Managing a Relapse after Stressful Times

This series focuses on coping with rheumatic disease and the challenges of the healing process, written especially for patients on antibiotic therapy. 

Dr. Susan E. Grober is a clinical psychologist.  She specializes in health and wellness as a researcher and psychotherapist, and often writes about issues important to patients.

Question:  I have been doing well on AP for a few years and was beginning to think I was in permanent remission and would no longer be facing my disease.  But after a series of difficult personal events and trying times, my illness surfaced and now I have to work once more on regaining my health.  This has been a very humbling experience for me although I know I can return to feeling well if I stay on AP and make other changes in my life.  Do you have any suggestions for managing one's reactions to unexpected events that are high on the stress scale and dealing with the reality of the nature of chronic illness?

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After the excitement of finally getting your rheumatic disease under control, it's easy to forget not only that AP is keeping you well but also to assume you're cured.  And to most people "cured" means that an illness is gone forever, and you can forget about your diagnosis and the healthy routines you may have established. When you're feeling well, it's common to forget that the course of any chronic illness is unpredictable.  This unpredictability means that you can be doing just fine, then become symptomatic, or, conversely, be doing terribly, only to be delightfully surprised by a good, and sometimes fairly rapid response to AP. Sometimes people stop AP, on their own,, or on the advice of their rheumatologist, because they are asymptomatic and have normal lab values, and, some of these men and women will experience a recurrence. Enjoy your good health and any drug-free periods if you achieve them, but keep in mind the likelihood that you may need to resume or adjust your treatment regime. And remember to expect the unexpected; you will be less likely to be thrown for a loop when your health status changes. 

I suspect that some of you are now thinking, "Well thank you very much.  You're telling me to live in a state of anxiety, never knowing how I'm going to be feeling."  No, no, and no again! The point I want to emphasize is to prepare for any bumps in the road that you may encounter by acquiring the skills you need to stay the distance on the road back to health. And, please remember not to measure the success of your journey by how rapidly you reach your goal, or how long you remain at your final destination, but rather measure your progress by how skillfully and gracefully you handle the detours and unfamiliar terrain that characterize all adventures.

The obstacles and challenges you face in managing your disease process, as mentioned in this question, are often unexpected major life events.  I'm sure many of you are familiar with the Life Stress Scale. This scale assigns a numerical value to 43 stressful life events, ranging from the death of a spouse, which is assigned 100 points, to increasingly minor stressors, such as vacations (13 points) or a minor violation of the law, such as a parking ticket (11 points).  Scoring 150 points on this scale increases your risk of developing an illness to 50 percent, and 300 points worth of stressful life events places gives you a 90% chance of health problems.  In this letter, our writer mentions "a series of difficult personal events."  They are not specified, but let's assume, to illustrate the impact of change, that they're job-related. Losing a job, having a change in financial status, changing to different work, and change in work responsibilities, which often occur together in time, would yield a Life Stress score of 151.  So you can see that just one change can set into motion a chain of events that put you at high risk of relapse of your rheumatic disease! 

You can download this test from the internet.  Just "google" the "Life Stress Scale", developed by Holmes and Rahne.  Keep a copy of it at home, and when you're feeling overwhelmed, glance through it, and see how many stressful events you're experiencing, and how high they are in the stress hierarchy.  When you see that total life stress number rise, remember that you may experience an increase in or return of previous resolved symptoms. And remember too, that good stress is still stress! Changing to a better job, or moving to a bigger house are considered stressors and are categorized on this scale. Having an explanation for a health setback can be very helpful. You are likely to find it reassuring that your not feeling well is not a mysterious event. Rather, the current level of stress in your life has risen, and you can now intervene to manage it, and hopefully reduce the accompanying physical symptoms!

For times of change, both good and bad, develop a variety of stress management techniques.  Meditation relieves stress and pain.  Writing about painful and difficult life events brings decreased pain level and increased ability to understand these experiences..  Visual imagery tapes, of peaceful, safe places, are readily available in bookstores or on-line, and induce a state of relaxation.  Consulting with a licensed psychologist or social worker can help, if these self-management techniques aren't enough.  And importantly, attend to your treatment protocol.  Have you decreased or stopped your antibiotics?  If so, now is a good time to visit your physician and adjust your medication.  Have you slipped into poor eating and sleeping habits, forgetting that nutrition and rest are critical for continued recovery, especially during difficult times in your life?  Read through these coping strategies whenever you need to, and make sure you're taking care of your physical and emotional health.  And, importantly, don't forget to check out your thoughts! Cognitive therapists know that what we think determines how we feel.  Are you buried in hopeless, helpless thoughts? An example of this negative thinking would be, "Oh no! My ankles ache again.  I'm not going to be able to walk soon, and then what will I do?"  Instead, reframe this thought in a more positive light: "I notice that my ankles are somewhat painful.  I'd better get some rest, do some gentle yoga, and if I don't feel better in a bit, I'll see my physician and talk to her."

This skill set will prepare you for the ups and downs of life with a chronic illness.  Traveling the road back is a different journey for every one.  But everyone has surprises on their trip, some wonderful, others frightening, but all of the experiences along the way present opportunities to use coping skills and move on forward.  And don't forget to rely on your fellow travelers for support and advice. Companionship makes traveling more pleasant and more educational!