what its like: to have a spouse with a chronic illness.

Today’s What It’s Like feature is honest, real, and so informational. It gives us an inside look at what it’s like to be the support person in a marriage where a spouse is suffering from a chronic illness. I am so thankful for my friend Abby for sharing so beautifully about her journey as a wife supporting her husband and it helps me better support others who may find themselves in a similar place.

Each piece I read in this series reminds me of the journey that each person is living and the insurmountable amounts of grace we should be giving our fellow humans each day, as everyone is going through something. Is anyone else reminded of that too?

Abby, thank you for sharing with us today. We will be praying for Reid and your future!

“Your husband’s bile ducts are more blocked that we expected. It’s time to get listed for a liver transplant. Without a transplant, he has a 90+% chance of developing bile duct cancer.” WAIT, WHAT? How did we get here??

Let me back up a couple of years. In May of 2014 my husband, Reid, and I were honeymooning in Santorini, Greece and he started having some stomach pains. Being the wonderful new wife that I was, I told him to suck it up because we were on our honeymoon and didn’t have time to be sick. When we got back home, we visited a gastroenterologist, and learned shortly after that he had not one, but two, chronic illnesses. (Yes, I win the “wife of the year” award) Reid was diagnosed with Primary Sclerosing Cholangitis (PSC) and Ulcerative Colitis (UC) in June of 2014. Ever since then, we’ve been on one heck of a roller coaster ride. I always knew when we took the vows “in sickness and in health” that we’d get to that “sickness” part one day, but here we were – 28 years old and three months into our marriage. Time to put those vows to work!

Over the course of the last almost four years, we’ve learned so much. About each other. About his diseases. And most importantly, about how to best care for one another. Having a spouse with a chronic illness is not for the weak, y’all. When he was first diagnosed, the doctor shared that maybe one day he would have to have a liver transplant. And maybe he would develop cancer due to these diseases. Today, he is on the transplant lists in Houston and Indianapolis, and his doctors are watching him super closely as his chances of developing cancer are extremely high.

So what is it like to have a spouse with a chronic illness?

  • Most days people look at him and think (and say) “he looks fine”… but his insides don’t match his outsides. Having a chronic illness does not always show on the outside. This is going to sound terrible, but some days I’m actually glad when he looks sick, because then it’s a little easier for people to understand.
  • I’m constantly wondering what I can be doing to make him better. And often times, the answer is nothing. You learn that there are SO MANY things completely out of your control. As a control freak, this one was very hard for me to grasp.
  • Doctors’ visits and tests are a new normal. Fortunately, I have a flexible job and understanding boss, so I attend every appointment with him. We now have a routine… we discuss our questions on the car ride in, we know which parking garages to park in at the Medical Center, and the receptionists recognize and greet us when we arrive. We know the doctors so well that we are on a first-name basis with their nurses, and I have their numbers programmed into my phone. I have sat alone in a waiting room while he has a procedure, choking back tears, more times than I want to admit.
  • Everyone has advice on how to “fix” him. We have several medical teams at this point… if they don’t have the answer, I don’t think that what worked for your “sister’s boyfriend” who had some stomach pains is going to work for my husband and his chronic illnesses. And this one is hard… because they mean so well. They truly do.
  • We struggle not to let his illnesses control our conversations, our marriage, and our life. We recently had a date night where we didn’t discuss anything medical – and that was a big deal.
  • We have learned not to sweat the small stuff. That’s so cliché, but it’s so true. We don’t fight about who does the dishes or takes out the trash… that’s so petty compared to the major medical decisions we have to make together.
  • Through sharing our story and our struggles, we’ve gained a crazy amount of support and we’ve seen our support system come out in full force! While they may not know first-hand what we’re going through, we are super super (super!) fortunate that we have the most compassionate friends and family around. That’s definitely been a “silver lining” to all of this.
  • We hesitate to make plans. I’m a planner, but we never know how my husband is going to feel from day to day. Some days he’s exhausted, and some days he’s in pain. We try not miss the important things in life, but some days he just can’t do it. And that’s okay.
  • We experience some really high “highs” and some really low “lows”. I referenced a roller coaster ride, but most days I really feel like that. We may get a call that there’s a potential directed liver donation for him, and we get our hopes up thinking this is it. And then we find out the liver was already matched with someone else. We may hear that everything is stable, and then the last test results shows more issues.
  • We constantly worry about the next test results. My husband has tests every month, some months every week. And we never know what those tests will hold. There’s seriously no real way to predict whether we’ll get good news or bad. So we keep ourselves busy while we wait, and hope and pray for the best outcome possible.
  • But on that note, we’re also realistic. We know that it’s likely that we’ll get a call one day that they’ve found cancer. And we talk about death, more often than a young couple should. But we have amazingly open communication with one another. And no topic is off limits. We have truly learned to lean on each other as husband and wife.

Sure, having a spouse with a chronic illness is hard. Some days it’s real hard. But it’s not impossible. It’s not unmanageable. I am proud that we have the strongest bond because of what we have done together. We have learned to lean on one another and the support around us!

“I am learning to trust the journey even when I do not understand it.” – Mila Bron

11794172_10101950739270005_7381347908202789157_oAbby is a born and raised Texan who finds solace in sharing her struggles with others. She and her husband, Reid, married in March of 2014 and quickly ran into some significant life challenges. Through infertility, multiple pregnancy losses, and navigating her husbands chronic illnesses, she has discovered her love of blogging and a passion to help others through similar struggles.    You can find her on Instagram at @waiting4ourmiracle and on Facebook at Impatiently Waiting for our Miracles

PS – Don’t miss a thing with this series! Follow along on Facebook and Instagram to catch each of the upcoming stories! I absolutely LOVE connecting with each of you! 

PPS – If you’re ever looking for a devotional on living life while in a waiting season, check out the devotional I co-authored called In the Wait’!

PPPS – Check out the other contributions from this series, including What It’s Like: to experience multiple IVF cyclesraise a child with special needsuse an egg donorbe a DIY-er and home style blogger , be a NICU nurse,  Live fully in singleness while still hoping for marriagesuffer with endometriosis. experience depressionstart a company, have a micro preemie,  lose a parent, and be childless not by choice. Stay tuned for many other amazing topics to come every Tuesday and Friday here!