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Build It And They Will Come

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 every day plans. Where I didn't have to drive myself bananas, thinking about what might or might not happen every minute of every day.

One of the things I've found the hardest to adapt to in being chronically ill is in allowing people around me to lighten my sickly load, and in 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 in it. 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 we are at our worst. The friend, partner or family member of said ‘sick person’ 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 is a perma-patient is difficult but requires a little work on both sides to maintain an equilibrium. Expectations on both sides need to be actively managed.

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. 

For someone chronically ill some of the ways in which we 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 ostracised.

We feel the more we say ‘No’ to, 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 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 instil 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 this and reminding those you love how important they are to you goes a long way to softening the blow to a ‘no’. This all works both ways and learning to find a balance of workable boundaries is something that can be established between friends/partners/family over time.

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