Boundary setting when you have a disability or chronic illness

I also quickly learned that many able-bodied folks in my life do not understand or fully respect my needs and these newfound boundaries. Then came infertility treatments. Turns out my husband and I are both infertile, and we went thru a lot of IVF treatments to try and overcome that. So not only were my skills at setting boundaries heavily tested, but I also realized some critical details that forever changed how I look at boundary setting:

• Boundaries are for me, not against the other person.
• No is a complete sentence.
• I am not responsible for their feelings about my boundary or for the potentially negative consequences they’ll face for breaking my boundaries.
• Boundaries can bring peace of mind.

Let’s break those down.

Too often, when I hear conversations about boundaries, it’s focused on the negative aspects, as if having limits is only about saying no and hurting other people or forcing them to change. But none of that is the root of good boundary setting.

Boundaries protect your mental and physical health.

First, let’s get a common definition of what I’m talking about. When I talk about boundaries, I’m simply talking about the type of behavior or conversation you will not accept in your life. That’s it. It’s not saying no, cutting people out, being mean, or expecting others to change. Boundaries get complicated when we interact with other humans who may not understand or respect that line. We’ll get to that later in this post, but let’s start at the beginning.

Where do you need boundaries in your life?

Ask yourself the following:

• When you think through the people in your life, who makes you anxious, annoyed, or frustrated? Like if this person called right now, you’d feel a wash of negative emotion.
• What topics drain your energy? I’m talking about repeat topics mostly. Whenever someone asks how you’re feeling? Or if you really need that mobility aid? Or why you’re so tired all the time.
• What physical activities leave you exhausted or in more pain? Does wandering the mall sound like torture? Does standing at a bar all evening leave you wracked in pain tomorrow?

The answers to these questions are the people, topics, and activities around which you should look at setting boundaries.

Now go one step deeper in those questions: what is it about that person? Their energy/attitude, prying questions, gaslighting or dismissing of your needs. When you go out, what will make it more pleasant or cause less consequences the next day? Carrying your own snacks, using mobility aids or braces, setting limits to how long you’ll be out or on your feet. These are just a few examples.

The goal of boundaries is to protect or improve your quality of life. It can be so hard to put these things in place, but if you remember why you’re doing it can help.

When we were going through IVF, there is tons of testing and minor procedures. My mom wanted to be updated every step of the way and would get upset if I didn’t call the minute I was done with an appointment. I realized this was causing a massive amount of anxiety for me. I had to set a boundary that she wasn’t allowed to ask for details. That I would update her when I felt ready and had processed the information myself. I also stopped giving her the exact dates for anything.

At first, she was frustrated not being in the loop. But, as I said early, her feelings are not my responsibility. I was the one struggling, and I needed space to protect my quality of life. I periodically had to remind her when she started asking too many questions that I’d update her later.

Boundaries aren’t easy.

But so many things we do for our health aren’t easy. For example, constantly educating ourselves and others, advocating for ourselves with doctors, public access, and our autonomy. 

The hardest part of boundaries is standing up for yourself when others don’t respect the boundary. Once you know where you need a boundary, you need to clearly express that to the people it impacts, tell them what you’ll do if they don’t respect it, and follow through. Yes, all easier said than done.

“Mom, if you continue to gaslight me and the seriousness of my health, I’m leaving,” Mom says something crappy. You get up and walk out of the room, or leave the house, or hang up.

Drive yourself or have alternative means for travel so that if your friend changes her mind and won’t take you home at 7:30 like y’all pre-planned, you can still leave.

You’ll notice, there’s no convincing mom to stop saying those things or making your friend leave. The boundary isn’t about them. It’s about you. You aren’t forcing them to change. You are protecting your health and wellbeing.

Some people will understand and start to shift their behavior and language. Like my mom during my IVF treatments, she needed the occasional reminder but eventually stopped bugging me. Sometimes it takes baby steps to build up to the boundary you really want or need. Other times they won’t understand, and you may need to make the difficult choice to go low or no contact with those people. But that’s a whole other blog post.