How does chronic illness impact the partner?

How does chronic illness impact the partner? 

They may lose social connectedness with others, as illness requires more of a homebound life. They may lose sexual connection, as illness saps desire. They may lose mental and physical well-being, as worry about their spouse's illness drains their equanimity. Partners are hurting and they often hurt in silence.

When people recite their wedding vows to their person, do they really think they will one day be in the position to honor the vow of "In sickness and in health"? In January of 1994, I made that vow to my person but to be honest, I didn't give it much thought. we were still young, I was 27 and he was 30. I had already had children from a previous marriage and in 1995, our family was complete with the birth of our fourth child. Like any marriage, it was work. There was stress and there were blessings. The stress we had in the early years of our marriage was brought on by my husband adapting to being a step-parent, co-parenting with my former husband, financial difficulties, and many other things, some unspeakable. The blessings were God giving our children hearts of forgiveness for both of us as we had made many mistakes as parents. God always provided for all our needs. One stress in those early years was not an illness. My husband worked many long hours, on his feet as an executive chef and his only complaint was an occasional backache or sore feet. I too was often fatigued from my job as a certified nursing assistant and raising four children. Neither of us saw these pains in him as warning signs. Around six years into our marriage, he stepped on a rusty coat hanger that was used to hold up a car's muffler. The rusty hanger went through his shoe and pierced his foot pretty deeply. Despite my urging him to get it looked at and to make sure he was up to date with his tetanus vaccine, he decided it would heal on its own. Just a day or two later, the dreaded streak of infection was climbing his shin and before we knew it, he was in surgery to put a drain in his foot to drain a staph infection. He healed from the surgery, but soon after he started having increased pain in his back and most of his joints. He had inflammation and fatigue. It took quite some time, many tests, and an incorrect diagnosis and finally he was diagnosed with Ankylosing Spondylitis (A.S.). More often than not, A.S. will stay dormant until trauma to a carrier's body will trigger it to become active. We believe the staph infection from the rusted coat hanger incident was the cause of his A.S. to rear its ugly head. His symptoms and pain increased fairly quickly and in December 2002, he was forced to stop working. This was the start of a very long road ahead, full of fear, frustration, pain, anger depression, and a test and growth of our relationship. It took 3 years for him to get approved for Social Security Disability Income. With only my income and 4 dependent kids, it wasn't long before we were at the poverty level. We made many adjustments and sacrifices so the kids were provided for.  

The uncertainty of our future took its toll. God was faithful, he met our needs and he used so many people throughout the years both known and anonymous to bless us. The kids grew up, finished high school, and college, have careers, and three of the four are married and have children of their own.

The beginning of the A.S. journey was extremely hard. Honestly, we weren't in a good place, to begin with when the diagnosis came along. The changes A.S. caused put stress on an already stressed marriage. I had already started making plans for a future without him. The diagnosis came and I stayed out of obligation and guilt. I prayed for patience, guidance, strength, and compassion and God delivered. Somehow, he changed us. My semi-hardened, angry heart was softened. My husband's stubborn, angry, and mentally abusive characteristics became less and were replaced with humbleness. He too let God in much more than he had in the past and he became a man with compassion and love. I truly believe it's important to find the good in every situation and the good that came from this relentless disease is that we became better people, to each other, to our children, and to everyone. We became friends again, we grew to like each other and truly enjoy each other and we fell back in love. The newfound love (for me anyway) was a more mature love. I knew the road ahead was only going to get harder as the A.S. progressed, but the love I felt/feel is much stronger than the hard times.

