blog round-up – Skillfully Well & Painfully Aware

Chronic Blog Round-up: 6 Insightful Blog Posts About Celebrating the Holidays With a Chronic Illness

Chronic illness complicates holiday celebrations. Trying to prioritize self-care while also participating in the holiday season is, at best, a tricky balancing act. Recently I wrote about how I use mindfulness meditation to get the most of this time of the year – to stay present, savour the good moments and manage stress. I often turn to the collective wisdom of the blogosphere to learn how others approach the challenges of life with a chronic illness. I wanted to share a few of the insightful posts that I’ve read written by chronic illness bloggers. Some of them share helpful strategies and important ways to manage expectations so you can enjoy this time of the year. Others provide valuable insights that validated my own thoughts and feelings about what the holiday season is really like for people with chronic health conditions. I hope you get as much out of reading them as I did!

Disabled Diva: Six Ways to Dominate Christmas With a Chronic Illness

More than just practical tips for getting through the holiday season, this post suggests great ideas for changing your expectations about how to celebrate. For example, it asks whether you’re wearing yourself out trying to re-create past Christmas memories. I definitely fall into this trap every year! The suggestion to create new traditions that fit that are workable for someone with a chronic illness is really great advice.

My Brain Lesion and Me: A Christmas Symbol of Life With Chronic Illness

This lovely little post describes how a snowflake is the perfect holiday symbol for life with chronic illness. The experience we each have with chronic illness is as unique and individual as a snowflake. There are several important lessons this symbol can teach us, including that comparing ourselves with other people is an unproductive exercise.

Chronic Mom: 5 Gifts People With Chronic Pain Really Want This Year

This post talks about the non-material gifts that people with chronic illness wish they could receive – like having their boundaries respected or not being criminalized for taking opioids to manage chronic pain. Raising awareness about the social changes that need to be made to really accommodate people with invisible illnesses is important because, really – that would be the best gift of all.

My Medical Musings: A Merry Little Chronic Christmas

I thought this post really captured the ambivalence that people with chronic illness may feel about the holidays – we hope we’ll be able to enjoy the plans that we’ve made, but we feel anxious that our symptoms will get in the way. Many people with chronic illness will be having a quiet Christmas or other holiday celebration. And while this can be truly enjoyable, we can miss the get-togethers and festive preparations going on around us.

ME/CFS Self-Help Guru: The Alternative Spoonie Gift Guide

If you care about someone with a chronic illness, this post describes the best way you can give your love and understanding to them this holiday season. For example, how to connect with them when a traditional holiday event just isn’t possible. This post really puts into words what I want to communicate to family members and friends this time of the year in a clear and thoughtful way.

Feasting on Joy: When Holidays with Chronic Illness are Hard: How to Find Rest and Survive Them

This post is a very thorough guide to getting the most out of your celebrations this holiday season. It shares a mix of practical tips and important realizations for balancing rest and purposeful activities. This post is written from a Christian perspective on celebrating Christmas, yet I think the realization that intentionally focusing the activities you do choose on what is most meaningful to you can be helpful to anyone with a chronic illness celebrating a holiday. Prioritizing self-care and rest can take several forms and this post describes several useful strategies.

May your days be merry and bright this holiday season and may you be surrounded by the people you care about most! xx

How reading chronic illness blogs helps me navigate life with chronic illness

Living with a chronic illness can feel isolating. How many people do you know who even have a chronic illness? Our daily challenges are unique, and it can be difficult to find someone who really understands.. Even when it comes to positive changes, I find that friends and family can have a difficult time relating to the treatments or lifestyle changes that I’ve made in order to improve my health and well-being. For example, starting a meditation practice or taking supplements was considered equivalent to fraudulent ‘snake-oil treatments’ by some of my more skeptical relatives. Even more broadly, living with chronic illness changes your perspective on life and your priorities. While you might see working towards acceptance as part of healing, other people around you might see it as ‘giving up’ on getting better. For all of these reasons, it can be difficult to find your way through the realities of life with a chronic illness

This is where the community of chronic illness bloggers comes in. Reading about shared experiences can help reduce that sense of isolation –– knowing other people out there can relate to what you are going through. Chronic illness blogs can help to suggest treatments or self-care strategies, which is important given the lack of research, medical treatments or adequate pain management supports out there. Most importantly, chronic illness blogs can inspire their readers with the wisdom of experience and the power of insight.

Here, I wanted to share a few of the inspiring posts I read this spring about navigating real life with chronic illness:

Inspiring blog posts from Spring, 2017

What does healing mean when you have a chronic condition? Sarah from the Pain Companion shares an insightful, inspiring post on understanding healing as a holistic, lifelong journey. In her post “Will I Ever Heal from Chronic Pain?” she writes that healing “is the process by which we create a new relationship with our bodies, our emotions, our minds, and our spirits as demanded by some crisis in life.”

A beautiful, uplifting poem called “You Are Miracle” by Thuli Zuma shared by Sheryl over at Chronic Voice. A snippet of my favourite verse:

You are miracle.
You are harmony.
You are 90 trillion cells weaving new tapestry.
Each one testifies to the mystery
That even on the worst day
Even at your worst
You are still your best
You are miracle

The Beauty of the Story Your Life Is Telling by Stacey from Chronically Whole An inspiring take on the narrative of being a person living with chronic illness. My favourite lines: “Some may say it’s telling a story of failing by not getting better faster [but]… Let your life keep telling the story of adapting, overcoming, loving in spite of loss, being unafraid to face the uncertain future head on…”

What can fairy tales teach us about living with chronic illness? That we have to be our own heroes, for one. Rhiann, from My Brain Lesion and Me, writes: “My experience of living with a permanent neurological condition has also taught me that we all have the power to rescue ourselves from our own battles in whatever form that they take.” Read more at Life is Anything But a Fairy Tale.

Identity and chronic illness is such a complicated topic. Many of us lost core aspects of how we identifed ourselves after developing a chronic illness. Career is often one of those casualties. So how do you construct a new identity for yourself beyond being someone living with a chronic illness? Jenny from Tips for M.E. shares her thoughts on important issue in her post Ascribed and Chosen Identities in Chronic Illness.