A Letter to the Person Diagnosed With Hidradenitis Suppurativa

Welcome to a club I wish you didn’t have to be a part of.

You’re probably both so relieved that you finally have a diagnosis, but also terrified as to what the future might hold. Your doctor might have just handed you a pamphlet about the disease with little to no additional information. I want you know that I understand. I know what you’re going through. I know what it feels like to both be hopeful and hopeless. To feel like you might be able to get some relief but are also terrified that treatment options might not work.

First off, you do not need to stay with the doctor or dermatologist who diagnosed you. Just because they’ve heard of hidradenitis suppurativa (HS) doesn’t mean they’re going to know the best options for you. I am still so grateful for the doctor who diagnosed me, but after he offered me a course of antibiotics and no other information, I knew I needed to start searching for a new doctor. It took me almost four years to find a dermatologist who not only heard of this disease, but also knew about so many different treatment options.

She’s the person who goes to conferences to find out about the latest treatments for this painful condition. She’s comforted me as I’ve cried in her office after finding out a treatment option wasn’t working. She’s taken my calls on the weekends when I’ve been in a fight with my insurance company over the cost of my medication. She’s a warrior and she’s helping me fight this disease. Keep searching for someone like her. There are wonderful doctors and dermatologists out there who are willing to fight for us and want to help.

Secondly, know that you are not alone. There are groups out there for those of us who are struggling.

There are people who know what you’re going through. We know what it’s like to wake up with a new abscess, to cry when it hurts so badly, to feel frustrated when you feel like you’ve run out of treatment options. Trust me, we’ve been there.

I know not everyone in your life is going to understand what you’re going through, but the best thing I did for myself was tell people about my disease and surround myself with those people who tried to understand what I was going through. Those people who might be struggling with a chronic illness themselves. Those people who ask me about my HS and educate themselves on the disease. Those people who will come over in sweatpants and just sit and watch TV with me. These people are invaluable.

Thirdly, please don’t give up hope but also don’t be too hard on yourself. Please keep fighting. I know it’s going to be so tough. There are going to be days when it’s going to be impossible to get out of bed. That’s OK. Take the day to recover. Take the week if you need to. There are going to be treatment options that work for some people but not for others. It’s OK.

There’s nothing wrong with you if a treatment option isn’t working. Keep searching for a new one. People will give you so many opinions on foods you should avoid, oils you should try, and lifestyle changes you should make. I encourage you to listen to these opinions but also listen to your body. You know what’s best for you. If you can’t make it to the gym because you’re in so much pain, that’s OK. You make the decisions.

The more people speak up about this disease, the more awareness we can raise. I always am so embarrassed to share details of my flare-ups with strangers, but if it means raising awareness for a cure, I’m willing to do it.

You’re amazing. You’re loved. Don’t give up. It’s going to be a really hard battle, but you’re so strong.

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Thinkstock Image By: Milenko Bokan