Check out today’s blog from Health Activist Award Winner, Ashley.
1. Why did you become a Health Activist? Tell us your Health Activist story!
I am often referred to as “feisty.” You can blame it on the red hair (like my husband does) but it’s fake: I was born this way. And though my chutzpah has gotten me into trouble once, thrice, or a hundred times, it has been the driving force behind my life-long quest to answer one question: what is wrong with me? Like The Little Engine That Could, I just kept chugging up the mountain, seeking answers, rejecting the ones that didn’t make sense, and never losing hope that I would find an explanation for what ailed me.
Of course, I am more than just a medical diagnosis, and the obstacles I have faced have ranged from bullies, to broken hearts to the business world. That same personality has come swinging out of the corner every time to fight my battles. I have always been a Warrior who takes things head on – not an Ostrich who puts her head in the sand. I consider this to be an advantage…sort of. This struck me the other day, when someone I met said, “Your health problems kind of remind me of my relative, but she is so whiny about everything. I always thought she was just making it all up.” We all know those people, and it can be hard to sympathize with them after a while, right? They can be draining! “She may be whiny about everything,” I said. “And she could still not be making this up.” Disease does not care what your personality is – it strikes regardless of whether you have the coping skills or not. My personality isn’t “good,” and hers isn’t “bad.” I have stopped trying to put things into “black & white” answers, and find, rather, that just about everything has its shades of gray. “Everyone you meet is fighting a battle you know nothing about. Be kind, always.” The truth is, I have struggled for years to not be seen as “whiny.” I take pride in my strength and resilience, preferring to be known as “stoic,” rather than “sensitive” when it comes to medical issues. And yet, I am learning that there has to be a balance (just like most things.) Too much strength, resilience and stoicism can be overbearing, isolating, and difficult to duplicate, especially now that I have two little patients in my home watching my every move.
I started this blog so that people to know that they are not alone, and to try to prevent them from suffering years of misdiagnosis like I did. But I also started it to inspire the Warrior and the Ostrich in all of us, and the range in between. I model strength for people on days when they need it. I also model self-doubt, side effects, vulnerability, gross facts, mistakes, TMI, stress, losing it, bed-ridden days: all of the triumphs and turds that go with this Life! I didn’t have those kinds of role models when I was struggling early on in my journey, so I needed to become that person for other people. Most of all, I want to make people laugh through it all. Laughter is one of the most powerful pills in my medicine box, and I love to share it.
2. What are your goals for Health Activism in 2015?
My goal has always been to cast my net as wide as possible so that people see my story, and then see their story in mine. The more people I catch who are misdiagnosed or undiagnosed, the more of a success I become. All of the jokes and entertainment is just my way of expanding my reach and biding my time until I find those people. Who do you know that look likes me? Please share my blog and my Facebook fan page!
But don’t worry: you don’t have to have EDS for us to hang – just a love of laughter and an imperfect Life. Most of my fans have a variety of issues, so follow and share me anyway. I am more than my condition, and I talk about lots of different things.
3. What awareness event or effort are you most excited about in your condition?
I am thrilled to be going to my first Ehlers-Danlos National Foundation Conference this August, which is being held in Baltimore, right near my home. I am bringing my children, and they cannot wait to make new friends who are “like them.” I look forward to learning more about the other types of EDS so I can advocate for those patients as well. (I have the classic type, or hypermobile. There is a skin type and a vascular type.)
4. If you could tell others a few things about your condition and your community, what would you want them to know?
EDS is considered a “rare invisible illness,” but it is more likely that it is just rarely diagnosed. Many of us fall though the medical cracks for years. If you know someone who can do “party tricks” with their fingers, wrists, elbows, shoulders, etc., they are likely someone who is on the connective tissue spectrum. People who have chronic dislocations or injuries of joints, fragile skin that bruises, tears or scars easily, GI problems, chronic headaches, dizziness, a history of whiplash (with no car accidents,) TMJ, and any variety of chronic joint pain, and have previously been undiagnosed with a specific problem, but are rather collecting diagnoses, are a likely candidate for having EDS. However, each person with EDS looks different, so if they don’t match up exactly with the profile, that’s OK! For example, many of us seeking a hypermobile diagnosis are not very flexible, having been repeatedly injured, and are now experiencing stiff muscles as a result of chronic ligament subluxations. It can be hard to recognize and diagnose the older people become. Geneticists are the practitioners who would make a diagnosis, and they do this by physical exam, as there is no blood test for anything other than the vascular form of EDS. My best advice is to stay connected with other people in the EDS community, find practitioners like physical and massage therapists who have experience with hypermobility, and do not give up hope that a diagnosis will come! It took me two different Geneticists to get a proper diagnosis.
5. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?
“To the world you may be just one person, but to one person, you may be the world.”