Journaling As a Daily Tool for Rare Disease

When I was first diagnosed with narcolepsy, I felt like I was drowning. I floundered in confusion. All of these new symptoms were thrust upon me. I didn't know where to start when it came to explaining them! I could hardly understand them myself. I just knew they were happening. But I didn't know why. And I didn't know what to do about it.

Once I saw my first sleep doctor and got my diagnosis, I was able to understand my new condition better. We put a name to it: narcolepsy. "But what does that mean?" I asked myself.

I knew what it meant in terms of my body - that I was chronically exhausted, experiencing sleep hallucinations (even while awake during the day), unable to stay asleep at night, and much, much, so very much more.

Journaling to understand my new diagnosis

So, I started journaling. I had a page for every day. I listed the times I took my medication. I listed the symptoms I had and the times of day I had sleep attacks. I listed when I had cataplexy attacks, as well as what triggered them.

As time went on, I began to use journaling as more than just a way to record my symptoms. I started to discuss my feelings and to set goals. I began utilizing positive affirmations to subtly change my paradigm from victimhood to victory.

Benefits of journaling with rare disease

Journaling can be a powerful tool for coping with rare chronic diseases in several ways.

1. Emotional expression

Writing about feelings can help individuals process emotions related to their illness, reducing feelings of isolation or frustration. And oh, boy, does a rare disease get frustrating.

2. Tracking symptoms

Keeping a detailed record of symptoms, triggers, and treatments can help identify patterns, making it easier to discuss with healthcare providers. I used my notes during doctors' appointments to keep my experience of symptoms at the forefront of each appointment.

It's so easy to wait months for an appointment, only to forget everything you wanted to say when you walk in. In these cases, journaling is a solution that works for me.

3. Stress relief

Journaling can serve as a form of stress relief, allowing us to unload our thoughts and worries. This is a great way to alleviate anxiety and stress.

4. Goal setting

Writing can help in setting personal health goals and reflecting on progress. This helps create a sense of accomplishment.

For example, as I started new treatment options for my rare disease, I was able to look back on symptom notes and compare any progress made.

5. Creating a supportive narrative

Journaling allows us to frame our experiences positively. I use positive affirmations to help create a more optimistic outlook on life. This helps to build resilience and a more hopeful perspective.

6. Mindfulness and reflection

Regularly writing thoughts and feelings can promote mindfulness, encouraging individuals to focus on the present and reflect on their journey.

7. Problem-solving

Journaling provides a space to brainstorm solutions to challenges faced due to our rare disease. This can empower individuals to take proactive steps.

Overall, journaling can be a therapeutic practice that supports emotional and mental well-being for those managing life with a rare disease.