Hidradenitis Suppurativa – You Are Your Best Advocate (Part 1)
Last updated: January 2023
Why don’t you tell me a little bit about yourself? I know, everyone hates this question. Nearly everyone, that is. Let’s be a little more specific. Are you a lover or a fighter? Are you passive or aggressive? Are you a listener or a fixer? How you answer these are important when it comes to healthcare – actually, how YOU handle your healthcare. You are in charge. No one else has been through every episode of pain, infection, sickness to wellness and back to sickness, and sensation in your body except you.
Therefore, you are the best advocate for yourself, and no one else. We need to talk about how to function as your own best advocate.
Become familiar with hidradenitis suppurativa symptoms
First, acquaint yourself with all the symptoms of HS. Become very, very familiar with it, not only as it’s happening to you, but the whole spectrum of the symptoms, because at some point, your symptoms can change, and who likes surprises at any point in time when it comes to diseases? But I also have a very specific reason for saying this, and it is that hidradenitis suppurativa doesn’t usually live in someone’s body alone. There is usually at least one other medical condition. I will see fellow patients get in a discussion group and post a question and say, “I’m feeling ____, does anyone else feel that too?” and a bunch of other people will agree. The problem with that is that it actually has nothing to do with HS. What they are describing has to do with another disease entirely. They might be describing a common co-morbidity, and that’s why 10 or 15 other people immediately raised their hands. This confuses everyone - the person who posted, the people who responded, and anyone who happens to read it.
What’s the harm in this? If they never get diagnosed or treated for this other possible disease, it goes untreated. They continue to try to keep HS under control, but they aren’t taking care of this other one that is lurking. What do our bodies do when something else goes wacko? It makes our HS flare, maybe from stress or hormones, and then suddenly we've got a minefield of HS lesions to deal with on top of everything else.
Make a list!
I sure do hope you like lists, because now in your new role as an advocate, you need to sit down and make a list of all of your HS symptoms. Then you need to make a list of all of your other disease symptoms. And then you need to make an appointment with your doctor, possibly beginning with your primary care doctor, to try to sort out what else is going on.
Find a good hidradenitis suppurativa doctor!
You now know which specialty you need to go to because you have worked on the issue at hand. Fantastic! I actually think this is the most fun. This is a little bit like internet dating for me. Instead of shopping for men, I’m measuring up doctors. I mean, I even love it when I get to read about how they enjoy camping with their family and unruly dogs in their spare time. But silly stuff aside, research is serious. Of course, I read reviews! But I would like to emphasize that I never go by insurance "stars," because those are pretty meaningless – they just want to know if the doctors charge the lowest amount possible in their billing. Cheapest doesn’t always mean best.
When I look at what people say about doctors, I weigh what is most important to me. I don’t think all questions and all patients are equal. Sometimes fellow patients will complain about the layout of an office, or they think a staff member didn’t move fast enough. Those things don’t set me on edge. When you are reading reviews, decide what truly concerns you. What you think impacts you will determine how many doctors you eliminate as possibilities – because just like internet dating, your pool can shrink pretty quickly.
What I look for in a good doctor
What I look for is, did the majority of people say a doctor had a great bedside manner and was knowledgeable, or did the majority of people say a doctor was huffing and puffing and could not get away fast enough? Were there cautions about the staff messing up prescriptions, double booking appointments, or about the doctor consistently running two hours late?
Believe it or not, I also look at the age of the doctor. If the doctor has the possibility of being kept in regular rotation with all of my other doctors, I have decided that that person needs to be in my age range or younger. This also serves two purposes: The doctor is less likely to retire soon, and they aren’t so removed from medical school that they have decided they don’t want to learn anything new, so they should still be getting updated info about HS.
When you need to vent about HS, who do you turn to first?