During Invisible Illness Week in 2015, Lisa, the founder of Invisible Illness Week, asked if I would be a guest speaker for a virtual discussion/chat on the Invisible Illness Week Facebook Page. My topic was about fighting for a good attitude – a fitting topic for who I am and the work that I do. However, I can’t think about fighting for a good attitude without thinking of the amazing members of the EDS Athletes Facebook Group.
Before my Facebook chat for Invisible Illness Week in 2015, I posted a question about the topic of staying positive and having a good attitude for those in the EDS Athletes group. Below are 11 quotes from various members of the EDS Athletes Facebook group on what “fighting to stay positive” means to them.
“I think that being positive is what allows me to stay in control over a situation that easily has the potential to overwhelm my life. This often means modifying goals/expectations to meet my constantly changing needs, but ultimately I know that I have a lot of tools available to me and that I am capable of accomplishing a lot. There was a definite turning point when I was told by one of my specialists that my problem was that I was too “fixated on my baseline” and needed to work on acceptance. While his intention was to get me to stop nagging him, it actually lit a fire inside me and got me to dig my heels in and fight like crazy not to let my diagnosis define what I could/could not do. While pacing and rest are important for me (and I have my fair share of bad days), pushing through the tough stuff even when it gets really hard has been empowering and has come with far greater benefits/fewer side effects than anything a doctor has prescribed for me. Also, doing stuff that so-called experts say you shouldn’t and rocking it is sort of fun too…” – Emma
“Kendra, as you know I’m not cut from the same cloth as most. So the way I look at, and deal with my invisible illness and injuries isn’t always mainstream. I don’t really consider myself as having an invisible illness, even though that is exactly what I have along with my injuries from my military service. I have come to think of my disorder or illness and injuries as a challenge. And I like a good challenge! You and I have spoken about finding our “new normal” after being diagnosed, I now take this whole thing as a personal challenge. I try to make myself better everyday. The days I accomplish things that ordinary, everyday fit and healthy people do I consider that a good and positive day. The more of those days I can string together the more positive I get about my hand that was dealt to me. The days that I struggle, I try and think about the days that I have “kicked EDS’s butt”. As long as I remember that I am capable of those good days my spirit stays high and I have more ammunition to fight our disorder. I have turned my “new” life into a challenge. Me being able to go out and play disc golf with normal healthy people and to sometimes win with them never having any idea of my disorder or past injuries gives me such a warm and fuzzy that I have no choice but to stay positive. As long as I am striving to do something better each and every day I will be great. That can even be something like dealing better with a horrible day (something we all have). I just try to be all better person every day and the positivity will follow. This is just a personal thing for me. If I turn it into a challenge, I have no choice but to try and prove that I am up for any challenge thrown my way. It’s almost like almost game. You might not win almost of the time but when you do, you feel really good about yourself. And when you don’t win, you can take the defeat and learn from it and make yourself better. Just my 2 cents.” – Kyle
“For me staying positive means not giving up on my goals but instead making appropriate accommodations to achieve them comfortably. For example, i hope to write a novel but have a lot of hand pain. Rather than give up on writing, I adjust and use finger splints, wrist braces, and voice recognition software.” – Jess
“For me, the root of coping and managing my EDS is acceptance accepting that I have it, accepting that my body is as it is at this time. From there, I can work on it and keep hopeful and then it comes down to commitment. I decided to make working out like cleaning my teeth. I do it regardless of how I feel. This in reality means prioritising it very highly because it takes a lot out of me. But I believe it is the best thing to do if I look at the long-term. I have literally zero medical support and not much support from my family so have had to draw on a lot of inner resources and do a lot of work learning and experimenting to find what helps and what doesn’t.” – Katherine
“Staying positive to me is just not wallowing in self-pity. Focus on what I can do and do it. If I find something I want to do that makes me sublux, I find a modification to DO IT. Bitching and moaning about it, does nothing to fix anything and just puts you in a place to focus on the negative. I do have a motto “Shut up and do it”. That goes for my able-bodied friends too.’ – Laura
“I used to live up to the label of my diagnosis. I was around 10 and was “bubble wrapped” by my mom and my doctors. Today I do my best to live up to what I want to accomplish. Many do not see my diagnosis and I prefer it that way. On days I am slow or struggle it’s hard but I just keep on keeping on. An Ironman quote I like. “All things are possible”. Training for my first Ironman if I get a spot this year. My training friends do not know my diagnosis. Just see the rock tape on various spots. (con’t) Katherine Baldwin /react-text react-text: 714 /react-text This is one of the frustrations I find with having an unaccepting family. It is necessary for me to talk about my symptoms and limitations on a regular basis because they still do not understand and pressure and accuse me of being lazy, selfish and so on. Sometimes I start explaining, fatigue for example, and then end up saying “I don’t want to think this all through now, I don’t want to talk about it, don’t make me have to tak about it”. But even my husband will say things like “I don’t understand why you wouldn’t be able to manage that.” – Heather
“I have stopped worrying about the acronyms that get added to my chart and instead focus on what I CAN DO. Sadly, in order to accomplish this I left almost every “support” group I had been a part of. I was giving way too much of myself and personal power away. Instead I worked to erase the “door mat” tattoo off my forehead and focused on what *I* need. I lost people along the way. I mourned their loss but like a boat throwing useless baggage overboard I realized my buoyancy or resilience increased proportionally. I used my newly found free time to focus on modifying what I loved to do and how to make it safe to pursue.
