Advice for the Newly Diagnosed
Last updated: April 2023
I was diagnosed with hidradenitis suppurativa 7 years after my first flare. I felt conflicting emotions after my diagnosis. It took me a long time to learn how to advocate for myself and understand what HS is. Here are some tips that I have learned along the way.
Find a good doctor
Unfortunately, some doctors still have not heard of hidradenitis suppurativa (HS) and the ones who have may not know a lot about it. Finding a good doctor can make a huge difference when treating HS.
I have seen doctors that I did not feel comfortable with. I have talked to doctors that did not listen to me. Over the past decade, I learned to trust my gut. If I feel uncomfortable with a doctor, I do not have to keep seeing them. When I changed doctors and found one that was attentive, empathetic, and listened to me, I felt empowered to take control of my health care. That was an impetus for me to learn more about HS and advocate for myself.
Do some research
I wish that patient education was a bigger part of diagnosis and treatment - and healthcare in general. Unfortunately, doctors do not always have the time and we do not always know what to ask!
Something that helped me cope with my HS diagnosis was (and is) researching and educating myself about this disease. Learning exactly what is happening to my body helped me understand this disease better. I felt empowered to handle this disease, ask for what I need, and open up to others.
Some sites that I like for HS is HSDisease.com, as well as the HS Foundation, the Mayo Clinic, No BS about HS, and the National Organization for Rare Disorders.
Open up to friends and family
This is one that I still struggle with. But every time I do, I feel better because of it.
HS can feel isolating. When I was diagnosed, I was excited to have a name for these symptoms that I could use when explaining to my friends what my experiences with HS are. Telling my friends about HS made me feel less alone. Opening up to my parents and friends has helped me manage my HS symptoms and emotions.
Remember, this is not your fault
After diagnosis, we may feel like we did something to cause HS. But that is not true. I know it is important to me that I regularly remind myself of this.
HS is caused by our immune system. It is not contagious. It is not caused by being overweight, shaving, wearing certain clothes, being dirty, or using certain products on our skin, like body wash or deodorant. These things may trigger or worsen our symptoms but they did not cause HS.
Having HS can affect our mental health. It can cause feelings of shame, embarrassment, and guilt. That is why it is important to remind ourselves that HS is not our fault.
Diagnosis can be a great relief and be used as a tool. When I was diagnosed, I used it to educate myself on this disease and find support. However, a diagnosis can also be difficult, especially as I learned what to expect from HS. These tips helped me feel like I could better handle this disease, but it is a process that I continue to work on.
When you need to vent about HS, who do you turn to first?
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