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How to Create Boundaries When You're Chronically Ill

Kathleen Nicholls
two women talking to each other on a bench

I’ve been consistently (and “officially”) ill, for well over a decade now. It’s exhausting and frustrating. I’m regularly homesick for health. I miss the parts of my life where I didn’t have to factor my health woes into my everyday plans — where I didn’t have to drive myself bananas, thinking about what might or might not happen every minute of every day.

Since living with chronic illness, two of the things I’ve found hardest to adapt to is allowing people around me to lighten my load, and establishing new boundaries around what I should and shouldn’t expect from my relationships.

Expectations around what I want, and don’t want people to do for me can be tricky to overcome and even trickier to express out loud.

Boundaries are important to establish for those on both sides of a relationship with chronic illness. The “sick” person needs to learn how to let people in, open up parts of their life they may not necessarily have been comfortable sharing otherwise, and allowing others to take some of the burden when they are at their worst. The friend, partner or family member, in turn, needs to learn when to intervene and when to allow us the space to adapt to our changing circumstances ourselves. Finding a balance on how a relationship changes when one party has chronic health issues is difficult, but requires a little work on both sides to maintain an equilibrium. Expectations on both sides need to be actively managed.

Related:Why 'Give Up' Is the Best Advice Any Doctor Has Given Me

Learning boundaries is important for everyone, not just those adapting and living with chronic illness. Many of the reasons why we don’t have them are instilled from an early age, some even deep-rooted childhood fears that we need to learn to work through. Not having boundaries permits people around us to do us harm, simply because we have become conditioned to fear conflict or the loss of a long-standing connection.

As someone who is chronically ill, some of the ways I’ve realized we might violate our own boundaries might include:

  • Spending time with others to the point of physical/emotional exhaustion
  • Not letting others know our physical/emotional limits
  • Giving too much of ourselves without having our own needs reciprocated
  • Not making our own emotions/opinions a priority

Oftentimes when we are unwell, even having others simply visit us is exhausting. Feeling a pressure to “perform” or be buoyant and cheerful when we feel at our worst can be overwhelming, and generally unapparent to those on the receiving end of our super-imposed sparkling wit. Agreeing to social events or following though on pre-arranged plans when ideally we should be lying horizontally under 15 blankets, is another way in which we dismiss boundaries for fear of upsetting others, or being socially ostracized.

Related:The 5 Stages of 'Doctor Disenchantment' When You're Chronically Ill

We feel the more we say “no” to events, the less we’ll be asked.

We will exert ourselves too much to appease others.

We’ll eat things we shouldn’t, so as not to cause a fuss.

We’ll drink that extra drink that we know we will “pay” for later, just because someone bought it for us.

We will negate our own needs and bulldoze through the boundaries we took so long to build up.

Learning to maintain boundaries and set them (with love) is a work in progress.

The main thing to remember is to start with appreciation and work from there. Be mindful of others’ reactions and continue to instill the idea that although you can’t/aren’t able/don’t want to do that thing, whatever it may be, that you are grateful to be considered regardless. Positive affirmation is central to setting boundaries, and reminding those you love how important they are goes a long way to softening the blow of hearing “no.”

Related:Why My Chronic Illness Makes Me Scared to Go Home

This all happens both ways, and learning to find a balance of workable boundaries is something that can be established between friends, partners and family over time.

The key is to start from a place of love and respect, because I believe anything that comes from this place can only blossom into something even more beautiful.

Have you been able to create boundaries around your chronic illness? Has it been a challenge? Let us know in the comments below. 

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