Coming Out As Chronically Ill: How To Talk To Friends And Loved Ones About Your New Diagnosis

Getting a diagnosis of HS comes with a whole host of emotions - a relief to finally have an answer, fear of what is to come, uncertainty, anger, sadness… the list goes on! With all the things you now must get done, one of them can seem the most intimidating; How do I tell people about my new diagnosis? Will they judge me? What will change?

Talking to loved ones about hidradenitis suppurativa

Be prepared for their reactions

Just as this is new and scary for you, this is new and scary for them too! They care about you and whether or not you’ve been upfront about your condition and symptoms before your official diagnosis, finding out a loved one has a painful incurable disease is quite a large piece of information to wrap your head around. Let them know you share these feelings and that you really need their support right now. Explain to them that while you appreciate their feelings, YOU are the one who has gotten the diagnosis and you might not have the capacity to hold space for their emotions while still trying to manage your own. Don’t be afraid to set that boundary as you’ve got a lot on your plate at the moment and you need to take care of your mental health too!

Don’t feel like you have to have all the answers

This is a brand new diagnosis, you don’t have to be an expert! HS is a multifaceted and ever-changing illness, and it is OKAY that you won’t know the answer to some of their questions. Heck, you might not have even gotten the answers to your own questions just yet! Explain to them that this is new for you too and that you’ll share the information *you feel comfortable sharing* once you have it.

Remember, this is YOUR journey. Again, don’t be scared to set a boundary about how much you’re willing to share! You need to prioritize your health both mental and physical and you do not have to feel pressured to share more than you’re ready to.

Put together a list of questions for your next appointment

There is no such thing as a stupid question, especially when it comes to a new diagnosis. When I was first diagnosed, questions would pop up all the time. Do I need to be bathing differently? Do certain fabrics make it worse? Won’t taking long-term antibiotics reduce their efficacy if I get an infection unrelated to HS? When I went into my first dermatology appointment after my diagnosis, I had a list of 27 questions I had come up with in the SEVEN DAYS between my GP appointment and that one! Use a note-taking app on your phone (or carry around a little notepad if you enjoy putting pen to paper the old school way like me) so that you can write down all of your questions and take note of all the answers when you get them. This will also give you a chance to ask your loved ones if they have any questions and you can add them to the list.

Use the HS resources available online

There are some incredible websites (Like, uh, this one!!) and advocacy pages that have FAQs and infographics that debunk common myths about HS that can help you quell your own fears as well as your loved ones. You can look through them together, or if that puts too much labor on you, send them the links and ask them to do the research themselves and THEN come to you if they have questions.

It’s okay to be scared

This one isn’t so much of a tip as it is a reminder: it is completely okay and totally normal to be scared about having to tell your loved ones. I know I sure was, and I have a family history of HS so I already knew they would be supportive and understanding! The main thing to remember is that no matter what, the people that genuinely love you will be there for you no matter what you’re going through.

I want you to know that as much of an upheaval as this is for both you and your loved ones, you aren’t alone. You will always have this community to stand behind you, so don’t be scared to reach out and ask for help!