Living religious life with chronic illness

Living religious life with chronic illness

By Mary Therese Johnson OP

The year 2000, the Jubilee Year, a time to “open wide the doors,” marked a significant change for me both personally and professionally. It felt like doors were closing to me rather than opening. In July of that year I was diagnosed with Crohn’s disease just before starting a new ministry as a co-director at our Collaborative Dominican Novitiate. (Crohn’s disease is a chronic disorder that causes inflammation of the digestive tract.) Of course I was determined not to let this condition get the best of me. With hope that my health issue would not be a problem since I had caught it early, I set off for St. Louis, MO.

Soon strange things began to happen. Severe pain raced through my body each day—first it attacked my neck, then it jumped to my feet, then it ran through my shoulders to my hands, and in the evening the pain rested in my back and knees. There I was, in a new ministry, in a new place, with a new health condition. Where would I go for help and support? How could I be fully present with my community of novices and my co-minister?

Each day held its challenges, and I gave my all to try to make everything work. And the roller coaster ride began. After a long search for doctors, I found some help and went for physical therapy, discovering that warm-water swimming helped immensely. I would be up on top of the roller coaster ride, feeling that I was getting better, and then I would come rushing down with a setback. When the roller coaster ride wasn’t stopping, I also sought help through counseling.

Again I set my hopes high that the health issues would be manageable so that I could be fully engaged in community life and ministry, as I so strongly desired. However, much of my life was consumed with self-care and pain management, so it became increasingly difficult to be faithful to my commitment at the novitiate. Ultimately, with much prayer and consultation, I made the decision to resign.

Fortunately my congregation supported and encouraged me to be attentive to my healing. I had a three-month sabbatical, sought new medical help, and was further diagnosed with fibromyalgia (a chronic musculo-skeletal pain and fatigue disorder) and chronic fatigue syndrome. Now, after coping with these health concerns for five years, I am able to engage in community life and ministry with new wisdom. The conditions I have are chronic. They are still with me, and I have learned to accept this reality. The choices I make affect my whole person, and so I make those decisions wisely.

I share this background because there may be a correlation with people who are entering religious life. Beginning a new way of life is challenging for anyone, even if he or she is healthy and enthusiastic about the venture. Add to the mix a chronic health condition that has serious implications, and there is a possible meltdown waiting to happen.

In this article I will address the emotional and spiritual impact of my chronic illnesses, as well as the impact on community life and on ministry. Then I will share some suggestions for vocation ministers who are working with inquirers who have chronic illnesses.

The emotional and spiritual impact

I believe that the human body, mind and spirit are intimately connected. So when the body is suffering, all parts suffer. When a significant relocation adds further stress, the emotions are perhaps overactive and contribute to stress on the body. Exhaustion compounds the situation and affects thinking, physical activity, as well as sleeping and eating patterns.

As a woman religious my spiritual life is vital to my being. Fortunately I found a compassionate spiritual companion in St. Louis who listened well and helped me to process what was happening. Many tears were shed. Through this initial stage of coping, my prayer became the glue that held me together. I engaged in more intense dialogue with God. Music, journaling and spiritual reading helped me express what was going on inside. Yet at times even my prayer life seemed to be a desert experience.

Though my closest friends were far from St. Louis, I knew understanding and support from them. I didn’t want my family to worry, so initially I kept my pain from them. I sought other emotional support and guidance from my provincial and a therapist. Luckily I am resourceful and have developed coping skills over the years. Yet, even with all the love, support and understanding, my spirit was devastated.

My head and my heart eventually led me to a significant decision to resign from my position as the co-director at our novitiate. I could no longer resist the messages my body was communicating. While coming to that decision I struggled with the sense of failure, of letting others down, of being “a wimp.” I was scared about the future.

The future came quickly. I had no idea what lay ahead of me. I participated in a three-month wellness sabbatical. With loving support and the space to heal, my spirit began to mend. Yet my body continued to experience extreme pain and exhaustion. Now what? It was clear to me that I could not return to my former way of being. A struggle between my body and spirit continued. Finally I could struggle no longer. Through the struggle I did learn to take a day at a time and to be my own best friend. I came to realize that I was not a “super sister” and that I could say no and still be a good sister. I needed to put limits on what I could do. Doctors, therapists, spiritual director, friends, community and family all contributed to my well-being. It is very humbling to rely on others. In the past I tried to avoid being vulnerable; now I realize that it has the potential for tremendous wisdom and growth.

Participating in a study on chronic fatigue syndrome at DePaul University gave me important knowledge and skills to manage my disability. I began to befriend my body with all its pain and shortcomings. In doing so I became less resistant to the “dis-ease.” I found help through alternative medicine, especially through acupuncture, massage therapy and warm-water exercise. The expense of these aids added stress because I felt guilty that I was a financial burden. The emotional and spiritual impact of chronic illness is very tangible. I am constantly aware of my need to pace myself and to engage in healthy self-talk. I do not want to define myself by or be a victim of the chronic conditions.

