Finding Your Match

What’s your number? No, actually, I don’t mean your phone number. Have you stopped to think about the number of doctors you’ve seen in your lifetime? If you are fairly young and healthy, maybe your number is small. Not me, not even close.

So how in the world are you supposed to figure out who is a good fit to treat your hidradenitis suppurativa? In all of those doctors you’ve seen, you would think that one of them (or a good number of them) would be well-versed in HS. That’s just not the case - HS is complicated! But here’s what I do to set myself up for better chances.

Joining online HS groups

First, I join patient chat groups online, especially if I can find them for my state and/or city. That isn’t always possible for everyone looking for care, but you will at least usually be able to find other patients who live in the same area and start with asking for names from them. Then you have to figure out how far you are willing to travel. Some simply can’t go far because of lack of transportation, or because of work or family obligations. These chat groups can be found on Facebook, Instagram, and Twitter. Sometimes groups will organize live chats on Twitter and provide hashtags using the pound sign (#) and a keyword or cluster of keywords so that everyone can participate at a designated time and connect. These types of chats are invaluable for connecting people around the world.

If I am in a group online but not chatting with anyone, but I think maybe the group might have info that would be useful, I search keywords. There are different types of doctors that treat HS. I’ll search for primary care doctors or PCPs, but also surgeons, and dermatologists. I was diagnosed by a gynecologist, so I will also search that term or OB/GYN.

What do other HS patients say?

If you live in the U.S., another way to get names is to go through some searches via your insurance company’s website. I almost never call because the representative nearly always goes by radius and specialty, and you still have to do a lot of work to eliminate options. I personally like to read and research anyway.

Of course, besides location, I pay attention to what others say about the names that come up. What is it they say about these doctors that they like or dislike? Is it really important to me? For instance, what if the doctor always runs late but the patient feels the best they ever have with the treatment they are receiving for HS? If so, I might mark that doctor as a maybe. But on the other hand, does that doctor not seem to know female anatomy, and does the area that they will be working on right in and around my female bits? That would be a big no, thank you. Does the doctor cancel and reschedule a lot? I probably will skip that one. Do they have a small parking lot? That one doesn’t affect me as much because I don’t drive, so I’m okay with that.

Are these doctors up to date on current treatments?

After more elimination, then I start looking up doctors on their own websites (and hopefully at this point in time, they have one; I’m always surprised when I come across an office that has no internet presence). What I’m looking for is any mention at all of hidradenitis suppurativa. If they don’t specifically talk about it, I don’t have faith that they will be up to date on current treatments.

I know what I want in my treatments. I want them to talk about what I want on their page. For example if I am looking to see if they are familiar with a specific biologic, or if they use biologics at all, I want them to talk about it.

Deciding on the right doctor

Lastly, during our first appointment, I have to decide if I want to take them on as my doctor. Do they talk to me and make eye contact? Do they tell me that HS lesions ONLY happen in certain areas of the body (which isn’t correct – they can occur wherever we have skin)? Do they tell me they only use one treatment for HS? If I run into a crisis with a lesion, how quickly can I get in for an appointment?

After going through all that, I’m also spreading the word and making sure my voice is added to the feedback. I try to stay clear, concise and fair. Other patients need to make decisions based on what I have written, just as I did with what was written before my visits. Healthcare is no casual affair.