5 Ways to Advocate for Yourself If You Think You Have Hidradenitis Suppurativa

5 Ways to Advocate for Yourself If You Think You Have Hidradenitis Suppurativa

by Sue Jones
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Anyone can have hidradenitis suppurativa, but it most commonly affects people assigned female at birth, individuals who are between 30 and 39 years old, and Black or biracial people, according to a 2017 study of 47,690 people with hidradenitis suppurativa published in JAMA Dermatology2. Although this isn’t always the case, people with hidradenitis suppurativa commonly have other health conditions as well, such as polycystic ovarian syndrome (PCOS), acne, type 2 diabetes, inflammatory bowel disease, or metabolic syndrome, according to the Cleveland Clinic.

To dig into more helpful resources on specific aspects of the condition, check out the AAD, Cleveland Clinic, and SELF’s hidradenitis suppurativa condition page.

2. Start keeping track of your symptoms.

Once you have a better idea of what hidradenitis suppurativa is, it may be helpful to keep track of your symptoms in a journal, where you can note the date your symptoms appeared, where your lumps are located, how big they were, how many times they’ve appeared in that location, what they feel like, and if they happened around your period. This can help you better compare your experience to specific hidradenitis suppurativa symptoms.

If you’ve seen your doctor frequently or been to the ER or urgent care several times due to these symptoms, you may want to request copies of your medical records to have on hand. Then, when you’re ready to make an appointment with a doctor, you’ll have tons of helpful information to provide about your medical history.

3. Search for a doctor you can trust.

If you’re concerned that your symptoms might be pointing to hidradenitis suppurativa, then seeing a dermatologist will be your best bet in getting an accurate diagnosis. Of course, not everyone has access to a dermatologist—for reasons like cost, local availability, and lack of insurance—so you may need to start with a primary care doctor. This can sometimes make things a bit tricky, as many family doctors may not be as familiar with HS “or might not have gone through a lot of dermatology training during medical school,” Dr. Martin explains.

You might also feel really anxious talking about your symptoms, which is completely understandable given that they can appear in some really personal areas. That’s why it’s important to seek out an expert who is empathetic and takes your concerns seriously.

If you have a doctor who you feel comfortable talking to but they’re not an obvious hidradenitis suppurativa expert, like an ob-gyn, then you may want to make an appointment with them anyway, says Dr. Martin. You can ask about their familiarity with the condition and request a referral to a dermatologist if necessary. Then, it’s worth taking some time to make an appointment with a hidradenitis suppurativa expert. Here are some things to consider during your search:

  • Check a physician’s website to see if they list skin conditions they commonly treat. If this information isn’t available, you can call and ask the office staff about the doctor’s specialties.
  • Ask for local recommendations if you don’t know where to start. “There are several support groups for hidradenitis suppurativa on social media platforms, and it may be helpful to post seeking recommendations for providers in your area, to see if others have had success with a particular physician,” Dr. Martin says. A few popular Facebook groups include Hidradenitis Suppurativa Support Group and Hidradenitis Suppurativa Warriors.
  • Create a list of initial questions. At your initial appointment with a new doctor, asking things like, “How commonly do you see patients with hidradenitis suppurativa?” and “What types of treatments do you provide for this condition?” can give you an idea about how familiar they are with the condition. Dr. Martin says some doctors see patients with hidradenitis suppurativa several times per week or even per day, and these experts may be more knowledgeable about how it affects your livelihood, possible complications to be mindful of, as well as skin-care tips to help manage the condition.

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