“So, I have this weird thing…”
That’s how Jaime starts explaining her rare health condition to new people. She then goes on to tell them, “It starts with bumps in the armpit that hurt immensely and swell up like cysts. Then they burst and smell horrible. I can’t help the smell, so please don’t hate me!”
Jaime has Hidradenitis Suppurativa. That’s pronounced hi-drad-uh-NIE-tis sup-yoo-ruh-TEE-vuh in case you’re wondering.
What is Hidradenitis Suppurativa?
Hidradenitis Suppurativa or “HS” is a chronic skin condition characterized by small lumps beneath the skin that are painful and may break open to release a foul-smelling pus. Commonly affected areas include the armpits, groin, buttocks, and breasts. In some cases, “tunnels” form beneath the skin connecting the lumps.
According to the Mayo Clinic, HS is thought to originate in the hair follicles, though the exact cause of its symptoms is unknown. Contributing factors that lead to HS are also unclear.
Sunday, an HS sufferer, describes it like this:
“The flare-ups come on quite suddenly. For instance, on a Monday I might notice something not painful and pea-sized. Tuesday it will be on a Pain Scale 3 (annoying and tender) the size of an almond. Wednesday a pain level of 7 (burning, throbbing, sensitive to any pressure and movement) and the size of a large grape. By Thursday the pain will be excruciating if no drainage has been achieved the swelling may be the size of a walnut in the shell. The pressure is immense and the entire surrounding area by about 3 inches around is intolerable to movement of any kind.
“It is excruciating. This will last an average of three days and, depending on the location, during that time I will find it difficult to shower, brush my hair and teeth, get dressed, use the toilet, and impossible to go to work, cook, do laundry or socialize.”
While Sunday and Jaime describe their Hidradenitis Suppurativa matter-of-factly, it’s sometimes hard for people with HS to talk openly about their condition. That’s why we decided to call on individuals within our community and on social media to share what life with Hidradenitis Suppurativa feels like for them.
Here’s what real people living with Hidradenitis Suppurativa want you to know about it:
1. HS affects daily life in both small and profound ways.
People living with HS often experience chronic pain, mobility issues, limited clothing options, and even social isolation. As a result, everything from small, everyday tasks to important social needs are difficult to accomplish or are left unmet.
“I have limited mobility, and I had to leave my job as a police officer. It is difficult to find clothes because sometimes I may discharge fluids that may seep through clothing.” – Robert
“I am currently a disabled veteran. I have had several surgeries but HS still affects my everyday life. I can’t do any type of activity more than a few hours before the pain and rawness start. I stay in bed mostly.” – Anon
“It changes the way you dress. If you have to wear light clothing the drainage makes it very difficult to do so. You have to have medical wound dressing supplies on standby just in case. It’s important to let your bosses know about it just in case you have to run to an emergency dermatologist appointment, and that can be hard until you accept things.” – Rob
“It’s difficult. My everyday activities are limited (such as holding my child up above my head, holding up my arm to change a lightbulb or to get a box, etc.) and sometimes I’m completely unable to complete those tasks, or even manage to get out of bed.” – Jade Ivy
“All daily activities have to be scheduled around dressing changes. Most of my daily life is spent going to appointments or staying in my house so I don’t share my odors with others.” – Robbie
“On a daily basis I’m challenged to make it through a work day without breaking down in tears from the pain I’m trying to hide.” – Sunday
“Living with HS makes everyday tasks difficult. From sweeping the floor to putting on clothes or just moving around is unbearable at times. [There is] constant pain and no relief. That’s just the physical problems. Mentally you’re wondering what you did wrong.” – ShaRonda
2. HS can be an isolating and lonely condition.
Open, leaking wounds are not only painful and uncomfortable, but they often create a barrier between people with HS and the people around them. Many with HS not only struggle to live a normal life, but they do it in isolation.
