Porphyria: coping with the stress of a chronic condition

Porphyrias are rare metabolic disorders that prevent the body from synthesizing heme, a compound the body needs to make red blood cells, transport oxygen, and perform numerous other important functions. There are multiple types of porphyria, which can cause a variety of symptoms that affect the nervous system and skin. Some types can cause serious—and life-threatening—complications.

Having porphyria is a different experience for everyone. But one thing every person living with porphyria has in common—they are living with a chronic disease.

What is a chronic condition?

A basic definition of a chronic disease is one that lasts a long time. What constitutes “a long time” can vary depending on the condition being discussed—it can mean three months, longer than a year, or a lifelong condition. Porphyria is a lifelong condition. There is no cure and treatment focuses on preventing attacks and addressing symptoms.

Living with any health condition can be stressful, and chronic diseases are known to be particularly stressful. While symptoms vary from condition to condition, people with chronic diseases frequently report a lower quality of life due to numerous factors—the demands of ongoing healthcare, day-to-day management, financial burden, and the unpredictability of symptoms, to name a few. All of this can add up, and over time can negatively impact how you think, feel, and interact with others.

Reducing stress

Stress is something you want to reduce as much as possible. In addition to being harmful to physical and mental health, stress is also a potential trigger for porphyria attacks. Stress can also make it more difficult to stay consistent with treatment—and consistency is essential to preventing attacks and complications.

As with other aspects of porphyria, stress is an individual experience, and it will vary from person to person. With that in mind, here are some strategies that might help you address whatever stress you are experiencing.

• Watch for common symptoms. While we all experience stress differently, common symptoms of stress include irritability, anxiety, tension, loss of interest in things you enjoy, trouble sleeping, and trouble concentrating. Keep in mind that pain, fatigue, and gastrointestinal symptoms can also be signs of either stress or a porphyria attack—and should be taken seriously.
• Talk to your healthcare providers. Stress, moods, and emotions are important topics to discuss at your appointments. Your healthcare providers can help you find ways to address anything you are struggling with.
• Keep a journal. Take notes on how you are feeling, including things like your energy levels, moods, and anything that causes you stress. This can help identify causes of stress and patterns in how you feel.
• Work with a mental health practitioner. If possible, consider working with a therapist or counselor, which can help you find ways to cope with stress and/or other areas of your life you want to improve.
• Stay connected. Never underestimate the importance of having a friend to call or spend time with. You might also consider joining a support group for people living with a chronic condition.
• Focus on overall health. Eat well, exercise regularly, get enough sleep, and avoid habits that are detrimental to overall health and porphyria management—like consuming alcohol or using tobacco products.
• Try stress-relieving activities. Yoga, meditation, and breathing exercises are popular stress-relievers and do not require much time commitment.

Working with a therapist, meditation, journaling—all of this can seem like a bit of a commitment, especially when you’re juggling a chronic condition along with all of life’s other obligations and commitments. Don’t take on too much at once. Focus on making small changes and staying consistent over time.

At the very least, schedule some time for yourself to relax and do something you enjoy—a hobby, a creative pursuit, even something as simple as watching a favorite TV show, reading a book, or listening to a song.