Because I’ve never really discussed my personal issues & struggles with my family and friends (still do not for the most part), I started my personal “Living with EDS” Instagram account a few years ago (how this site eventually got started as well). Additionally, I felt like I could not really be who I was in the EDS community either. I love health and wellness, I studied it in college, and live it every day – personally and professionally. I’m not one to vent all of the time, talk about how much EDS sucks and focus on my suffering, even in my personal life. I’m not suggesting that all others deal with EDS this way, but doing so has never gotten me anywhere and it’s never really made me feel better. That’s my personal opinion and what I feel works best for me. I much rather focus on what I can do, versus what I can’t, because … What the hell else am I going to do? If I’m going to keep living, I might as well find a way to enjoy it and help myself in any way that I can.
Obviously, I can’t say my viewpoint is always über popular in the EDS community. I know that and I’m totally cool with it.
I’ve kept my EDS Wellness page to strictly sharing of facts, information and resources, as well as patient advocacy and some wellness coaching. A lot does crossover with my personal life; however, that has a lot to do with what I do with my volunteer work with EDNF, my professional experience working in the medical field, and my degree in public health.
For all these reasons, I felt like I had to hide and I couldn’t link my personal living with EDS account to my professional EDS accounts (and business – EDS Wellness). Additionally, I felt like I needed to keep EDS Wellness separate from my volunteer work with EDNF, even though I’ve always had a ton of support for what I do and it doesn’t take away from their mission – it only adds to it. Even still, being an EDNF volunteer was another reason that I felt like I needed to hide.
My personal philosophy about living with EDS, has a lot to do with not wanting to be miserable and bedridden around my kids. I am fully aware that I can’t control everything, but I will fight like hell to do what I can do. I want to ensure that I’ve done all that I can do, in order to ensure that bedridden doesn’t happen; or, at least not for failure on my part from a lack of trying.
Growing up with a grandmother and a mom, who were mostly bedridden and couldn’t do much without a ton of effort and exhaustion, has also been incredibly motivating. They also didn’t try too hard at all. They succumbed. However, my mom did fight like hell when she was battling breast cancer and then amyloidosis. She was incredibly strong and was able to live a few more years, but her body was tired and weak from years of lack of exercise, stress, horrible eating habits and previous alcoholism.
I’m not suggesting that’s what caused either illness, but her lifestyle certainly didn’t help her body begin its battle(s) in best fighting form.
The name for my personal living with EDS account, was picked because I wanted a name that epitomized who I am, what I do and what I believe in, yet one that didn’t use my really name at all.
The name is Strength/Flexibility/Health/EDS or SFHEDS for short and it has since grown into being a big part of what I do professionally as well. My SFHEDS account still is a great outlet and a way for me to separate how I personally manage living with EDS and why. Recently, I finally changed the name of my personal Living with EDS FB page to my real name and added my real name to the same account on other social media platforms. I figured that I’m not in hiding any more – right? Especially not since Our Stories of Strength – Living with Ehlers-Danlos Syndrome was published.
Why am I sharing this?
I’m sharing this because today is the first day of Invisible Illness Week. Invisible Illness Awareness Week is all about helping to shine a light on invisible illnesses – making our invisible, visible to those outside of our community. It’s about helping spread awareness on our invisible fight.
However, it wasn’t until the last year that I realized that as much as I was helping the EDS community, I was still hiding from myself. I’ve said this before in Our Stories of Strength – Living with Ehlers-Danlos Syndrome – How could I ask others to share their stories, if I wasn’t true to my own?
Being true to my own story would mean not hiding behind an anonymous name on my personal living with EDS accounts. It would mean sharing what else I do to help the EDS community, as well as being comfortable with how I’ve been able to persevere, despite struggling with my own invisible fight.
My way may not be the way for many, nor the norm. Some have even passed judgment on the fact that I started a business to help EDS patients and the healthcare practitioners who help care of us, and I’m sure there will be plenty more. I’ve also heard plenty of times from people in our community and others within the greater chronic, invisible illness community, that I look too good to have a chronic, invisible condition. Umm… ok? Really? Isn’t that our whole message? Not to judge someone based on what they look like, yet those in my own community are judging me?
But, the point is to not hide – either from others or from ourselves.
The point is to help make our invisible fight visible, so that others understand.
The point is to not hide our full stories – the good and the bad.
The point is to not keep our invisible fight invisible, out of fear of ridicule and judgment from others.
Invisible Illness Awareness Week to me, means making sure that I stay true to my own invisible fight in everything that I do – living it, sharing it and not hiding behind any aspects of it.
It’s about being proud of what we’ve been through and how far we’ve come.
What is an invisible illness? An invisible illness is defined as “chronic illnesses and conditions that significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.”
The founder of Invisible Illness Week, Lisa, asked me if I would participate and I am more than honored and excited.
I will be speaking (virtually) on “Fighting for a good attitude” on Wednesday, September 30th at 10am PST. The talk will take place on the Invisible Illness Week FB page.
Want to join in?
Invisible Illness Week is hosting the 2015 #MyInvisibleFight Photo Campaign. The purpose of this campaign is to share the reality of all the little things that are #invisiblefights each day of living with illness. To read the instructions and details & how you can join in, go here.
Invisible Illness Resources:
– Invisible Illness or chronic illness? by Lisa of Invisible Illness Week via Huffington Post
– 22 Secrets from people who are waiting for a diagnosis by the Mighty
– How do you deal with relatives who do not understand your chronic illness? by Huffington Post
– What You Say To Someone With Chronic Pain And What They Hear via BuzzFeed.com