Living With CFIDS

Confronting the Empty Nest
By Lilli Jolgren Day

Last August, my husband and I took our daughter to college. As we carried boxes to her dorm room, my mind wandered to her first day of kindergarten. She was dressed up in a new outfit and carrying her pink backpack. I took her picture on the front lawn before we left, where she posed with hands placed confidently on her hips, smiling fearlessly at the camera. When we got to school, I walked her to her room, kissed her on the cheek, and said goodbye. As I left, I turned to see her sitting alone in a sea of tiny desks clutching her Cabbage Patch backpack to her chest. It took all of my willpower to keep from scooping her up and taking her home.

When my children were very little, I began to feel ill. Chronic headaches, body aches, problems with sleep, fatigue, intestinal troubles, and cognitive difficulties began to overwhelm me.

The first doctor I saw did a routine blood screening and said that I was just tired. “Go home, you’ll feel better soon,” she told me. The next doctor said I had PMS. “Go home, you’ll feel better soon,” he said. The next doctor told me I had irritable bowel syndrome and mitral valve prolapse. “Go home, you’ll feel better soon.” The next doctor informed me that my titers for Epstein-Barr virus were high and that I had mononucleosis. “Go home, you’ll feel better soon,” he told me.

I went home, but I did not feel better for a very long time. It was 1984, and little was known about chronic fatigue and immune dysfunction syndrome (CFIDS), but I knew that I had it.

As another Mother’s Day approaches, I cannot help but think about the many women with CFIDS who are struggling with the question of whether to have children. My children came before my illness, so I was spared that difficult decision. It took a tremendous amount of effort to attend to the needs of my growing children while living with CFIDS, and I would love to say that my health problems somehow made me a stronger person, even a better parent. The truth is, I often struggled with many of my own questions. If I hadn’t been sick, what kind of mother would I have been? Would my children’s lives have been different, better? Would they have been more confident, had even better grades, gone through less teenage angst?  These are all questions that can never be answered.

As I confronted the “empty nest,” I found myself looking back over the past 20 years, reflecting on the good days as well as the days of absolute despair, and these are the things that I do know about being a CFIDS mom: The joy my children brought me surpassed the pain my illness burdened me with—many times over. The innocence and trust my children showed me negated the hopelessness and loss that my poor health plagued me with. They helped me to overcome the desire to give up or to give in to my personal miseries and grief. The love I felt for them gave me the strength to go on—because I was always a mother first, no matter what the state of my health.

The type of mother I would have been without CFIDS is something I will never know, so I have chosen to let go of yesterday’s regrets, keeping close to my heart only those memories and lessons that will shine a light and guide me through my tomorrows.

On that warm August afternoon as I lugged boxes filled with my daughter’s things to room 40—I remembered. And as I started to put things away and arrange her dorm room, my daughter put her hands confidently on her hips, smiled fearlessly, and told me that she’d do it, she’s all set, thank you, but you can go now. So I kissed her on the cheek and said goodbye. This time, I didn’t look back as I walked out of her room. I knew better.

Lilli Jolgren Day is a person with CFIDS in Michigan. She is also a mom, a wife, a business owner, an artist, and an occasional writer.