The Biggest Lesson I Learned in Marrying Someone With a Chronic Illness

I have known my wife for seven years. They have been hard, wonderful, challenging and fulfilling and I wouldn’t trade them for anything. Throughout our relationship, my wife and I both have quoted the movie “The Crow,” which says “nothing is trivial” because when it comes to a relationship with someone you love, with whom you have to take life a day at a time, nothing is. I wrote a few years ago about being in a relationship with someone who is chronically ill and this is what I’ve learned since — how meeting, loving, dating, marrying and building a life with a woman who has a chronic illness has affected me, her and my views on life and love.

I have always known my wife was chronically ill and in chronic pain; she didn’t lead with that fact but the fact is it is a part of who she is. It has changed how she has to live her life. The only thing that has really changed over the years is the diagnosis and the severity. When we first met, she had been misdiagnosed with fibromyalgia and correctly diagnosed with degenerative back issues, and both caused her daily, constant pain. I decided after hearing about it that knowing more would not only give me a better way to communicate with her but also a better understanding of her. I didn’t realize at the time how important this seemingly simple decision was or how many times I would be remaking it about a lot of different things. The decision was to stand by her, trust her and care enough to learn about her life, what she is feeling and going through day-to-day — either from her or through my own independent research.

From everything I have seen and experienced being the spouse to a chronically ill and pained woman, the primary issue my wife and her chronically ill friends have experienced, above and beyond the pain and comorbidities, is a lack of understanding coupled with a willful desire to fix them and/or cast them aside when they don’t live up to some ridiculous set of predetermined expectations. It is something I have found everyone who isn’t (and even a few who are) chronically ill/pained does, whether they realize it or not, and more than enough people do nothing to change that. I had, for a long time, the desire to fix my wife, to help in some curative way or to be the armchair researcher-turned-savior who finds that random piece of obscure medicine or treatment that would suddenly cure or deeply diminish her pain and symptoms.

That was a hard one to let go of. I searched for a long time, I ignored her when she asked me to stop, told me that if something were to actually come out that works, it would be all over her groups she is part of and I would likely not be the first to hear about it between the two of us. I used to be hurt by this. I finally let go of the active search and the hurt (not that I don’t keep my ears open still) when I realized that the emotion driving me to find this cure, be the armchair researcher/savior and that made it hurt when she asked me to stop was… ego. Ego is a relationship killer in a relationship between two generally healthy individuals and it cuts deeper in a relationship where one of you is constantly hurting and sick. The effects of it are catastrophic and hurtful. In my relationship with my wife, it was my biggest vice. It has fueled and fanned the flames of so many arguments and so many times where I willfully ignored her and thought I not only could but did know better. She had the rest of the entire world telling her that regularly, arguing with her about everything and willfully ignoring her, even and especially doctors.

I’m glad I stopped and even though it took me a long time, I found out with that and with everything else I was doing that was damaging her and our relationship, it’s never too late until it’s too late. Fortunately, for us, it wasn’t too late.

Our relationship has steadily been climbing since I finally decided to abandon my ego and work on strengthening our bond instead of straining it with stubbornness to not change. It took me a long time to recognize that the love we share is unaffected by her illness or pain. Yes, those can inhibit certain aspects of our relationship, definitely, but overall, our love has to do with two things: how much each of us is willing to listen and how much we each contribute. The good parts of our relationship have been tremendously stellar. Beyond words. The bad parts have been painful, to sell it short. Nothing, though, made our relationship really take off until I stopped just listening (which I am still improving on) and started contributing, too.

She contributed and listened with the best of them from the get-go. I didn’t. I had a lot of preconceptions and ego to get out of the way first. Getting rid of my ego and actively contributing was the first time I really went from being a bystander in my own marriage to actually working at making it stronger, instead of just keeping it as static as possible. Prior to that, I was expecting, whether I acknowledged it or not, my wife to strengthen our relationship alone and drive it alone. This carries on like a rowboat on a river with only one side paddling. It goes in circles for a while, never really getting too far ahead before you start heading backwards while the current pushes you closer and closer to the waterfall labelled “Too Late.”

For us, listening has meant doing so without judgment or assumption while contributing means what it says — giving of ourselves, our thoughts, our joys, sorrows, opinions, knowledge, feelings, love and, above all, honesty.

No matter what.

It can be scary being that honest with someone but I saw that if I wanted our love to be stronger than her chronic illness, — stronger than the slow pulling apart it can cause just because of the constant, mind-numbing pain and sickness fighting to invade her world, all while I am sitting by giving her no window into mine which made her feel alone — I not only had to contribute but I had to do it actively and with everything. “Nothing is trivial” means exactly that: I couldn’t hold back anything.

Something I cast aside in mind or heart about myself as “trivial” or “unimportant” while she contributed everything did two things: it told me that not all of me was as important to our shared life as all of her was and it told her she wasn’t important enough to let her decide for herself if she was or wasn’t interested in what I had to say, think, feel or experience. Spoiler: None of it is trivial because when you’re facing down your wife’s illness and pain together, the more you know and trust and love, the more active love you have between you to bring to the battle. So, after seven wonderful, hard, fulfilling, challenging, growth and love-filled years and a correct diagnosis in place of her original misdiagnosis of fibromyalgia (it is actually hypermobile type Ehlers-Danlos syndrome and a few co-morbidities), I have come back around many times to that pearl of wisdom, “Nothing is trivial.”

I have also gained another: Love hard, love often and love her in every action I do and word I speak, no matter what, because love can be stronger if you make it stronger.