Stepping Out Of My Comfort Zone: Isela's Journey With Hidradenitis Suppurativa

The Editorial Team at HSDisease.com is highlighting HS warriors and their journeys in our Voices of the Community interviews. We talked to Isela, and she shared how important it is to fight for the respect all HS warriors deserve.

Editorial Team: How do you tell others about your HS? Is your diagnosis something you share openly or only with those closest to you? Why?

I have a fear of roller coasters, yet I still manage to force myself on one anytime I visit an amusement park. At the highest peak, before the roller coaster drops into oblivion, I feel terrified, nauseous, and filled with instant regret. To me, talking to someone new about HS for the first time incites a similar feeling of riding a roller coaster. At the highest peak, I am worried about their reaction and whether they will still see me the same way. As a rule, I only tell those closest to me about my diagnosis.

Stepping out of my comfort zone

This article is me stepping outside of my comfort zone, similar to forcing myself on a roller coaster. I have struggled to explain HS when I date or make new friends as it is always awkward. I find it can be difficult for people to not only understand the disease but also everything that comes with it – the fatigue, effects on my mental health, and chronic pain are hard for an outsider to understand. Even my closest friends and family don’t truly understand how this affects my day-to-day life.

Although I know HS is not my fault, I still carry some embarrassment. I’ve recently made the effort to be open about my treatment, which is currently Inflectra, but I worry that I am seen by my closest circle as being “too much” or “sickly.” However, the responses from my friends and family have been positive, so I do my best to be more open with others about HS in order to spread awareness. I am hoping that with practice I will be more comfortable being open about my diagnosis.

The financial obstacle

Insurance has to be the worst concept designed by modern humans and the biggest scam of history. The best way I can describe dealing with insurance is talking to a wall and then kicking it with your foot: futile and painful. My least favorite part of HS is fighting with insurance to cover my treatments. I spent 8 weeks just trying to switch from Humira to Inflectra. Recently, my dermatologist went out of network, which means my appointments are now out of my price range.

I have wanted to give up numerous times. How can insurance companies expect patients to go to war with them when they are painfully curled up in bed unable to walk? The multiple lab tests, exams, and never-ending paperwork are maddening. Every day there seems to be a new challenge. Admittedly, I have to step away from it all sometimes. This usually means a hiatus from doctor’s appointments and other medical-related appointments or calls. Although my physical health is important, I have to balance my mental health needs as well.

Push for the respect you deserve

My job requires me to advocate for others, but HS requires the patient to be their own advocates. First, medical systems do not communicate, share records, or work for you. Push for the answers, care, and respect you deserve. The best thing I have done is learn all I can about HS. Fighting the misinformation and continuously educating myself is the best way I know to advocate for myself. I have even educated other doctors about HS.

Second, there is no such thing as being over-prepared. I print out any test results and share them with my team of doctors. Write down your list of symptoms for every appointment, reactions to medicines, and any other pertinent information. This saves time at appointments when you only have 15 minutes to communicate directly with your doctor.

Lastly, find people who can support you even if they can’t fully understand your experience. This makes all the difference in the world when you feel helpless and alone during a flare.

The mental toll of having HS

My mental health has been the most affected by my HS. I am a type-A person. I like to plan ahead, be as organized as possible, and can be described as “ambitious.” But HS does not allow me to be in control. How can I plan a future when I can’t even plan tomorrow?

HS is a great source of my anxiety, which then triggers my depression. I often worry about what this disease will look like when I am 30, 40, and then 50 years old. I stress about whether to have children, knowing I can pass this suffering on to them. I feel immense guilt about using my sick time at work, having to cancel plans with friends or family, and the overwhelm of having so many doctor’s appointments. The mental toll of having HS is too much at times. I have done therapy on and off for many years to cope with my HS diagnosis, and I believe it’s absolutely necessary for anyone with a chronic illness.

Share your HS story!