what I want you to know: the loneliness of having a spouse with a chronic health disability

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. This guest post is by an anonymous reader.Photobucket

For better or worse, for richer or poorer, in sickness or in health. We have lived all of these in our almost 19 years of marriage. We’ve loved each other from the time we met in high school. Our relationship was fun, we were friends and then we became family.

Health has been a struggle for my husband for the last 15 years or so. He began having neck pain, which kept him laid up and unavailable many days until he finally had neck fusion. He was on the mend after that and our life moved on.
A few years later his lower back began to hurt. Once again, he was laid up and in chronic pain. Two unsuccessful surgeries were performed on his back that just allowed the pain to return with a vengeance, until I drove him to the hospital and refused to bring him home until they fixed him. His lower back was fused. Again, my husband was laid up, in pain, and not emotionally available. This time it was for months. Add to that the financial pressures I faced managing with minimal income and three children. He healed, and we were in the clear for a while.

Chronic headaches began to be a regular part of his every day. My husband began to lose his spark, but God bless him, if it’s all he did in a day, he got up and put on a good face for work in order to take care of us. After taking a spill while playing with the kids one day in the yard, he suddenly began to have neck pain again and this time it began to extend down his arm. More endless weeks of a husband in pain, irritable, and unavailable were to follow. Guess where we found ourselves next? Surgery. Another fusion in his neck. More time of recovery and living without my partner and my love.
During this time we had been in the process of adopting three children from foster care that had been in our extended family for the past few years. My husband continued to mend, but was never fully himself again, at least not at home, and not to me. The bright spot was that we finally completed our adoption in 2011, and though the headaches were often, his back was feeling good.

Within months of the adoption, my husband began to have distortions in his vision that were becoming increasingly pronounced. He had actually had some problems with spots on his retinas in the past, but no one seemed to know what it was, and he just learned to adapt, but now it was beginning to affect his days and he began to have eye pain. He was finally diagnosed with a disease called Stargardt’s disease. He will slowly lose his vision to the point where he won’t be able to drive anymore, and he will probably be considered legally blind.

You would think at first that my concern would be that he won’t be able to work anymore or be dependent on me, but it’s not that at all. What I want you to know about having a spouse with a chronic health challenge or disability is that it is lonely, and it is all consuming.

It’s really so many of the little things that are taken away much more than the obvious ones. At times it feels almost like I’ve lost him, but he’s still here- because it has changed him tremendously. I have my faith that tells me God will work all things for good, and I believe that, but hanging on until the good is the challenge.

I miss my husband looking in my eyes and really seeing me. I miss small non-verbal cues from across a room. I cringe every time I hold something up to show him or point something out and realize I’m asking him to see what he can’t. I’m sad that I never hear him laugh anymore, and that his calm gentle spirit has been replaced by a troubled, agitated one. I grieve when he is in pain I can feel but am helpless to take away. I anguish each time I see him push himself out the door to work because he wants to continue to serve God and us, but all his body wants to do is close his eyes and sleep. I get angry that he is once again lying down and I am exhausted from single parenting. Again. Then I get angry at myself because it’s not his fault or choice. People will say to go do something nice for myself, take care of myself and I’ll feel better, but nothing can replace what I am missing but a God who comforts and heals.

What I want you to know about having a spouse with a chronic health challenge or disability is that we need your prayers, encouragement, and friendship. When you listen to us vent our grief, fatigue or frustrations, please hear us. Reassure us that it’s ok to have those feelings because we often feel guilty for them. I find it hard to switch to social situations where I’m just supposed to enjoy myself because I’m so used to being on duty, but the last thing I want to do is dump on you so I put on a strong face. Love our children and invest in them where you can because they often step in at home and invest in the family more than the average kid, and they need that encouragement, too. Lastly, offer us your presence. We are often running a family alone.


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