I invested in a recumbent trike. It was a hefty price tag but I refer to it as my “lifetime gym membership”. It put the wind back in my ears and it wasn’t until I felt that again that I realized how much I had missed it. My primary doctor (actually an amazing P.A.) and I continue to view ourselves as the co-captains of my healthcare team. We let others try out for the team. Some are cut immediately. Others do their part and then we move on. A precious few become integral parts of the team and now collaborate to keep me as functional as possible. A large part of my progress was also moving on to a new mental health therapist. My previous therapist helped me through some incredibly difficult circumstances but was not helping me move any further forward. My co-captain suggested someone. I knew he was my guy when he asked a few specific questions on our initial phone conversation. Here was someone ready to call a spade a spade. I needed that and his practical approach to understanding how most people operate. In his words, “you are THE outlier.” I believe that encompasses all of us battling invisible challenges in our own unique ways.
Our illnesses and conditions have changed us. Not always for the worst IF we can learn to embrace some new points of view and understand how OUR view of the world differs from the majority of others. His book suggestion of “Codependent No More” was a literal “how to” book for me. It explained what I always felt but couldn’t voice. Most importantly it gave me the tools to understand others and to adjust MY expectations accordingly. As a result I was able to remove my “door mat”, give you the shirt off my back vulnerability. That freed up mental energy and time for me to work on me again.
The result of that is me approaching 40 with a medical record that even HOUSE M.D. writers would never believe plausible, BUT I KNOW I am not those diagnosis codes. I am me and I am worthy of my own time and energy.” – Chris
“Staying positive has everything to do with reframing and thoughtful word choice. “I have to tape my knees or they dislocate” vs “I tape my knees so I can be more active”. Like wise, the difference between, “I have to use forearm crutches because I’m in so much pain,” vs “I use forearm crutches so I can do more.” Figuring out how to phrase things to focus on what I CAN do rather than what I can’t is really important to keep my mind focussed on what IS working and my body motivated to keep at it.” – Justine
“It was funny. I was reading through some posts from fellow EDS athlete partcipants @8am. I was soaking in warm water, waiting for a muscle relaxer to unleash me soI could stretch a bit and then tape myself together where needed today. The nerve pain was staggering but I was actually in process of mind choices for words and gratitude.
Finding gratitude that I had kt tape, medications that some don’t, Dr who support me, people who care, ability to stand today. I have to make sure I practice daily a mindset of thanks because I could get lost in this space of dark matter. I stayed focused on my gratitude of having kt tape Today. It was my glue. Tomorrow it may be a beautiful meal, the sunset, that extra lap I took when I didn’t think I could, or that text from a friend but finding that daily gratitude in the morning helps me focus and my keep internal language positive, without comparison.
I guess they call it mindful meditation.” – Monica
“Being positive for my children and husband is difficult as I don’t walk in their shoes. I do however try to research as much as possible so that I can answer the 7 and 10-year-old questions and be their advocate for the “invisible” pain that they often feel and can not always describe.” – Marcia
“For me I think it’s about taking control of my own body and health. Yes, it’s not fair but neither are a lot of things that people have to endure, I consider myself very fortunate to be able to afford and access help that is out there. Being passive and waiting for healthcare professionals to help you and then being angry if they can’t achieves nothing, I need to take control of the situation and once I stayed with very small amounts of regular physio and exercise I saw how much power I had to affect and change my life for the better, and that’s an addictive feeling! So while I allow myself time to feel down and wallow every now and then I just have to remind myself that I alone have the power to change things and that’s pretty f__ing cool!” – Kim
“I believe that staying positive is my most important treatment option. Even if the pain is excruciating I find that using the mind to my advantage always helps…sometimes it’s all I have when nothing else works. My EDS is not invisible as I use a power wheelchair…still people tend to judge because I am not paralyzed. I use it as a way to educate people about invisible disabilities and the pitfalls of judgement.” – Carol-Ann
The Ehlers-Danlos Athletes group on Facebook was founded by Laura, who write for Fat Girl’s Iron Man Journey. Laura founded the EDS Athletes group for anyone who has a hypermobile body and is looking to stay active safely, become active, or is an athlete” already. Laura was also in the Joe Stone Documentary, ‘It’s Raining, So What?’.
Link to EDS Athletes Facebook Group – https://www.facebook.com/groups/EDSAthletes/