Sandra Guilbault developed painful lesions under her armpits when she was 16 years old. At the time, Sandra was ashamed to tell anyone about her symptoms—including her family. When she was 18, Sandra finally went to a dermatologist for answers and was diagnosed with hidradenitis suppurativa (H.S.), a chronic condition that causes lumps to form under the skin. Typically these lesions appear in parts of the body where skin rubs together (like the armpits, groin region, under the breasts, or on the butt), according to the Mayo Clinic. Oftentimes the bumps can break open and leak pus; in severe cases the lesions can cause tunnels to form under the skin. All of this can affect every aspect of a person’s life—including their responsibilities as a parent. We asked Sandra to document her life for one week and share what living with hidradenitis suppurativa is like as a mom of two sons. Here is her diary.
Name: Sandra Guilbault
Occupation: Custom frame consultant
Age: 40
Location: Troy, Michigan
Health condition: Hidradenitis suppurativa
8:30 a.m.
Today is Mother’s Day, so I sleep in as much as possible. I typically wake up early to get my kids ready for school, so this is a small luxury.
9:30 a.m.
My husband shares the gifts he got for me at breakfast. This year I received a gift card for a massage, which I’ve always wanted to try but would never purchase for myself. Just a few short years ago, I never would have felt comfortable being topless around a massage therapist who would see my H.S. lesions.
6 p.m.
Every Sunday we order take-out, which is a fun treat for the kids and gives me a break from cooking. My oldest son can’t eat dairy so this week we order barbeque, which everyone in the family enjoys.
7:45 p.m.
I help my two sons wind down for the night and get ready for bed. My ritual includes coercing them to hop in the shower, brush their teeth, and pick out pajamas.
8:30 p.m.
I tuck the kids into bed and ask them what they are looking forward to tomorrow. I turn on the white noise machine, turn off the lights, and wish them sweet dreams.
9 p.m.
I spend some quality time with my husband, and we watch Severance. Our favorite TV shows are a little science fiction-y with a good plot. We enjoy trying to predict what will happen next and discussing our theories.
10 p.m.
Before I go to bed, I get ready for the next day so I don’t need to rush in the morning when I’m trying to get two kids ready for school. Tonight I pick out my workout clothes since I go to the gym in the morning as well as outfits for both my sons.
10:30 p.m.
Now it’s my time to start my evening skin-care routine, which includes using two different prescription topicals: One helps prevent new abscesses from getting worse, and the other helps older abscesses heal. I also take an oral medication to help prevent H.S. flare-ups.
11 p.m.
I read a few pages of a book until I feel sleepy. I find that stress can trigger flare-ups, and my mind is always racing with a list of things I need to do for my family, for my job, and for my volunteer work. I find that reading or listening to audiobooks provides a break from focusing on my stress.
6 a.m.
I wake up, make my bed, and take my first shower of the day. My shower routine revolves around H.S. management. I use inexpensive antibacterial hand soap to wash areas where I typically get flare-ups. Then I use a hand shower attachment to rinse that off and put a benzoyl peroxide wash on any active lesions. I leave this on for the rest of the shower while I wash the rest of my body and hair.
6:45 a.m.
I make my oldest son breakfast, help him gather his school supplies, and make sure that he walks to the bus stop on time.
7:45 a.m.
My nine-year-old wakes up. I make him breakfast and then drive him to school.
8:40 a.m.
It’s gym time! I used to be in so much pain due to H.S. lesions that I couldn’t even shift my weight comfortably—let alone get to the gym. Today is leg day, so I do some deadlifts, leg press, leg extensions, and standing calf raises.
11 a.m.
Today I volunteer a few hours for Hope for H.S., a patient-led nonprofit that I joined eight years ago. Hope for H.S. stemmed from a support group my doctor created for people living with the disease. I joined in 2014 and I, along with others in the group, realized that there is a lot of misinformation about H.S. and not enough treatment options. Rather than wait and hope that things change, we decided to do what we could to advance the cause and created this nonprofit. I get a sense of accomplishment and purpose knowing that I can help others living with the disease.
5:15 p.m.
I start making dinner for my family. Tonight we have spaghetti and meatballs with salad.
6 p.m.
At dinner we play a game called Roses, Thorns, and Buds, which is how we learn about everyone’s day. We each share a rose, which is our favorite thing that happened; a thorn, or our least favorite thing that happened; and a bud, which is something we plan or hope to do.
7 p.m.
It’s a nice evening, so I take a walk around my neighborhood after dinner. I always invite my husband and kids along, but no one joins me tonight. I use the time to catch up on my audiobook.
10 p.m.
After the kids go to bed, I start my nightly routine.
6 a.m.
