Setting boundaries can be extremely difficult, especially when suffering with chronic illness. Having a chronic illness doesn't mean we don't want to be included in plans with our family and friends. It means that when asked to do something, we may have to turn it down because we're in so much pain or experiencing other symptoms related to our illness.
With chronic illness, you never know when symptoms are going to pop up or worsen, which isn't our fault. But, we still feel guilty if we have to cancel plans or unable to do something. It's OKAY to say NO. If you say yes to something and then feel miserable later wishing you hadn't said yes, you are hurting yourself. Nobody knows how you feel so it's important to speak up for yourself. Boundaries ARE healthy and necessary. Physically, mentally, and emotionally one person can't say yes to everything in life. We have to decide for ourselves no I don't want this in my life. An example: you get asked to go hiking, but don't feel up to it or like the idea of hiking. This is a boundary, you're not going hiking. So you say something like "no I don't want to go hiking or feel up to it, but thank you so much for asking".
Some things we have to do no matter what like eat, sleep, etc. We don't have a choice in that, but we do have a choice with how we spend our time and with who. It's okay to help your friends and family. It's not okay to let them walk all over you.
One boundary that I've set is scheduling time for myself, usually watching Netflix. I usually go to my room around 9pm and if I don't go to sleep then, I'm in my room watching Netflix or listening to music by myself. I do a lot during the day to help me and my family, so scheduling me time has helped me relax and decrease my stress, which is a boundary. Another boundary I've set for myself (probably because of my health) is not agreeing to plans until the day before to see how I feel. If it's something I want to do, I say something like "I would love to do that! Is it okay if I let you know the day before if I feel up to it?". That way I'm not committing to something and don't have to back out of plans if I don't feel up to it. I can talk with the person the day before or the day of if there's enough time and say something like "I'm so sorry I don't feel up to it. Can we try another day?". It's also important to set boundaries for you and people who may be stressful, toxic, or draining. You only get one life and have to make yourself a priority.
Once you've set a boundary, you have to enforce it. So for my example with going to my room at 9pm, if I don't do that, I might not get time to myself that day and may suffer physically, mentally, or emotionally because of it. That only hurts me. If you say you don't want to go hiking and someone tries talking you into it, you have the choice to either stand by your boundary or cave and go hiking. If you cave even though you don't really want to go, the person may realize this and think they can get you to cave in the future if they want you to do something. Also, it's important that you don't feel guilty when you set boundaries. At the beginning you may feel guilty, but it's important to stick with setting boundaries as it will get easier with time.
Three books that I highly recommend anyone read that is struggling with boundaries are pictured below (from Amazon): Boundaries, Beyond Boundaries, and Safe People. I have struggled with boundaries my entire life so my counselor recommended that I read Boundaries when I first started seeing her in 2015. Since then, I have read Beyond Boundaries and Safe People. They have helped me tremendously with how to effectively set boundaries and I hope they help you, too. After writing this post, I think I'm going to go back and reread them!
I hope you find this information helpful.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.