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Chronic Acts of Love

I’ve been suffering from a severe, chronic and incurable illness for (officially) almost a decade now. As this week, 1st to the 7th December, is Crohn’s and Colitis Awareness Week, I thought I’d take some time to reflect on what being ‘chronically ill’ has meant for my life.

Living with a misunderstood and debilitating condition like IBD (inflammatory bowel disease) is a continuous learning curve that just seems to get more and more curvaceous the longer you live with it. That said, being a ‘sick’ person has taught me more about myself than any libraries’ worth of books ever could.

I’ve learnt to value good health when I have it, trained myself to focus with sniper-like vision on what and who is important to me, learnt to value love, learnt to value life

There are some general similarities for most of us with a chronic condition. Pain and discomfort on a daily-basis are a challenge. Chronic fatigue is like wading through treacle from the minute we open our already stinging eyes. Constant trips to and from hospital become a depressing part of our routine. We learn to adapt our lives around our dysfunctional bodies. We undergo a metamorphosis of sorts. But as an ugly caterpillar transforms into a beautiful and vibrant butterfly, we often feel we’ve performed our transformation in reverse. As our appearance changes, our bodies fail us, and our confidence dwindles, we retreat into our cocoons. (I’m talking about our bed here in case you’re missing the massive neon-signed analogy I’m attempting…)

Many of us will suffer from extreme and often crippling anxiety. We may alienate ourselves from those we love through fear, shame and the dread of being misunderstood. We feel ‘changed’ almost overnight and those around us often find this hard to relate to. This is when many of us may turn to social media.

This can of course, be can be a wonderful tool to be used for making connections and learning about our conditions. But it can also be a quagmire of anxiety. You're reading this right now (THANKYOU) and no doubt found it via social media. Someone shared it on Facebook or Twitter, or you found it on another website, or via some other method I’m nowhere near cool enough to comprehend. That in itself is wonderful: the sheer instant connection.

But it's easy to get caught up in what we see on social media. This can be particularly true for those of us who struggle with chronic and/or mental illness. We spend a lot of time in our own heads and that can cause us to overthink and assume we are alone in our misery and fears. It can allow us to get emotionally lost in what we are ‘told’ our needs should be.

I’ve learnt (slowly) that love, and acceptance are all around me. I just have to work constantly on being open and willing to receive them. I have learnt that acts of love are found in listening to my fears and withholding immediate judgement. In being honest with me when I overreact or assume the worst. In using single cream instead of double because he knows he won’t be able to talk me out of eating mash potato and it’ll at least cause me a little less discomfort.

I am ‘sick’. ‘Unhealed’. And this often means I can find offence in places it doesn’t exist. Social media can exacerbate this so when I feel that anxiety rise I stay away from it. My ‘sick’ reality can be a terrifying place, so I have to remind myself that it’s only a part of me. The parts of myself I can work on ‘healing’ (without need for a medical degree) are what I put work into each day; my mind, my thought processes, ensuring my relationships are strong foundations to build on. When I work on these aspects of my life I can remind myself that often the actions of others have absolutely nothing to do with me. What I feel are my failings or faults are often entirely imagined. This makes any set-backs a little easier to bear.

Every day I get to wake up and ‘heal’ myself a little. So do you! If that isn’t an act of love I don’t know what is.

Kathleen NichollsComment