How My Wife and I Support Each Other Through Chronic Illness

Howard Chang and his wife Lori found that being open about their chronic conditions brought them closer together.

Lori and I took this picture at the spot we got engaged in 1993 near Ghiradelli Square in San Francisco. It’s one of my favorite recent pictures of us together.

Happy Valentine’s Day to my dear wife, Lori! I can’t believe we met about 25 years ago at U.C. Davis as undergraduates. We bonded very quickly over the experiences of living with lifelong health condtions. Those health conditions persist to this day, with a few added to the picture as we become middle-aged. I would even say that psoriasis helped me find my wife

I wrote the following article for The Itch to Beat Psoriasis on Everyday Health a couple years ago on ways to support a loved one with chronic illness. I’m adding it here below as a reminder on Valentine’s Day of how far we have come through each other’s support and care.

 —————–

3 Ways to Support a Loved One With Chronic Illness

Finding the perfect gift for my wife, Lori, is always tricky. That’s because it’s not easy to express how much she means to me. She’s stood by as my main support through everything for more than 20 years, including living with a guy who has severe psoriasis.

As a minister, I officiate weddings and work closely with couples preparing for marriage. I always tell them that the center of the ceremony is the vows. The vow to love “in sickness and in health until death do us part” strikes me as especially solemn.

Many young couples sitting across from me do not truly comprehend the impact “in sickness” can have on their future lives. I know that Lori and I didn’t when we married in our early- and mid-twenties.

We hit it off immediately when we met as college students at the University of California, Davis. The two of us could speak for hours about anything and everything. We could especially relate on so many levels when talking about living with serious health conditions.

Lori was born with spina bifida, a neural tube defect that leaves the spinal cord and nerves open to damage. Doctors call hers a one-in-a-million case thanks to successful neurosurgery a few hours after birth. The condition did leave her with incontinence and neuromuscular weakness, but it could’ve left her incapacitated in a wheelchair.

The two of us could speak for hours about anything and everything. We could especially relate on so many levels when talking about living with serious health conditions.

Every year, I accompanied Lori to an all-morning spina bifida clinic. She stayed in an exam room while medical providers from nine different specialities, including neurology, urology, and nursing, checked her. After lunch, they discussed the patient’s condition and gave recommendations for follow-up.

During one visit, her worsening incontinence took center stage. The doctors and nurses couldn’t find a solution, suggesting possible surgery. I felt helpless as I witnessed her daily struggle trying to work and be a mom while emotionally frustrated by her condition. It took years to figure out how to best manage the incontinence, though no surgery was necessary.

My psoriasis also posed its challenges for Lori. She didn’t really understand or have much knowledge about the condition when we met, or during the early years of our marriage.

Lori admits she thought it was just a manageable itchy rash … nothing much to worry about. It would flare up at times, but there was oral medication, topical treatments, and dermatology appointments to get through it. Besides, Lori’s mom was facing terminal cancer, and the ensuing family drama after her death definitely took priority.

On the journey, Lori and I learned how to better support each other while managing our own anxieties, fears, and frustrations. Drawing from our experience, we brainstormed a few tips for people in support roles as they care for the most important people in their lives. Continue reading →