I wake up, make my bed, shower, get the kids to school, and head to the gym.
8:40 a.m.
Today I’m focusing on my upper body at the gym. I primarily stick to strength training because I actually enjoy it! Plus, many forms of cardio can cause friction, leading to flares.
11 a.m.
I work at a custom frame shop and am on my feet all day. Sitting for a long time can be uncomfortable if I have a flare-up below the belt.
6 p.m.
We play Roses, Thorns, and Buds at dinner again. I had a nice phone call with my mom on my drive to work, so that was my rose for the day.
10 p.m.
I complete my nightly routine after the kids are in bed and I take my daily H.S. medication. This medication has helped reduce the frequency and severity of my flare-ups. I went from having a new lesion about three times a month to maybe one spot per month. Previously my bumps would rupture, scar, and create a tunnel under my skin, but that rarely happens now.
6 a.m.
This morning I discover a new nodule in the shower. I use my handheld shower head to wash off the soap like I always do and am shocked when the pressure from the water hit the nodule. The pain knocked the wind out of me and made me see stars!
8:30 a.m.
I run errands after the kids go to school. Most importantly I call my dermatologist to make an appointment. I am so grateful that I have access to a dermatologist who really understands complex skin conditions like hidradenitis suppurativa.
11 a.m.
Today a coworker showed me a video about changing your diet to improve H.S. I understand that she wants to help, but videos like this only fuel misinformation about H.S. The video shows graphic photos of the most severe cases of H.S. I have tremendous empathy for people who have severe H.S. since my condition was debilitating for many years. But only showing photos of advanced cases makes it harder for people to recognize symptoms in the beginning stages.
7 p.m.
I go on a walk after dinner, and my oldest son joins me. I make sure to ask about his day, how he’s feeling, and how his friends are doing. I think it’s so important to have open communication with my kids so they can talk to me about anything—including if they develop H.S. symptoms. When I got older, I learned that hidradenitis suppurativa may be caused by genetics. After I talked openly about my diagnosis, other people in my family told me they had the condition too.
9 p.m.
I want to take a nice long Epsom salt bath to try to care for the painful spot I discovered this morning, but my bathtub isn’t very clean. I don’t have the energy or bandwidth to scrub it, so I just use my topical creams and take my daily oral medication.
6 a.m.
I wake up and shower, hoping that my daily routine will help the new spot heal. Because so much of my shower routine revolves around H.S. management and feels very “clinical,” I use a nice smelling body wash on the areas not commonly affected by the disease. This helps make showering feel less like work and more something I look forward to.
8:40 a.m.
It’s leg day again! Strength training helps me feel like I’m working with my body and not fighting against it.
9 p.m.
Tonight, my husband offers to give me a massage. After 20 years together, I know this usually leads to intimacy. I let my husband know I’m not up for it by saying, “I’m in pain today.” I think it is so important to let your partner know when you’re in too much pain to be physically close so they don’t take the “rejection” personally. My husband is supportive and has never once been turned off about the appearance of my skin.
6:45 a.m.
It’s a special day! I wake up my now 12-year-old (today is his birthday!) and make him breakfast. We chat about his upcoming party tonight before he heads off to school.
11 a.m.
We are hosting a party for my son, so today is a flurry of activity. After the gym I run errands to pick up decorations and food. Then I clean the house, which is hard because of my flare-up. I limp a bit but power through and make dairy-free ice cream cupcakes, wrap presents, and decorate.
5 p.m.
I worked up such a sweat cleaning the house, so I take some time to rinse off before my son’s party. I know that sweat can trigger a flare-up for me.
6 p.m.
My son has a wonderful time eating all his favorite foods (sushi and pizza without cheese) and playing games with a house full of rambunctious boys. This party is my son’s first sleepover and it makes me remember how self-conscious I felt going to friends’ houses when I had a flare-up as a teen. I sincerely hope that if my children develop H.S., they confide in me so they can get early treatment.
11:30 p.m.
We stay up late because of the slumber party. I can barely keep my eyes open anymore, so I encourage the boys to turn off the TV. They fall asleep within minutes, and my husband and I finally head upstairs to sleep too.
8:30 a.m.
The kids eat cereal for breakfast as they wait for their parents to pick them up.
12 p.m.
I spend most of the day cleaning up after our party. Not long ago I would have needed someone else to reach up overhead and take down the streamers because of my H.S. sores. I am grateful that my condition has improved to the point that I can do things for my family.
4 p.m.
I decompress from all the excitement. Between scrolling puppy videos on my phone, I text fun stories about the party to the moms who sent their sons. I don’t pressure myself to be productive and enjoy some time to myself with no deadlines or expectations.
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