When we met Lacie for the first time as she came into the studio for her consult, we felt a gentleness about her, a kindness that radiated and felt genuine. Oh sure, she had her “stories and struggles” we were positive, we’ve been in this business long enough to know that each woman we’ve ever had the pleasure to work with has a unique story, but her kind spirit left the lasting impression.
We worked with her, and got to know her a bit better, as we chatted in makeup and hair before her All Day session, we learned that beneath her kindness, she had an ability to be very flexible, more than most people. She explained that she could probably do some poses most people aren’t capable of. But she explained, that ability is a result of constant pain. An everlasting pain that will eventually result in her being bound to a wheelchair later in life, something she knows as fact and unavoidable.
She lives with Ehlers Danlos Syndrome, or EDS for short. We could’ve said “suffers from” however she’s so sensitive to not wanting undue attention as a result of her illness, that we chose our words carefully and respectfully. What is Ehlers-Danlos Syndrome? Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.
People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn’t strong enough to hold them.
She explains a little of what it was like as she was growing up:
“I had always had chronic pain growing up and just thought that was a part of life. Even as a teenager, I’d wake up with ankle pain, shoulder pain, back pain..things that I just thought everyone had, so I only mentioned it when I had an injury to go along with it. Which I was injured a lot. I just thought I was a klutz or whatever, called myself names and went along with my day. I had so many stupid injuries, from falling down the stairs for no reason in high school and spraining my ankle in the process to taking a step off my parents back porch and getting a 3rd degree sprain in the other ankle.. again for no real reason. I had scoliosis and “snapping scapula syndrome” diagnosed as a child and teenager, respectively..but it never explained the other weird things that would happen?”
As she got older, her struggles didn’t become any easier, in fact, she was often called “crazy” by medical staff and family when she explained the intense pain she was beginning to experience:
“As I got older I’d have bouts of extreme nausea where I just wouldn’t be able to eat. My parents had testing done and they put me on some expensive medicine and it went away for a while. But again, that would randomly pop up and cause a lot of issues for me. I suffered with a lot of mental health issues, forgetfulness, constant fatigue, that I just chalked up to being “fucked up”, as I’d say about myself. I had a lot of pain with my periods..I’d throw up and be sick to my stomach for a week or so as well, to which I was told I might have endometriosis. So they put me on the pill, which didn’t really help much. Then as I got older, I had multiple miscarriages and an ectopic pregnancy rupture (thankfully I knew then that I had EDS at least so I was able to tell my surgeon).
She went on to explain:
“I lived with random pain and never knowing what was wrong with me for years and years. I was told I was crazy when I started getting very intense pain around age 22 and they ended up putting me on so much medication I was unable to walk for months. I was in PT for a bit, tried all different things but the only thing that truly helped was hooping and lifestyle changes. I didn’t know what was wrong with me and my muscles were too weak to support my ligaments. My pain was causing me to fear movement and I let myself atrophy, and with EDS that causes everything to get worse.”
As we learned more about this and then reflected on the kind, gentle spirit she radiates, we were in disbelief that anyone with so much constant pain could ever be so calm, funny and yes…. kind…. to be around. It was clear that she definitely had a story to tell and it was one worth sharing!
Often times, if the world can’t “see” pain, it’s dismissed. The person is a crybaby or seeking attention and the pain isn’t real. Lacie is definitely not one who comes across as a “crybaby” in fact, she’s just the opposite. She presents herself as strong, brave, funny and yes…. kind spirited. It boggles our minds because a sore throat can send either one of us into a bought of the “fuck my life” if it’s severe enough. Perspective. It’s all about perspective which Lacie has definitely given us.
She explains how thankful she was when she was diagnosed:
“I was so thankful for my geneticist who diagnosed me, because I was told for 2 years that I was crazy (by doctors, family members..everyone basically) while I waited to see her (those kinds of appointments take forever to get, it took a year and a half to get a call from the waiting list for an appointment). So, as for how EDS affected me, I have chronic shoulder pain, multiple herniated disks throughout my back, hypermobile joints and neuromas in both feet. I was diagnosed with IBS as well and that was what they think causes the random nausea/stomach issues. I still have issues with forgetfulness and anxiety, which since EDS is a collagen disorder, it affects everything in your body, which then in turn causes mental health issues.”
In working with so many women who suffer …er… live with chronic pain, we’ve learned one thing: they all want to help others who deal with the same or similar afflictions. Lacie is no different.
“The only really sad pitiful part for myself is that I can’t remember a time when I wasn’t in pain, so it’s easier to look “normal” when your default state is pain, and I most definitely have a very high pain tolerance now. I guess I’m writing all of this so that people who have issues like me with invisible illnesses or chronic pain can also feel like they can be sexy and desireable, even if you don’t feel like it at the moment. Pain makes you feel ugly and unwanted, especially if you can’t escape it.”
We couldn’t agree more!
When we asked what her “take away” from her session with us was, she stated:
“I definitely have more confidence now but I definitely didn’t expect to want to come back again!”
Joe and I say it all the time, we’re blessed and grateful to be able to meet and work with so many brave and amazing women who let nothing hold them back from experiencing life. We’re constantly being taught lessons as we work with these women and we’re told so often that we are inspiring, only we find the women we work with inspire us just as much if not more. These amazing women give back to us so much more than we would ever imagine!