We took these the other night. 26 years. He was holding onto to a few of my fingers with one hand and taking pictures with the other hand. I didn’t notice why at first – or ask. Holding my hand lightly while doing something that isn’t uber comfortable for me isn’t abnormal – especially when it’s something that puts the spotlight on me. My issues. My reality. Our reality. My past. Our future. The challenges I’ve faced. The struggles we’ve both endured – separately & together. The intense pain – both physical & emotional. The fear & uncertainty of the present and the future. The reminder that we have 3 babies who also struggle – all differently. The truth behind what I do and why I do it – pretty much all personally funded (for years). The awareness that no one else understands “the real story” – we are the only ones who truly “get it.” The loneliness and sadness felt because there’s still so much unsaid, less and less shared and even more ignored. The anger and resentment that go hand in hand when you’ve been fighting for years to both survive (physically, mentally, emotionally, financially & spiritually) and save your marriage and family at the same time. It was his idea – a picture of his hand holding mine. He said it shows that we have been in this together since the beginning – since I was first diagnosed. I wasn’t diagnosed – we were diagnosed.
It took 26 years to link and properly label a lifetime of classic textbook and more-than-obvious signs, symptoms, and related issues. Most were overlooked or dismissed by the few providers I saw, and nearly all were questioned, ridiculed or ignored by those closest to me. The extreme fatigue &
pronounced vision issues were noticeable before I could talk. Both were full-blown daily issues, in addition to horrendous, I-can-still-feel-the-pain ear infections, by the time I was 3yo. The eminent conditions and issues of focus have changed over the years, but the frequency and consistency of the daily struggle have remained. There’s always been a laundry list of collected pathological chronic conditions – none misdiagnosed, just swept under the “Kendra’s Body is Weird” category, now referred to as “comorbid conditions.”
Scandinavians are known for admitting little and suffering a lot – it builds character and strength, or so it’s believed. The Vikings ignored and conquered, and I was raised to do the same. I did start telling my parents to take me to the doctor, versus waiting for them to take action out of concern. And while the “suffering is good for you” mentality didn’t help me physically or emotionally, nor did ignoring my issues make them miraculously go away, it did help mentally. I learned to advocate for myself and to listen to my body earlier than most. I learned to compartmentalize, the importance of self-care and that if I was moving I had less pain. I learned to cope, to adapt, and figured out ways to focus on living while managing “it.” I learned that self-empowerment, self-efficacy and the power of your mindset is critical for living well. I learned alternative strategies to function physically and to do well in school.
I’ve only listed my personal collection of “labels” all together 2x – in a personal blog post & on a graphic. I’m not sure why that is, other than I made a choice very young to fight against “it.” Whatever “it” was, it was clear that my family, especially my mom’s side had “it” – my grandmother and mom being the two who seems to suffer the most. By high-school, it was obvious that I was “built” like them – reinforcing my commitment & passion for “changing my DNA.” My gram, “Grandma with the pills” as she was often called, died on my wedding day. My mom passed away two years later – 10 days after I told her that we were pregnant with our first baby. Both were mostly bedridden, sick & in chronic pain my whole life – something accepted as inevitable in my family. Both had undiagnosed EDS (or another hypermobility related syndrome) and clear mast cell issues, despite suffering far too much and too long from countless related issues & conditions.
The work I do and why I do it is because they suffered undiagnosed & alone. It’s for my children. It’s to provide hope, share resources and develop solutions for restoring function and living well. EDS Wellness’ mission is based on EDUCATION, DIAGNOSIS & SOLUTIONS. Our vision is to decrease the time to diagnosis, increase the quality of patient care, improve patient outcomes & ensure that no one struggles alone.
First posted on Instagram. See a gallery of other pictures below. To learn more about the #MyEDSDiagnosis campaign in honor of EDS Awareness Month, please visit Laura_lee_mindbodyeds on Instagram.
