When I started having conversations with friends and acquaintances about my autoimmune disorder, people began to share their stories with me. Their personal narratives were about feeling a loss of control; physical discomfort and pain, the spectrum of fatigue to exhaustion; irritability; depression; anxiety; frustration and anger at oneself for not being able to do as much as before the illness; loss of income; family conflicts; and having others tell them that they “looked ok” –therefore feeling misunderstood.
So how, in addition to what is recommended by health care professionals, does one cope with a chronic medical illness? Here are some things to consider.
Be honest with yourself and kinder to yourself. Be honest about what you can and cannot do. Your chronic illness, with its pain and/or fatigue, impacts how active and focused you can be. If one’s work load, schedule and expectations need to be changed when there is a flare up, for example, this needs to be acknowledged, rather than pushing oneself to the point of harm. This also requires that one not be hard on themselves about being less able to function with the illness and when there is a flare up. We certainly can blame ourselves for what is not our fault. This is not to minimize the tough impact this can have on income and need to consider how this can be dealt with.
Does that mean give up? No, it means being mindful of our asset/strengths as well as illness imposed challenges; and the need for self-care. What is self-care will be both similar and different for people, but here are some possibilities.
Seek out the social support of those who have similar struggles. This could mean joining a support group though an association that is devoted to helping people with chronic health issues—either talking with others online or in person. Just keep in mind that others will have experiences and ways of dealing with chronic illness similar and different from yourself. You also could ask your health care provider for any suggestions that they may have about support groups and educational seminars and lectures about dealing with chronic health issues and symptoms. These need not necessarily be specifically about your diagnosis, as many illnesses share the same or similar symptoms, such as pain, fatigue, irritability, low mood, worry, family, financial and job problems.
Seek out a mental health therapist, such as a psychologist, social worker, or counselor who can provide support and help you with the emotional issues and symptoms that are part of the dealing with chronic illness challenge. This could include individual sessions, support groups, and, if it makes sense for you, couples and family counseling.
I have learned a good deal about coping with a chronic health illness from my own learning and receiving support; as well as from the clients I help and learn from.
If you will consider talking with a therapist about your personal experience with a chronic health issues, I would be pleased to talk with you about its impact on you and people in your life, and possible ways to enhance coping and quality of life.