There is an old saying: “Good fences make good neighbors.” Having healthy boundaries in relationships is important for everyone, especially for people with a chronic condition like hidradenitis suppurativa (HS). Setting and defending boundaries allows you to protect your physical and mental health and focus on feeling your best while living with HS.

Setting boundaries can be hard. Your friends and family may not be used to you saying no or establishing limits for when and how you are available to them. They may expect you to have the same energy you had before you developed HS and symptoms like recurring boils. No matter what, you are entitled to establish the boundaries you need to maintain your emotional and physical wellbeing. Setting boundaries to take care of yourself does not make you mean or selfish – it helps you focus on what you need to do to care for your HS.

Here are a few tips for setting boundaries clearly and compassionately:

1. Use clear, direct language. For example, “I cannot attend the birthday party” is clearer and more direct than “I’m not sure I’ll be able to attend the birthday party.”
2. Use “I” language and avoid accusations. For example, “I go to sleep early. I am not able to take calls after 9 p.m.” is less accusing than “You always call late and wake me up!”
3. Don’t try to justify or over-explain your boundary. “No” is a complete sentence. For example, “I’m not able to take on new obligations right now,” is better than “I can’t drive carpool because having so many kids in the car stresses me out, and stress can cause my HS symptoms to flare.”

After setting boundaries, do not be surprised if you need to defend them. Some people will likely test your boundaries, especially when they are new. Expect some pushback and consider what a good response might be.

Here are some examples of boundary testing and possible responses:

1. After saying you cannot attend a party, someone attempts to use guilt to pressure you to go. You could explain that HS isn’t taking that day off, so you will still be unavailable. You could point out that HS feels bad enough without adding guilt, so you don’t feel guilty about saying no to things that will be bad for you.
2. After setting a boundary of no phone calls after 9 p.m., someone calls at 9:15. You could choose to let the call go to voicemail. You could answer and ask whether the call is about an emergency. If it’s not an emergency, ask them to call back in the morning, wish them a good night, and hang up.
3. After saying no to one new obligation, you are asked to take on another. You can point out that HS is a chronic condition, meaning that it isn’t going away any time soon. Therefore your avoidance of new obligations applies to any new obligations, and if they ask again, the answer will be the same.

After testing your boundaries a few times, most people will understand that they are well-defended and learn to respect them. If you have allies who understand the challenges of hidradenitis suppurativa, ask them to help you defend your limits with others. Remember, you don’t need to apologize for setting good boundaries that help you stay healthy, manage your HS symptoms, and feel your best while living with HS.

Here are some conversations from myHSteam about setting and defending boundaries:

"I am hurting pretty bad today, but I still got up to take my daughter to school and go to work. HS makes it even more difficult as a single mom. I don't have anyone to rely on, so I have to just push through."

"It warms my heart to know that I am not alone in this skin war! For years I felt dirty, but I know I'm not dirty. I know that I can control this. it won't control me anymore! I'm considering going to a psychiatrist to talk out my anger and frustrations."

"Wife here: I take care of him 24/7. I feel that he chooses to sit and not help with anything around the house. I just need ideas to get him motivated. Because eventually, I'm going to be burnt out from doing everything."

Have you successfully set boundaries that help you manage hidradenitis suppurativa?
What tips would you recommend to help set healthy limits with others?
Share in the comments below or directly on myHSteam.