Impact on community life

I have lived in community my whole life. Community life affects the well-being of its members, and each member influences the well-being of the community. When my life was changing because of illness, I was in a novitiate community. I saw myself first as “sister,” one of the community, who was also a director. I had a good relationship with the novices. My role as director, however, was always present in the eyes of the novices. Living in the novitiate community with an illness complicated the situation. The intent of their year is to discern their vocations through prayer, study, ministry and community. When one of the directors has a serious health concern, the focus can be skewed, even if unintentionally

The novices were aware of my situation and wanted to be sensitive to me. I needed assistance with some of my household tasks. I also needed a companion for some of my tests, as I was unable to drive myself. As part of the novitiate year a professional facilitator helped us process our life together. Naturally concern for my health was a significant issue. It was difficult for me to be the focus. I sometimes translated it to, “I am a problem.” My identity as a person was changing, and I didn’t know how to be “in community.” I did try to be present in community, yet emotionally I was feeling disconnected. I became more cautious. The stress of the situation added to the pain of my illness.

I shared with the community my decision to resign. I had planned to leave in June, at the end of novitiate year. However the community encouraged me to leave sooner. Leave-taking is a difficult process for me. The pressure of packing, completing my records and saying good-bye affected me emotionally and physically. When I left the novitiate, I lived in community on sabbatical. There I experienced relief of pressure. We were all engaged in healing. Being able to be and speak freely enhanced the healing for me. I learned so much from what the others had experienced. I also felt respected and understood.

After the sabbatical, I returned to the community I had been with before the novitiate. Now I was living with my peers, so I was not returning to the pressure of being the director and role model as I had been in the novitiate community. Clearly I was unable to do certain things. The community members graciously welcomed me back and accepted my limitations. They took on more responsibilities for household tasks, helped me sabwith my laundry, and in the beginning, drove me to my many doctor appointments. We intentionally talked about the belief that, “We are all doing the best we can.” Though the community never pressured me, I felt that I was not doing my share and I would apologize, though I need not have. I was frustrated sometimes when others would do things for me that I could do for myself. I tried to show my appreciation despite my frustration. I believe that the love, understanding and concern of my local community, as well as my religious congregation, have been central to my healing as I live with chronic illness.

Impact on ministry

My 35-plus years in religious life have been filled with meaningful service. I am the person I am today because of the many relationships and experiences in ministry. Chronic illness changed my way of being in ministry. For the most part, ministry has nourished my spirit. I’ve been an educator, director of religious education, pastoral minister, liturgist, campus minister, vocation director, spiritual director and co-director of the novitiate. I served on different committees. I have often said yes to requests for assistance with projects. Perhaps this over-commitment contributed to the onset of my conditions. When full-time ministry was impossible for me, I really had to examine my perception of self-worth that depended on what I did. I want to be a contributing member of the congregation.

I have already mentioned some of the other emotional pressures involved in this life-changing experience of chronic illness. One difficult part of the ordeal was applying for Social Security Disability. I filled out numerous forms, collected documentation, spoke with lawyers and was turned down twice. I was discouraged and felt useless. Yet on the third appeal I was accepted for assistance. I report to the Social Security Administration, but there is no guarantee that the financial assistance will continue.

Today my ministry is rewarding. I am able to draw on the skills and experiences from my past. My ministries include part-time service at the National Coalition for Church Vocations and at the Hesburgh Sabbatical Program; plus I free-lance as a spiritual director and retreat facilitator.

Sound full? This load is very manageable because it gives me the flexibility I need to take care of myself, and the ministries give me energy. My biggest challenge, now that I am not in a flare-up mode, is to re- member to pace myself. If I overextend myself, there are serious consequences. I take one day at a time. I continue to devote time to exercise, massage and acupuncture. I try not to take things and people for granted. Most importantly I have learned to live a more balanced life that is both active and contemplative.

Suggestions for vocation ministers

Storytelling can often give us helpful insights. Hopefully my story has given you greater sensitivity to some of the effects of living religious life with chronic conditions. Perhaps you can see some correlation with women and men who are inquiring about membership in our congregations. It is possible for people to live a healthy religious life with chronic illness. However, I would caution you to find evidence that the seeker is able to cope successfully with the stress of having a chronic condition. Invite the person to participate in a mission experience (at least one or two weeks long) where he or she gets a taste of the lifestyle beforehand. Go on the Internet and find information about the condition. Talk to health professionals for their wisdom. Have conversations with religious who are living with chronic illness. If candidates are new to the experience of chronic illness, it would be prudent to suggest that they deal with their health first. Those who have learned good coping skills can enter more fully into the initial membership process. They often have great wisdom to share with others in community.

Mary Therese Johnson, OP is a Dominican of Sinsinawa, WI. She has served as both a vocation director and later as a co-director at the Collaborative Dominican Novitiate. Presently she is on the staff of the National Coalition for Church Vocations.

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