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.
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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.
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Follow my Tremfya journey!
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24 Weeks with Tremfya: A Pattern Emerges
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Embrace the Support Role
I am the problem solver in the family. With Lori, though, I’ve learned that I can’t solve her problems, health or otherwise, however much I want or try to.
A few years ago, our oldest was diagnosed with bipolar disorder and had to go through a series of hospitalizations. That contributed to Lori’s anxiety disorder (a byproduct of living with spina bifida), ramping it up to continual panic attacks. That was a tough time for her that I couldn’t understand.
In my ignorance, I even became impatient with her. Later, I realized what the real source of my frustration was: I had put the pressure of fixing her anxiety on myself.
I am the problem solver in the family. With Lori, though, I’ve learned that I can’t solve her problems, health or otherwise, however much I want or try to.
Lori needed to express her feelings and feel understood by my listening to her. I went to doctor’s appointments with her and made treatment decisions with her. I was in a helping role. Taking the pressure off myself to solve Lori’s problems gave me more freedom to support her.
Take Negative Feelings in Stride
Living with a chronic condition is tough, and every person is going to have times when they feel really down. Taking negative feelings in stride allows you greater capacity to care and stay on an emotional even keel through even the most trying days.
My psoriasis may have seemed pretty routine to Lori at first, and I probably contributed to that by trying to shelter her from some of how it affected me.
The real turning point came in 2005, when I was about 95 percent covered with psoriasis. We went to the dermatology department at the University of California San Francisco to see world renowned psoriasis expert Dr. John Koo. I cried waiting for my appointment with him that day. Lori cried, too.
During that time, Lori recalls going to a friend’s house feeling discouraged and sad. She told her friend that I had been irritable that morning, and that everything she did (cook breakfast, make coffee) seemed to upset me.
When the friend suggested that it might be because my psoriasis was flaring, Lori realized that she was taking my irritation too personally. She needed to separate herself from the real source of my frustration: my skin. Lori remembers coming home that afternoon feeling revitalized and better able to tackle the challenges my psoriasis had created.
Care For Yourself
Supporting someone with a serious health condition can be stressful and feel overwhelming, no matter how strong you are or how well you manage negative feelings. The Mayo Clinic lists a number of signs of caregiver stress, including feeling constantly worried or sad, becoming easily irritated or angry, and feeling tired much of the time.
Each person in a support role needs strategies to manage stress for the long haul. We needed those strategies even more so as we managed our own health conditions at the same time.
Lori learned the importance of cultivating hobbies and interests of her own. By giving herself permission to take the time to do things she enjoyed, she rediscovered her love for film and theater.
Each person in a support role needs strategies to manage stress for the long haul.
Music has always been, and continues to be, a big part of her life. She also discovered the benefits and joys of gardening. Lori realized that taking care of herself was nothing to feel guilty about. If she didn’t make time to refresh herself, she wouldn’t have the patience or energy to take care of anyone else.
Looking back, Lori and I are grateful for everything we’ve experienced together. We promised to love each other, no matter what life threw at us.
No one is going to be perfect at supporting another with challenging health conditions. But keeping a vow is not about being perfect. For us, it’s about friendship and being present. That’s the best gift that we could give each other.
PsoHoward 