Doctors didn't know much about Ankylosing Spondylitis and we had to educate ourselves and ultimately, them. Even the information we found was limited. There are many similarities in people with A.S. but it also affects everyone differently. I think the limited movement and poor diet choices led to him becoming a type II diabetic which causes its own set of problems. He was a 2.5-pack-a-day smoker for many years (we both were), I quit and hoped he would join me but it took him several more years to finally give it up. These two things certainly contributed to his poor health. He has significant hearing loss (inherited) but pretty much every part of his body has been affected by A.S., in one way or another. From the beginning to the present, he has had multiple hospital stays, some in ICU in critical condition. He has gone into stage 4 kidney failure and now has chronic kidney disease (CKD), he has had 3 stents implanted to open up the 95% blockage to and from his heart. He has become addicted to opioids, he has gone through withdrawal, allergic reactions to medications, several falls, a deep hematoma on his knee which required months of at home nurse visits and wound care, several ambulance rides, broken ribs from falling, fractures in his back, multiple infections, IBS, constipation, frequent nausea, hypertension, three toe amputations, psoriasis, Iritis, the start of cataracts, a recent diagnosis of COPD and has lost 5" of his height.

So here we are 22 years later and 21 since he has been able to work. So much has happened. As hard as the first ten or so years were, the last ten have been harder in some ways. I can't speak for him other than the obvious pain he is in all the time, the constant fatigue, and depression. As for me, I feel so much. For a long time, I felt guilty for having any type of negative feelings toward the disease and toward him, but I've also learned to cut myself some slack. No, I am not in pain 24-7 like he is, no, I am not on a ton of medications and I don't have a slew of other health issues like he does. I do however have feelings and I have a right to them. This may be the disease that he was diagnosed with but it does affect both of us, just in different ways. I'm tired! For fifteen or more years I have worked 2 or 3 jobs to keep us afloat. I try to spend as much time with our grandchildren as they are my greatest joys but I'm robbed of that as well because not only are they busy in their own lives, I usually get errands like grocery shopping and laundry done on the weekends and before I know it, the weekend is over and back to work I go. I don't sleep well. I often wake up to my own insomnia and his occasional yelling out in his sleep. When the alarm goes off in the wee hours of the morning I lay there and watch his stomach to make sure it'll rise. My biggest fear is finding him dead. Then when I'm at work, I think about him dying in his sleep, falling, and being stuck on the floor (this has happened before) because he is very unsteady and almost always leaves his phone out of reach.I don't know if I would call these feelings, feelings of worry. I try not to worry because I truly trust God's plan for our lives no matter what. I know that worrying is a waste of time and energy and a lack of faith. Whether it's worry of just thought, it's nagging and wearing.

Many times I feel alone, I have had to grieve the physical loss of our marriage. I didn't think it meant that much but once our physical togetherness became a thing off the past, I truly felt the loss of intimacy. I miss him holding me. I am finally after a few years, coming to terms with it. I had to get through the anger, the resentment, and the sadness. Now we barely "date" anymore. He hardly ever feels well enough to go anywhere and his night vision is not what it used to be. Our friendships or at least friend get-togethers are few and far between. I get it, I suppose to others we are boring. Most want to go out to dinner or to drink and listen to a band. In our case A.S. dictates our lives. He is often in too much pain to socialize or sit in low seats in a club and as I mentioned, night driving is difficult. Because of his pain, he often moans and groans, much louder than he realizes and I think that makes others feel uncomfortable. I do understand the loss of friendships/fellowship, but even though I understand it, it still hurts. It almost feels like how friendships drift apart when a couple gets divorced or one of the couples has a baby and the others are still in party mode. I do miss parts of the old "us" and I also feel like I have lost my identity. I don't regret my vows and although fulfilling them at the beginning of this A.S. journey was out of obligation, it is now an honor in a way. I do think I have caretaker burnout in a lot of ways, it seems it's all I do is take care of others whether at my job, home, my extended family, or whatever, but at the same time I feel so blessed and grateful that I still have him here, this side of Heaven because as hard as it can be, as tired or burned out as I get, I still get to enjoy the little things we share, the stupid dad jokes, the laughs and the tears. Even though this disease affects us differently, we are doing it together. During the hardest trials instead of retreating into our corners of despair as we had back then, we have pretty much been facing this uphill battle together as a united front and it is much easier knowing God is with us every step of the way.