emotional stress and instability. Initially, it’ important to spend some time processing your emotions and evaluating the feelings brought on by your diagnosis. It is okay to take additional time if needed to fully heal.

Here are some concrete tools to help reduce emotional stress:

• Talk with someone—such as a spouse, friend, therapist, or spiritual advisor—who is emotionally supportive can help relieve stress and anxiety.
• Join a support group, either in person or online, can connect you with others who understand. However, keep in mind that sometimes you may come across unhappy and negative people—but try not to be deterred.
• Journaling and blogging can also be great tools, helping to get thoughts and feelings down on paper.
• Think about one thing you are grateful for each morning before you get out of bed, and one thing before you go to sleep at night. It may be challenging some days, but over time you will find that it helps keep your mind focused.
• Find your new bliss, new hobbies or passions, and ways to enjoy life while respecting any new physical limitations you may be dealing with.
• Find meaning and purpose in your new way of life. Start a support group in your area to help guide others.
• Find new ways to communicate and connect with family and friends that allow you to sustain meaningful relationships.
• Nurture and be kind to yourself, set boundaries with others when needed, and practice self-care.
• Establish a new routine that better fits your needs. Learn to ask for help, and communicate concerns with loved ones.
• If you have lost some independence, empower yourself by incorporating tasks to complete independently that are within your means and ability.
• Be patient and kind to yourself. Again, this is our new normal, but just because we are living with a chronic illness doesn’t mean that we can’t find joy. Make new friendships, and do your best to have good days, weeks, months, and even years.

Last, I want to discuss the difference between clinical depression and feelings of grief. Unfortunately, a person who is diagnosed with a chronic illness is at a greater risk for clinical depression. Clinical depression is a serious illness and should be treated by a professional. Some of the warning signs of clinical depression are feelings of sadness that last longer than a few weeks, decreased engagement with or ability to carry on with daily activities, and other disturbances listed below. The health effects of depression go beyond mood. Depression can trigger physical symptoms that may even be confused for spondyloarthritis symptoms.

Symptoms of clinical depression include:

• Feeling sad, irritable, or anxious
• Feeling empty, hopeless, guilty, or worthless
• Loss of pleasure in usually-enjoyed hobbies or activities, including sex
• Poor self-care such as not bathing, not taking needed medication, not getting medical care
• Fatigue and decreased energy, feeling listless
• Trouble concentrating, remembering details, and making decisions
• Not being able to sleep, sleeping too much, or waking too early
• Eating too much or not wanting to eat at all, possibly with unplanned weight gain or loss
• Thoughts of death, suicide, or suicide attempts
• Aches or pains, headaches, cramps, or digestive problems without a clear physical cause

Be aware of your body and mind, and seek help if needed. Please remember that you are not alone. There are people who have gone through what you are experiencing and are better because they reached out for help. I am one of them.

Dr. Elizabeth Maines is a licensed clinical psychologist from Santa Fe, New Mexico. She is currently employed by a large government agency, but prior to that she was in private practice and worked with individuals with chronic and terminal illnesses. Dr. Maines and her wife (also a psychologist) enjoy the arts, history, and the music scene in Santa Fe. Dr. Maines was diagnosed with ankylosing spondylitis later in life. She was first diagnosed with chronic iritis in 1995 and has struggled with chronic back pain her entire life.

By: Elizabeth Maines, PhD

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