Wife of a Chronic Illness Sufferer

Written by Dana J.
Published on January 23, 2019
Chronic Illness | Marriage
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Being the wife of chronic illness sufferer comes with struggles. Primary Sclerosing Cholangitis (PSC) effects the biliary ducts connected to the liver and has it's own trials. Still there is always hope.

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I started writing poems in college while I was getting my bachelor’s degree. They are written from the heart and are meant to encourage and bring hope. These poems have been hidden away in a drawer since college and I’m wanting to dust them off and offer them to others as a form of comfort and commiseration.

You are not alone as you go through your struggles! Others have been there and are currently there. I’ve created this Poem Library to help spread that hope of appreciation of where you are in your struggle.

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That’s me. Well, part of me. There are a lot of parts to who I am as a person. One part, a new/confusing/trying to be courageous part, is the wife of a chronic illness sufferer.

My husband, Sean, and I were married on a breathtaking winter day in March of 2018. About ten months prior Sean was diagnosed with Primary Sclerosing Cholangitis (PSC).

Choosing to Live with PSC

Lots of questions, right? What is PSC? How is PSC different from other chronic illnesses? Is there a way to fix it? What does Sean’s diagnosis mean for his future? What does it mean for our future? What about our plans…our dreams? Can you plan a future with a chronic illness?

  • PSC affects the bile ducts of the liver
  • Bile ducts in PSC patients are too skinny to allow bile and other toxins to leave the liver/body system properly
  • Leads to cirrhosis of the liver
  • Side effects:
    1. Itchy skin
    2. Jaundice skin and eyes
    3. Internal Infections (a.k.a extended inpatient stays)
    4. An eventual liver transplant may be necessary (*in our case it’s definitely appearing to be necessary)

My first thought bubble was: “Ok. A chronic illness. At least it’s not cancer*. We can figure this out. We CAN make this work.”

Then I began reading the results of my Google search. It was discouraging at times, but I still fought to be internally optimistic…or maybe I was in denial…I go back and forth on those two.
*Cancer seems more immediate and therefore more dangerous to me…just my opinion though.

There is hope. Always.

It’s been about two years since Sean was diagnosed with PSC and it’s been almost a year since our wedding (YAY US!!). I’m confident in saying that we have both individually and as a couple done well thus far on our journey together. We’ve answered a few of those questions for ourselves. We’ve also added about 563 more to that list, still unanswered.

There will always be unanswered questions. We aren’t meant to know it all. In my belief, however frustrating that can be at times, that’s just the way it’s supposed to be.

That’s the encouraging note to end this post on…

We don’t need to have answers to all of the questions. We won’t. We can’t. It’s impossible. THAT’S A GOOD THING! Our lives are always evolving. God is constantly working. He never sleeps. So the questions will keep coming. The answers will keep changing. We will keep hoping and trusting that there is more to life than just the questioning.

Never stop working to find the hope. Where have you found it recently?

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There is hope. Always.

It’s been about six years since Sean was diagnosed with PSC and it’s been almost five years, to the day, since we got married (YAY US!!). AND, we are currently 12 days post-transplant surgery. How crazy is that!?! (As of, 3/11/23)

It has been nothing short of a roller coaster ride. Getting put on the liver transplant waiting list. Doing endless social media posts in search of a living donor. Praying against infections. Praying for a donor to be found. Hearing that a donor is going through testing only to find out after months of anticipation that they are not a viable match…3 times!

After over a year of waiting, the surgery was scheduled and we were prepared to go through this life-saving process. The long journey of recovery has now begun. <3

I’m confident in saying that Sean and I have grown both as individuals and as a couple throughout this whole process, but we definitely still have some more growing to do. We are just getting started on our lives together and we are excited about what is to come for us.

We anticipate that this next year will be one filled with doctor’s appointments, unexpected hospital in-patient stays, and potentially stressful travel time away from our daughter (our least favorite part.)

But, we see hope as we’ve never seen it before. We feel like we can dream again.

I encourage you to have hope and to let yourself dream regardless of what stage or struggle you are currently in. I’m not assuming I can understand where you are or how you are feeling…and I know that sometimes hope just feels absolutely impossible. But, if you happen to get even just the tiniest glimpse of it grab it, hold tight to it. Because there is hope. Always. 

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