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Eureka! Triggers and Signals

By January 14, 2018November 25th, 2018Advocate, Caregiver, Clinician, ePatient
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When Liz found herself unwilling to floss, she knew that major depression was soon to follow. She’s going to need help.  She tells someone who knows how to help her before she loses the will to take any action. When I start to get dizzy, I know my MS symptoms will soon get worse.  Drinking water almost always helps. Water! Sometimes I feel like I’m going to cry. No real reason. Normal life. It’s a signal that I’m overtired. Nap or meditation is next.  It always works. If John feels stressed and bloated, a flare-up of his Crohn’s is soon to follow. He avoids certain food, takes acetaminophen, and stays near a bathroom. When Tiffany gets a rash she needs to see her doctor within a couple of days. If she has joint pain as well, it can’t wait a couple of days.  Tiffany has lupus.

Liz, John, Tiffany, and I recognize signals that trouble is coming and action is needed. We learned the signals because we are wired to take the step back and watch ourselves from a distance. We are mindful and curious about patterns. It takes time until the Eureka/recognition minute hits. None of our doctors ever asked us if we knew our signals or asked us about our patterns.  We are all four fortunate to have a friend or care partner who listens to our ramblings.  It’s during these ramblings, complaining, wondering, pattern-seeking, and problem-solving that we learned first one signal, then more. Two of us have clinicians that helped us figure out what to do once we told them about our signals. The other two tried stuff they learned from our advocacy associations and social media networks. We are so relieved to be building this tool chest of actions to take when we recognize signals. We are eager to discover more patterns and signals. It’s like turning over a rock and finding a twinkling gem.

Once we recognize a pattern, a signal, and an action that works, we can start to look for triggers. Triggers are stressors we know will be likely to cause a signal. Managing triggers is prevention. Liz, John, Tiffany, and I have a common set of triggers: emotional stress, inactivity, smoke inhalation, insufficient rest. We also have unique triggers.  They are many and varied.

Traditional doctor visits seldom contain routine time to learn about and discover signals, triggers, responses, and prevention. The electronic medical records seldom keep track of this learning, action, and response. It makes sense (silly, but makes sense). It’s time-consuming and it’s not in the many medical professionals’ training and workflow.  It’s up to us and our personal health team. I find that people who blog about their illness and their life challenges caused or made worse by their illness, almost always write about signals, triggers, and actions. You can find many on The Chronic Illness Bloggers here on Facebook. Liz, John, Tiffany, and I also keep track as we learn about what worked – Spreadsheets, journals, or blogging.

Not everyone has a pattern-seeking brain. Even if they do have a pattern-seeking brain, they may feel so bad that there’s little space to use it.  So it’s up to our care partner, our friends, our social network, to help us.  It’s liberating. It’s diagnosis agnostic (true for any chronic illness). It’s so totally worth the effort. What have you learned?

Dandelion Trigger Photo by Dawid Zawiła on Unsplash

Pattern Photo by Amador Loureiro on Unsplash

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  • Hi Danny, I just discovered your post on chronic illness bloggers and LOVE what you guys have discovered. I do the same thing 🙂 and it’s always a work in progress since these triggers can be, as you say, often really subtle and not easy to see or identify at first.

    In addition to cues that foretell an upcoming shift in symptoms, I have also found it helpful to identify triggers relating to past events and old trauma that may have caused a flare. Trying to get a problem solved (for blogging or a glitch in a software program, for example, but also from health care professionals at times) can sometimes be triggering for me if the other person is unable to help / doesn’t get it / passes the issue off as “not significant,” etc. For me it’s a trigger from early life experiences of not feeling seen / heard / able to get emotional needs met etc. I work with it from a nervous system perspective (usually some form of somatically-based trauma therapy or attachment work) and it’s made a big difference in decreasing the effects of such triggers (which cannot completely be avoided and occur often in everyday life).

    My own trauma history is very subtle (nothing really obvious) and so are the triggers. But what I especially love is that catching them can sometimes help me prevent or resolve a pending flare before or soon after it starts, or decrease the duration. Or, at the very least, understand why it’s happening. It makes the process all so much easier!

    Thanks for your post. Scheduled on my own blog’s FB page.

  • Sheryl says:

    Yep! We definitely try to nip problems in the bud, before they turn into that raging monster 😉

  • Susan Spivack says:

    I pressed submit before I identified myself above–this online stuff often happens too fast for me to keep up with myself!

  • Anonymous says:

    I love this one, Danny. So important to be listening to our own bodies when we have chronic medical conditions, but also for any person, particularly any aging person who has started having chronic aches and pains that are not too serious (yet) but can suddenly result in bad enough discomfort that walking becomes difficult, or using an arm or hand is suddenly impaired. Thank you!

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