“I don’t go out of my home unless it’s to go to doctors’ appointments. Many times when family comes over I retreat to my room so I don’t have to put on more clothes making me uncomfortable.” – Robert
“Not knowing others with the condition isolates the way you think sometimes because you can’t relate to anyone and they won’t understand how it affects you.” – Rob
“Living with this disease makes it extremely difficult to be open and vulnerable to [new] individuals as you never know how they are going to react to your skin condition. So you isolate yourself or only deal with those who know you very deeply in person. It’s hard to engage in new relationships [because] the fear of someone seeing you as disgusting always looms over your head.” – Sabrina
“ [I have] to worry about my social life. I’m still very young and it’s hurtful to see friends out having so much fun and not [being] able to because I’m recovering from surgery or a lump is growing in size by the second and I can barely walk or move my arm. It truly affects me in every way possible.” – Aaliyah
3. Hidradenitis Suppurativa can lead to depression and anxiety.
Living with the chronic pain and isolation that go hand-in-hand with HS is a tremendous burden. Naturally, many with HS report feelings of depression and anxiety.
“It’s depressing. You feel alone, people offer help and, though they mean well, it means nothing to you as it is no help.” – Jade Ivy
“I’m very depressed, anxious, frustrated, and hopeless [because] there is no cure, [and] there is nothing I can do about it.” – Robbie
“It’s a constant fight because you don’t know what you want out of life anymore. You want relationships but are scared this condition or disease will run people off. You literally have to fight yourself not to fall into depression. You have to have a strong faith in God to survive this illness; even then you still have trying days and times.” – ShaRonda
4. Having supportive friends, family and coworkers makes a huge difference for HS patients
When a life is devastatingly altered by chronic pain and illness, the support one receives from friends and family is all but essential. While some with HS find the support they need, many more have messages for the people in their lives:
“I am blessed with a small supportive group of close friends and family that understand.” – Sunday
“I wish that others really knew that this disease is not because I have bad hygiene practices. It is because of the way my body functions. Also, I wish that they knew that my scars were a sign of healing and not seeing me as someone who is disgusting.” – Sabrina
“I have home health and family/friends come in every day for bandage changes and cleaning. I have areas set up in bathroom and bedroom with medical supplies for these people to use.” – Robbie
“I want them to understand that I don’t go out or walk a lot because [of my HS]. I’m not lazy like they think. It’s difficult for me and I become discouraged from their comments, so I find it easier just to stay home. It sucks because before [my HS] got worse I used to be a very outgoing guy.” – Robert
“I wish they knew I’m glad it’s me and not them because I would not want this for anyone. I would not want to see them suffering. I want them to know there are days that I just can’t suit up and show up for life. I don’t know what prevents it. I don’t know what triggers it. I am doing the best I can.” – Sunday
“I’m sure there are thousands just like me who have kept HS a secret. I wish this disease were better known, and had the same public information given out that famous diseases, such as cancer, are given. With the help of a very knowledgeable dermatologist I was able to get my life back.” – Lou
Self-care tips for those living with Hidradenitis Suppurativa
Good self-care is a challenge for many people and it can be especially challenging for those with Hidradenitis Suppurativa. It can also be an important part of the healing and prevention process. Self-care is unique for everyone. Below are some ideas from the people who shared with us:
“Meditation, and see doctors!” – Anon
“Search for online resources and social media groups to give you advice and suggestions for living with HS.” – Pedro
“Try change of diet and warm compresses.” – Robert
“Always keep the wounds protected. [Take] hot showers.” – Anon
“Find ways to get comfortable. HS robs you of your ability to be comfortable while you are going about your day to day life.” – Anon
“Find a good dermatologist and to be patient.” – Anon
“Tea tree oil products help with healing. Drink Noni juice.” – Anon
“Stay clean, not because it gets worse based on hygiene, but because it does make you feel better. Baby wipes and witch hazel are a blessing. Vicks helps the pain. Don’t stress over the little things in life because that makes it worse. Stress always makes it worse.” – Jade Ivy
“Keep the affected areas clean and dry. Stay strong.” – Corrin
“Honestly, trial and error is the only thing that works. What works for others may not work for you. Research the condition for yourself and don’t be afraid to tell the doctor, ‘no,’ to some treatments. I’ve learned some treatments were not for me. Re-evaluate your eating habits, exercise habits and stress. These things will work against this condition sometimes.” – ShaRonda
“Laugh often and love yourself as much as you can. This is a disease that you did not bring on yourself and thus it is not your fault. Also, do you very best to open up to those who are closest to you so that they can begin to truly understand more about this disease and how [it] affects you. Be sure to go out at least twice a month to do something fun for yourself even if it’s as simple as walking through the park.” – Sabrina