When Chronic Illness Changes the Person You Married

When my husband and I got married in 2005, we were all bright-eyed and bushy-tailed. We had a very traditional wedding, with traditional vows: “in sickness and in health, for richer or poorer, etc.” But never in a million years did we ever believe that these vows would be put to the ultimate test eight years into our marriage.

My husband and I were best friends before we ever became anything more. We told each other everything. He was exactly what I was looking for in a spouse. But we both were in committed relationships when we met in graduate school. So we settled for best friends, study and drinking buddies. It was about a year into our friendship (and my last boyfriend was long gone) that I finally got up enough courage to tell him how I felt. To my surprise, he felt the same way; from that point forward we were inseparable. We only dated three months before becoming engaged, and less than a year after that we were married. We knew we were destined to be together, living adventures by each other’s sides. He is my soul mate — my person who I would do anything for.

We spent the first half of our marriage living the dream — being young, finally having some money and able to do things. We had no strings tying us down. We traveled, and even decided on a whim to pick up and leave the South for the West coast, for a truly amazing adventure.

It was a year and half after we moved to Oregon that I became sick. Our entire family lived in the Southeast, so we clung to each other for support. This experience ultimately made us stronger as a couple. But as time went on and the illness lingered it began to grind us down; it became harder and harder to cling to each other.

As I got sicker, and the prospect of neurosurgery was on the horizon, we were filled with so much hope. This surgery would fix me and I would be well again. I could be me again. But the surgery came and went and all the recovery that followed it. And yet I still wasn’t well. The fractures in our strong foundation begin to surface around the time of my second spinal surgery. We were certain that this surgery would “fix” me — and poof my chronic migraines would go away.

It was at this point in our marriage and life that I distinctly remember thinking, so this is what our vows meant “in sickness and in health”— not just when you get a cold or are running a fever. But the kind of sickness that takes your soul and drastically changes the person you once were… the person that your husband had married. Our wedding vows were being stretched to the ultimate limit during these four years of utter hell. I remember having a conversation one day about how we had never imagined that the “in sickness and in health” portion of our vows would occur at such a young age. We had both assumed that portion of our marriage would take place much later in life, when we were closer to death.

Between the chronic migraine, pain from spinal surgeries and the desire to have children, we pressed forward with our lives to endure another deeply emotional process of IVF. By this point we had been “trying” for almost eight years with no pregnancy. We knew we needed an intervention, and we found one with an amazing fertility clinic. Just when we felt like nothing in our lives was going right, we had our first round of IVF (just six months after my last spinal surgery), and became pregnant with a baby boy. A miracle by all sense of the word. We believed maybe our bad luck was over and we could return to our “life plans” of raising a family and doing all the things we love with our son.

But God had other plans for us — my husband was offered a job we couldn’t turn down while I was five and a half months pregnant. So in the midst of packing our home, leaving our dear friends and defending a dissertation to complete my Ph.D, we moved back south. Truly believing this would be our next chapter. The new beginning we had hoped and dreamed of for so long. A chance to get back to “us” again. Something we both so desperately craved.

But to our surprise, the final surgery did not “cure” me of my attacks — if anything the attacks became worse and more intense after the birth of our son. The attacks intensified so much it is difficult for me to put into words the amount of daily pain I was living in. It wasn’t just the physical pain reeking havoc on me, but the mental and emotional pain.

Here I was a new mom, in a new town, with no support system and essentially unable to care for my “miracle” baby’s basic needs. I lived my life in a dark room. Family from all over the South had to swoop in and help us. We were a quickly sinking ship. My dear sweet husband was doing all he could to help. But being the only income for our family, he was constantly busy with work and helping out at home when he could. Our relationship at this point was nothing more than two ships passing in the night. I could barely care for myself, let alone a newborn and save enough “spoons” for my husband. I quickly slipped into a deep depression — why would a God who loves us so much give us a baby who I could not care for, and place us in a situation such as this.

All of this changed when I was presented with an opportunity to attend an inpatient hospital program for chronic migraine. It’s been one year since I got to push the reset button on my life. I was fortunate enough to have a headache specialist who deeply cared for me and my well-being and sent me to an inpatient hospital program to try to come up with some sort of management plan for me, so that I could have some sort of a life. When I entered the program in late December 2018 I was a shell of a person I once had been — I was depressed, under weight and living at daily pain levels of five out of five. I was an utter mess.

Thankfully, the inpatient program was able to help to put my train back on the tracks and provide me with lots of tools for my tool belt to manage and triage attacks. The reality is that this is likely my forever. It has taken me some time to come to terms with that idea — and how can I still be me and live inside the confides of this disease.

The transition has not been smooth for my husband and I. I am going to be honest, our marriage has basically seen more in the last six years than some see in a lifetime. But how do we recover from this? How do we learn to love the new versions of ourselves? Neither one of us is the person who entered into this union 15 years ago. The words that keep coming to me are: Where do we go from here? How can we learn to love each other as the people we are now and still live out the dreams we set forth 15 years ago?

I was listening to a podcast earlier today with Katherine and Jay Wolf (if you have not heard of them immediately stop what you are doing and google them) — they are a truly amazing example of a complicated, but ever so sweet marriage. Here’s a brief synopsis of their lives: college sweethearts, and Katherine experienced a massive brain stem stroke at age 26. They had only been married a few years when this occurred, and they had a 6-month-old baby. Again, their story is amazing — go read it. Their first book, “Hope Heals,” really opened my eyes to what living life completely different than you ever imagined could look like and how wonderful it could be despite having a chronic condition.

What Jay Wolf said in this podcast resonated with me. He said that essentially after Katherine was home they had to look at each other and make the decision of how to love a person who they barely knew. After such a horrific trauma neither Katherine nor Jay would ever be the same people they were before. Chronic illness has a way of doing this to people.

This is the point we are at right now in our relationship — we’ve decided divorce is off the table — but how can we look at each other and make the decision to love the person standing in front of us, despite all the years of hurt and trauma. We are in a place where we really do not know much about each other anymore — which breaks my heart — we as a couple have lost sight of our vows and why they are important to us. I love my husband with all my heart, and as time goes by and I get stronger and able to do more things, I know things will get better between us; but some days right now — it’s just hard. Its not just hard — it’s damn hard.

Living behind the veil of a chronic disease does more than destroy your body, dreams, careers, relationships. But it can also, if you let it, destroy your marriage. I am a fighter and I am not going to let this marriage slip away without a fight. I fought hard for my health, my surgeries, my son and now my healing. There is no way in hell I am going to let this ugly disease take my love. I recognize the road we face is long and painful — probably having to relive some of the hurtful things we have said to one another, or felt towards one another, which are all normal reactions to a situation such as this.

I share with you my story because I believe there are others who are managing similar situations. That they too are unsure where to go to next, and by bringing light to this situation we can begin the healing process associated with it. This is the real, raw, unfiltered life with chronic illness. It’s messy and beautiful all at once.

I honestly believe there is not enough written on this aspect of chronic illness. Yes, the patient is the one in the pain — but so is the caretaker/husband/partner. They deserve support as much as the person who is enduring the illness. Not only are they caring for someone who feels awful; they are often holding down a job and trying to care for additional responsibilities.

I hope what you take from this story is sincere appreciation for all the caregivers in your life — and for all the hard work that both the patient and the caregiver have to put in to continue to make the relationship keep going.

Follow this journey on The Mindful Migraineur