By: Jane Avellino
I was diagnosed in 2002 by my general physician, who was a D.O. And for a few years tried to cure my mostly back pain, and other painful problems that just wouldn’t get better. I was happily married to my high school sweetheart, a mom to 2 delightful daughters, 9 and 6. We were a very active family and spent so much time together outside. Soccer was huge for us and we traveled from St. Louis to Kansas City several times during each MLS season to revel in the then Wizards great repetitive seasons. When my Dr. diagnosed me and my pain, fatigue, fog and depression increased, I started attending a local support group.
So many of the other (mostly) ladies would tell tragic stories of their partners being completely non supportive. I was so relieved my husband never acted like theirs. He didn’t like me to carry groceries, pick up anything over a few pounds, go on very active family fun activities. He would push me in a wheelchair with my sweet girls on my lap when we would explore museums. And I continued to feel so blessed, how was I so loved? My poor friends had no idea how the tiniest bit of support, physical, mental, emotional – felt like, and I knew I couldn’t live without it. It meant THAT much.
Meanwhile my symptoms were growing. Nerve pain, numbness, headaches, TMJ, forgetfulness, sleepiness, lack of interest in sex, disinterest in much of a social life. My husband started verbalizing unhappiness, pushing and pushing me about going out more. We were in counseling and he tells me he isn’t interested in a disabled wife. WHAT?!? Who says that?
I was so hurt, embarrassed and turned off by this. Our marriage started mirroring all the complaints my support group friends relationships appeared to be. Suddenly I was the one that was embarrassed and sickened. He started telling me he wanted to go out without me. I couldn’t stay out as late as he could, couldn’t drink, dance, listen to loud music- which is a huge trigger for me, along with bright lights and strong smells. We deteriorated.
When my youngest was in middle school and my eldest in high school, I was napping every afternoon. One was busy in sports and several school activities but the other, I feel really had an absent mother. My guilt and unhappiness just skyrocketed, I was so unhappy, and so was my husband. We continued to grow apart and my disappointment in him grew. For 10 years I tried dragging him to counseling, church, retreats, and I pushed myself beyond my physical and mental comfort.
Our relationship just kept deteriorating.
We pretended for 10 years, that he was interested in being married to me. There was a 6-month separation during which he had an affair. He moved home telling me he was all in. That was 5 years ago. Tonight I’m in my new home, a small rental that needs work. He is in an apartment. We are committed to our sweet, sweet daughters. This is a permanent separation that will lead to our divorce. He doesn’t want a sick spouse and I don’t want limitations on my husband’s love for me.
We can remain friends for our daughters, and hopefully future grandchildren. The mental picture on my mental wall has had to change. What I see in our future is much different. I’m free, stronger, happier, and I no longer have to be embarrassed or disappointed in my husband. My symptoms ebb and flow. The pain and fatigue never leave me, they’re my constant companion. I don’t like them, but I like me. I’m so proud of me, it feels good, it feels great! I love me and my daughters are proud of me.