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Now that I'm setting out to help people communicate about chronic illness issues, it's time to tell my own story. Since there are so many ways to tell a complex story, it can feel difficult to know where to start. Chronically ill people commonly dismiss their own daily symptoms for years before conceiving of themselves as "chronically ill." I was one of those people.
I've likely had chronic illness since I was 13 or 14 years old, when I first began to feel faint on a regular basis. But is that where my story begins? At that time, my pediatrician, friends, and family alike told me my symptoms were normal — anyone could become lightheaded if they became too hot, too anxious, or if they stood up too fast. I learned to navigate around lightheadedness by standing up slowly, drinking lots of water, flexing my calves, and sitting if necessary.
I didn't know my lightheadedness was an illness issue until a cardiologist diagnosed me with POTS at age 37. For almost 25 years, I'd thought everyone was trying not to faint every day. I'd stopped telling people about those symptoms years earlier, not wanting to look like a weakling for being troubled by something everyone else apparently dealt with easily.
I first started thinking of myself as having chronic illness around age 25, when my once-or-twice-a-year migraines became once-or-twice-a-week migraines. Later, I learned these migraines were primarily a side effect of hormonal birth control, though my gynecologist, primary care physician, and pharmacist had insisted there was no connection when I'd asked.
If you experience medication side effects for two years straight while your doctors tell you it's just the stress of grad school, are you chronically ill?
My current therapist calls the experiences I had with POTS and migraine "medical trauma." I experienced physical symptoms, but was dismissed as anxious. I didn't push back much because, well, I was also anxious! When medical authorities told me my symptoms stemmed from anxiety or were normal and nothing to worry about, I believed them. The more I meet and speak with people who have chronic illness, the more I realize these types of experiences are the norm.
My chronic migraines left around age 27, after I quit the pill for good. Fibromyalgia appeared in their place shortly after. Apparently, the non-stop headache pain likely altered my nervous system, causing "central sensitization syndrome," which often makes what feels like normal sensation to the average person painful. In addition to physical soreness, I became sensitive to certain lights, sounds, and smells.
Because my fibromyalgia symptoms could often be either triggered or alleviated by lifestyle factors, and because the world at large was reiterating that fibromyalgia was a fake disorder the year I was diagnosed, and because I'd had both panic disorder and generalized anxiety disorder at different times, I spent years questioning whether or not I had a "real" illness beyond anxiety and continued keeping most of my symptoms a secret.
So does my story start at age 13? Age 25? Age 27? Age 37?
There are parts of the story I've left out, because I don't want this post to be too long, but the truth is, most people with one chronic illness have multiple chronic illnesses. A quick overview: I have obstructive sleep apnea and sleep with a CPAP machine. I was diagnosed with IBS, then non-celiac gluten sensitivity, and then SIBO. Doctors suspect I have MCAS, but accurate testing has never been available within my insurance network. I've had iron and vitamin D deficiencies several times. Treating them helps.
Throughout all of the ups and downs I've experienced with chronic illness, the communication issues and related emotions have been as hard if not harder to deal with than the physical symptoms. It's no fun to be in pain 24/7, but it's absolutely devastating to realize someone you love doesn't believe you're actually experiencing that pain. It's difficult to feel lightheaded regularly, but to realize doctors don't want to treat that lightheadedness because they believe it's just stress can trigger new levels of hopelessness.
I'm 41 now. I still struggle with communicating about chronic illness. Who needs to know about my illnesses and symptoms? How much or how little should I share? What way of opening up feels best or is likely to result in the most positive response?
I suspect I will continue learning and growing and changing my approach to communicating about my symptoms for as long as I have them. I don't believe people with chronic illness should have to perfectly craft their words in order to be listened to and believed by doctors, loved ones, coworkers, etc., but in my experience, having good communication skills can greatly help.
I'll keep telling bits and pieces of my chronic illness story, at least as it relates to communication and self-expression, in future blog posts. Please don't hesitate to comment if something resonates, or if you want to share about your own experiences.