Despite Primary Biliary Cholangitis, Their Love Goes On
Holidays. Weddings. Anniversaries. Special Occasions. These are often the most joyous moments of our life. But liver disease can make it difficult to fully participate. Recently we received photos shown here of PBC patient Ivette Williams and her husband Charles on their 30th Anniversary.
This December, we decided to share their anniversary experience with you for two reasons. First, we enjoy a good love story. Second, we understand that for health reasons, many of our readers may need to decline holiday invitations. That can feel isolating and frustrating. So, we hope that Ivette’s careful planning for her celebration provides hope to others. Even in the face of extreme fatigue, you will find joy in the New Year.
My husband convinced me to go to Alaska for our 30th anniversary. I had my doubts because of my health, but in retrospect I do not regret it for a moment. We had a balcony so when I woke up the next day and stepped out it was surreal. The cool breeze, crisp air, ocean waves, dark sky, glaciers in the distance — it was picture perfect. The only thing more perfect would have been if I was not already so tired after waking up. There were deck chairs so I sat as my husband took photos and we drank our coffee. It’s probably one of my many favorite memories watching how excited he was taking pictures of humpback whales in the distance.
The day of our big event, our 30th anniversary and the ship’s formal night, my husband helped me get dressed, put on my shoes to get ready for our event. Highlight was our private photo shoot. It was so much fun. It cost us, but it was worth every penny. We had a ball. I used up all my spoons that day, but I was so happy. Fatigue was starting to kick in, but it was our special day.
PBC fatigue is indescribable at times, but sometimes you can push through it, like a car stuck in the snow with its wheels turning, eventually you will get out, even if for a moment until the next snow mound. One day at a time.
People still don’t fully understand that a person may look good on the outside and still be so sick and struggling with this disease, PBC. For instance, we received many compliments on our formal cruise photo. Some people assumed Ivette felt better because she looked so good, but what they didn’t know was that it took all day resting and planning for this day to get ready. I helped her get dressed, put on her shoes and we were off to our first photo shoot for our 30th anniversary. We had a great time and it shows. I know people mean well and I don’t take it the wrong way. I understand it’s just an ongoing process of continuing to spread awareness of PBC and all it entails, inside and out. The fatigue is the worst part and hardest to manage, and may lead to depression, even in the strongest of individuals. It is not a weakness. Patients with PBC endure much more than people know, they live with it day in and day out, as do their families.
As Ivette’s husband, I am there for her unconditionally and she knows that. She has my love & support always. This involves my taking on more of the cleaning, cooking, shopping, reminders, finances, and most importantly listening. I don’t mind doing laundry, she likes folding because she can fold in bed, so we share some chores. I will shop and she helps me put the groceries away. We cook together sometimes, I do the grilling and she prepares a side dish. She helps out as her energy allows.
In any relationship listening to each other and being honest is important. Playing a support role in the relationship, I find that listening helps me better understand the degree of a bad day Ivette may be having. Every day can be a bad day with this disease, but to what degree will vary from day to day. Their symptoms can come on so suddenly. It’s like the flip of a light switch.
Ivette and I may be dressed for dinner and about to head out in 5 min., when suddenly she succumbs to the exhaustion and I find her asleep. It’s not a restorative sleep. She wakes up feeling fatigued and weak. She will put on a strong face so we can go somewhere, but I can still see it. Sometimes it works, sometimes it doesn’t. We take it one day at a time, as she says. I’ll pick up dinner instead and we eat in. No big deal. You adapt. That’s love.
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