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Getting through the morning has become more complicated since I was diagnosed withhidradenitis suppurativaseven years ago.
Sebastian / Adobe Stock
I usually wake up to find pus or blood on my pillow and/or sheets.
I might then spend an hour in my closet trying to figure out what to wear.
I might have a breakdown in my closet while my dog stares at me, waiting for his walk.
Then I forge on with my day.
(They do know hidradenitis suppurativa is not a result of poor hygiene or infection.)
In my experience, Ive found that my hidradenitis suppurativa tends to get worse before my period.
(Symptoms sometimes become less intense after menopause.)
I was 22 when I started to show symptoms.
Hidradenitis suppurativa takes a toll on both my mental and physical health.
I know Im not alone in often feeling ashamed, anxious, angry, and sad.
We hope it helps.
Find a therapist, if it’s possible for you to.
This disease has taken a major toll on mymental health.
Going totherapyweekly gives me space to talk about my emotions.
Take gentle yoga classes.
Moving my body is really important to me, but exercise can exacerbate hidradenitis suppurativa symptoms.
This is especially true for high-intensity activities, like cycling.
I finally talked to my doctor, who suggested I try something else.
For some timeI struggled to find an activity that didnt make me feel worse.
I learned how to take breaks and go at my own pace.
I left that class on such a high.
Ive beenmeditatingon a daily basis for six months, and Ive found it to be so beneficial.
It helps me get in touch with my body and become more attuned to its needs.
If Im feeling overly anxious or in a lot of pain, Ill meditate to ground myself.
It reminds me that I am breathing and will be okay.
When I started, I would just do a quick five-minute session.
Ive also been able to find drop-in, donation-based classes all over the city.
This is a great way to give it a try before committing or spending a lot of money.
Connect with others who have the condition.
I first shared my story in 2017, and I found the response to be overwhelmingly positive.
When Im feeling really isolated, Ill DM with other people who have hidradenitis on Instagram.
All of this reminds me that I am not fighting this battle by myself.
It might even help to connect with someone who has another chronic illness.
I find myself in deep conversations with her often, and they help keep me going.
Surround yourself with a strong support system.
They help with both my emotional and physical needs.
My dermatologist is also a crucial part of my support system and continues to offer support and encouragement.
Finding a specialist who is knowledgeable about hidradenitis suppurativa is so important.
There is nothing weak about asking for help, she says.
On the contrary, there is extreme strength in vulnerability.
Use very gentle cleansers and moisturizers.
Then my dermatologist recommended that I use an antibacterial and antimicrobial soap calledHibiclensevery time I shower.
It contains a 4% chlorhexidine gluconate solution, which helps reduce the risk of infection.
I also just feel really clean and good after I use it because it doesnt irritate my condition.
TheMayo Clinicalso recommends using antibiotic or antimicrobial moisturizers for extra protection.
Create a wardrobe full of comfy clothes.
Having the right clothes is so important for ensuring that I feel comfortable and confident.
I have tons ofjoggers, sweatshirts with fun sayings, tank tops, and looser shirts too.
I love shopping at Old Navy, Target, Madewell, and Walmart.
8. venture to identify potential food triggers.
But as she points out, just because they were my trigger doesn’t mean they are yours.
Cooking gives me a real sense of accomplishment.
Use hot water or a wet, warm compress to relieve itching and pain.
Starla M., 33, runs hot water on areas of her body that are itchy.
Find a hobby you’re free to do even on your worst days.
Im also obsessed with antiques and spend a lot of downtime surfing the web for amazing treasures.
I find this kind of distraction to be really helpful as well.
These are all things I can do on the days when Im stuck in bed or on the couch.
It can feel so lonely at times, but know you are not alone on this journey.
