Tips to Navigating Boundaries with Chronic Illness
Life, for me, has been this strange game of chess with extra pieces on the board. Just when I learn how to do the basics, life expects me to move on expert level. Mastering the expert level isn’t enough because the game wasn’t constructed with people like me in mind. My extra pieces look like stage four rectovaginal endometriosis, fibromyalgia, sciatica, polycystic ovarian syndrome (PCOS), fibroids, complex post-traumatic stress disorder (c-PTSD), severe depression and anxiety, gastrointestinal illness and occasional people who might chafe me like wet cotton touching my thighs on a humid summer morning run in Central Park. If you felt overwhelmed by that long list of ailments, this is oftentimes my daily life. People will say cliché things like, “It’s easier to throw in the towel,” while I’d heavily disagree with this thought process. Mental and physical chronic illness is much more nuanced than that. Finding ways to set boundaries to protect my sanity and well-being can vary depending on the circumstances and the day but let’s try to navigate through them together.
Evaluate the Reality versus Perception
I cannot tell you how many times someone positions themselves as my unofficial life coach to pushing through a rough patch. Depending on the atmosphere, I may encounter this type of rhetoric from fellow chronically ill people. How many times have we heard, “If I can do this, so can you!” Let’s not do that. Whilst people can be familiar with someone’s situation, nobody is wearing your physical body or emotions like an influencer’s 60 second reel telling you what they are feeling for the day. This sizzle reel requires you to acknowledge your own reality versus everyone else’s perception of how you’re “supposed” to be feeling. When others refuse to validate your feelings, always validate yourself. It’s not your imagination; trust yourself the first time.
Setting Boundaries with Confidence
I get it: The internet makes you feel guilty about setting boundaries because everyone’s vilified it as selfishness – maybe it is. Is that necessarily a bad thing? A lack of boundaries results in a lifetime of aggravation, bitterness, and uncertainty. Why do we need to make others feel comfortable at the expense of our mental and physical health?
Setting boundaries may take a bit of practice and willingness to experiment with what sounds natural to you. I do not suggest you to lie to others in efforts of establishing boundaries. Instead, evaluate every situation and inventory your thoughts:
1. Overall, how do I feel about this situation? Write down the first set of words that immediately come to mind.
2. Has this thing occurred before and you had a negative experience?
a. Did a person, place, thing, or scenario end in a positive experience and do I want to revisit it?
3. Have you expressed your disinterest in a situation and the person doesn’t respect your no the first time?
a. What techniques worked, didn’t work and/or did you submit to avoid conflict?
4. What are your non-negotiables in these situations?
5. Is it them or is it you?
a. Evaluate if you’re having a problem with a situation because of fear of failing but you’re interested in it or if there’s no interest at all.
b. Will this situation place me in danger? If so, evacuate and abandon ship. This may be one of the exceptions to the rule where a little lie might be necessary.
6. Does this scenario, person, place, or thing make you feel drained? If so, let it go or explore options to firmly shut it down.
This is a loose checklist of things to ask yourself and explore but here’s the thing: These questions don’t work unless you do. Be kind to yourself when trying to establish boundaries. Some people are boundaries royalty while others are awkwardly dancing in the corner. Always acknowledge every situation is different and factor in your medical condition with grace. As always, if they cannot respect your wishes, they probably didn’t deserve your company in the first place.
Steps to Advocacy and Self-Empowerment
Chronic illness, depression and anxiety are basically a fucked up peanut butter and jelly sandwich with no nutritional benefits or fulfillment. It can leave us burned out like your blow dryer going on strike before a job interview and no backup in sight. Let’s try this:
- Acknowledge your physical and mental day to day: We don’t have to practice toxic positivity mantras asking us to gaslight our experiences. Process your emotions in real time and give them a home
- Seek Professional Resources: You know your body better than everyone else but sometimes we need helpers. Try to find a supportive network of professionals who specialize in your medical needs. In my case, I normalized having weekly therapy sessions, especially on good weeks. Establishing this routine helps me understand my triggers and I feel better prepared for depressive episodes. Additionally, I keep up with my medical appointments as much as possible and try to stagger them in ways that I’m not filling my calendar with doctor after doctor. Sometimes I love seeing multiple specialists in a day to avoid frequent doctor trips and then immediately blocking off the next day or two on my schedule to destress. Other times I know that I don’t have enough ‘spoons’ – or energy resources required to complete tasks – in a day to interact with people. In turn, I’ll ask myself if I need to spread this out.
- While we’re talking about professionals, don’t be afraid to fire a professional. This is a heavy part of boundary setting. Granted, medical professionals receive a lot of training, but I urge you to find someone who will respect your humanity and your health
- Be selective with the outside helpers: I don’t care how people may view this, but I have certain people who can help me with certain things. I have family members who are great at listening to me without judgement and others who are best for mindfulness and accountability. I have friends who are super intuitive to helping me on days where I need help but have a hard time asking for it and those who know how to back off when I say it the first time. All helpers aren’t equal. Work with someone’s respective genius while acknowledging your helpers’ boundaries too. Some people tend to hover over us chronic illness baddies and are scared to offend.
- Remember to loosen up your schedule a bit and give yourself grace to not do all of the things. I know this is easier said than done but it’s truly necessary – for everyone. Sometimes, we are doing too much too soon and all of the damn time.
- Marginalization can amplify our experiences and feelings. Having multiple chronic illnesses makes me feel exposed and raw. Being Black, fat and queer makes me feel super invisible and hyper visible at the same time. It is not your imagination nor are you alone in your otherness. There’s a possibility that the things you’re feeling are occurring unfortunately because of the lack of people who look, move or sound like you. It’s okay to acknowledge that. When seeking professionals or friends, factor in this nuance if you feel safer opening up to treatment when you’re in the presence of another person with shared experiences. And yes, sometimes, we don’t get it right either. If this is the case, keep searching.
- Explore ways to feel comfortable with the word no. No is a whole sentence and if you smile while saying the word no to things you don’t want to be part of or associated with, an angel sings your favorite song while wearing booty shorts. I’m not sure about the last part but opting out to people, places, things, or commitments that don’t serve you will help you out in the long run. And may I add: Don’t wait until you’re infuriated to use the word no. Making yourself uncomfortable for the comfort of others will leave you bitter, exhausted and affords people around you to feel comfortable testing your boundaries. You can say no to people when there’s no problem and you don’t owe them an explanation.
I’ll never promise you full clarity. Instead, I hope that you read this and an aha moment happened or at the very least, know that others are going through similar hiccups as you. While this information may be helpful to able bodied people, this one is for us and those who want to be better advocates to chronically ill people.
As you go about your day, remember this: You’re worthy, validated, capable and deserving enough to set boundaries that honor your humanity and well-being. Take a moment to reflect on the boundaries you’ve set – or the ones that you desire to create. While your journey is unique, you’re not alone. Keep pressing forward and let me know your boundaries goals or practices below.
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