by Brooke Keefer
Sphincter of Oddi Dysfunction can take a toll on even the happiest and healthiest of relationships and marriages. Through the online support groups I manage, and emails I receive, I have read countless stories of SOD putting a strain on and in some cases destroying marriages and relationships.
I am not writing this to scare you or make you paranoid about your current relationship. I have simply learned from others’ and my own experiences and hope that by sharing these experiences with you, your relationship can benefit and remain strong.
Prior to my SOD and subsequent illnesses spiraling out of control, my husband and I were a happy couple. Our relationship was admired by acquaintances, as well as our friends and family. It was healthy, loving, and full of hopes and dreams. However, once I became disabled by my SOD, everything changed—not immediately, but over time. My husband tried his best to be loving and supportive in the beginning, but as years went on, our connection and bond faded along with my health and weight.
We are now legally separated, waiting for our divorce to be finalized. My husband chose to leave in July 2016, which cemented and realized one of my greatest fears of him abandoning our marriage. At a time when I thought we should be celebrating my wellness (I had been feeling dramatically better for several months), we were ending our marriage. I cannot pinpoint all of the reasons why he made this decision, and writing about assumptions would not be fair to him. However, I can say that my illnesses, including SOD, played a major role.
For several years, my husband lost his wife, a career-driven, independent, positive, energetic, fit, and spiritually sound woman. In time, my SOD reduced me to a shell of a person. My body whittled down to 90 pounds. I looked like a victim of starvation and was put on a feeding tube, none of which was very sexy. I spent much of my time in emergency rooms and hospitals. I was miserable and hopeless. I pushed him away and even encouraged him to leave me (I just never thought he’d take that statement seriously). I nearly died twice from sepsis and often thought I should have died because living with the constant pain, nausea, fatigue, weakness, and severe depression was torture. Everyone in our family suffered along with us. It was truly a nightmare.
My husband seemed committed to me for the first few years of my illness. Then, I noticed signs of him “checking out” of our marriage. He didn’t take an interest in my conditions or attended most of the procedures or scans with me. When my SOD book was published, I didn’t hear so much as a congratulation. I was not shown love or affection for the last few years. I’d try to hold his hand and he’d push it away. I felt ugly, unloved, and deserving of his rejection. For several months, I sensed on a gut level he was leaving me for an ex-fiancee. This came to fruition within a month of him leaving.
The good news is that him leaving me was the best thing that could have happened. I can now say I am feeling the best I have in many years and have acceptance and gratitude for his decision. I have my confidence back and get compliments all the time for “how great and healthy I look.” Though my husband wasn’t cut out to deal with a partner with chronic illness, I now know whoever I end up with must be able to love me unconditionally. I also know I have to be a better person in the relationship regardless of how I feel.
The breakup has gifted me with the awareness that I deserve to be loved regardless of my health status. Through the loss of my marriage, I am growing into a strong, empowered woman who will never settle for less than what I deserve. I am comfortable with being single and recognize I really don’t need a partner in my life to feel whole. I have hope today that fills my heart. I enjoy time with friends, my kids, granddaughter, and family. I started guitar lessons, pole dancing fitness classes, attend church, travel, do yoga, and overall life is good.
What advice do I give couples who are dealing with an SOD partner? First, the SOD patient needs to be just as responsible for the relationship as the caretaking partner. You must accept complete powerlessness over your partner and the choices he/she makes—don’t let them define you. You cannot turn them into a nurturing caretaker if it isn’t in their nature and they are unwilling to work on it. You cannot force them to be by your side. Yes, you should always encourage your partner to join you at appointments within the limits of their work schedule and send them articles on SOD. However, in the end, you cannot make anyone do anything they don’t want to do.
Go to couples or marriage counseling. Find someone licensed in couples counseling modalities and evidence-based marriage counseling practices. Not all therapists/clinicians are qualified to treat couples. If your partner won't go, then you go. It can't hurt. You may find ways to improve your relationship on your own. Also, take time to check in with each other every evening.
If you are a faith-based, spiritual, or religious couple, seek support from your congregation or pastor/minister. Possibly he/she knows other couples experiencing chronic illness and connecting with people with similar issues may be a great support for both of you.
If you have some good days, embrace them and do something together like a movie, a walk, or a drive in the car. Dinner out may be a challenge with SOD, so try to find other ways to enjoy each other's company or allow your partner to order food while you limit your meals.
Above all, do not push your partner away, shut them out, or tell them to leave you—EVER! Do as much as you can to show appreciation to your partner. Don’t complain night and day about your symptoms. Try as best as you can to see the positive and have faith.
The relationships I have encountered that seemed to grow stronger or remain constant through one partner’s illness possessed a level of commitment I found amazing. These couples shared: mutual respect, a strong and undying faith, unconditional love, acceptance of the illness by both partners, lack of self-centeredness, loyalty and fidelity (emotionally, physically, and spiritually), nurturing, and above all honest, open and consistent communication.
After I finish my next book, Living Well without a Gallbladder, I plan to write a chronic illness dating and relationship book. I will have so much to share as I’ve been through it all—chronic illness while in a relationship, dating with a chronic illness, and dealing with a chronic illness breakup. I know I am not alone as I’ve met others with similar stories and hope to be able to help people navigate relationships while struggling with a chronic illness. Right now, I’m gathering some very interesting personal stories for the dating chapter!