6 Reasons You Should Journal Through Chronic Illness
I've always been a writer. It comes naturally to me to create worlds, to express my feelings and ideas through words, and to use language to sort through and capture memories and experiences. And when I was diagnosed with ankylosing spondylitis, it felt write to keep a diary — not just for symptoms or notes about medications and exercises or diet, but for my thoughts and feelings. (I also write about chronic illness online — like on this website! — which helps the sense of isolation).
Pain weighs heavy on the soul
Honestly, when you are carrying the albatross of pain day in and out, it weighs heavy on the soul. Often, chronically ill people don't have very many people who truly "get" it. We may have our partners, friends, or even a community of people to who we turn to in order to talk, but we can't always vent or rant as we wish. The point is, sometimes people don't want to hear it. Sometimes they have had their stressful day and can't hold space for us. Sometimes people just don't have compassion, especially if they don't understand what daily chronic pain and fatigue is like. And sometimes the stress and trauma of our sickness affect our family in what is called relational trauma.
Sometimes the page holds everything for us. It is a place for truth and self-validation, and it is a receptacle for the shadow self — the parts of ourselves we keep hidden or quiet out of shame or grief or fear that our bodies are changing too much.
Here are six reasons I keep a chronic illness journal:
- Pain awareness. I feel like I can be brutally honest without annoying or worrying people. This helps me get a sense of my pain levels and any patterns in my pain; I also like to give language to my pain. Is it throbbing? Is it like I'm being sawed in half? Does it feel like my bones broken within me? Sometimes when I can describe it helps me process it (and talk about it to others).
- Face the truth instead of repressing it. When I write what I feel — dark existential thoughts, fears of death or a lower quality of life, all the sad stuff — I try to get it out so it doesn't fester, which causes more misery down the road. Writing the pain down also validates it and allows me to accept it.
- Gratitude. Making a gratitude list once a week (maybe also on hard days) helps me gain perspective and not get lost in a dark hole. I often find that I feel better after I make a list; it opens up my mind to my greater reality, outside of my internal feelings of pain.
- Symptom diaries are helpful for doc's visits (and to keep an eye on any patterns). Keeping a diary of symptoms, feelings, and the ebbs and flows of your experience can potentially help you see patterns in your behavior, needs, and strengths. It can tell you if there's a connection between what you eat and how you feel or your stressors and pain levels.
- Creativity. You never know if you'll end up creating insights, ideas, and words you want to share with others. You'd be surprised at the scribbles and poems and such that come to be.
- It helps with pain and anxiety reduction. Journaling has been proven effective in disease management by helping to reduce anxiety1 and even tentatively with pain management.2
Do you use the word disability to describe your AS?