Thriving with EDS – Needing Support- Stepping into “The Solution”
I quickly learned that only way to survive with EDS is with support. No matter how independent and self-sufficient I wanted to be, I needed others. Then, I discovered the only way to thrive living with EDS is with good supports and solid structure. The longer that I lived with this condition, I ended up needing support with practically everything. This was a very humbling experience and it became emotional for me. Every time I had to ask for help, I resisted it and ended up in some kind of sadness and tears. I missed being grateful because I was always feeling so much self-pity and defeat.
My list of supports to survive EDS and live a quality life became extensive. I needed supplement support with multi-vitamins and extra vitamin C. I need support carrying things. I needed knee supports, neck supports, back supports. I needed surgical supports. I also needed emotional support. I needed support in creating a strategy for survival. On some of my bad days, I needed support with keeping a positive attitude.
Not having support led to increased anxiety. The level of anxiety I was having always correlated with how much support I had for whatever health challenge was happening. I learned that to curb my anxiety, I needed to ask for help. Sometimes, a lot of help. Having people who knew about my condition and were reliable helpers for rides and listening mattered. I worried less when I knew that someone “had my back.” My problems arose when I tried to manage my condition without support. For a short time, I rebelliously practiced denial and attempted to forget that I had EDS and live like everyone else only to I hurt myself trying-mostly with injury or illness. My pride often was hurt when I hit a wall and found my limitations very limiting.
I had another obstacle to getting support. It was the shame I carried deep inside about my condition. I was ashamed to be young and needing so much help. I had to release shame and offer myself forgiveness for feeling bad about myself. Truth was, I was embarrassed to be me. Because it meant I was fragile, compromised, delicate, and vulnerable. I wasn’t what the world of overachievers was idolizing. I wasn’t what success was supposed to look like at my age. I wasn’t a tough warrior that fights, pushes through, and tackles life with fierceness, fire, and force. I was the opposite. Cautious, concerned, worried, fearful, and living life “low key” to avoid the spotlight and to avoid embarrassment. I didn’t want to expose myself.
My other problem was that I was surrounded by unsupportive people who seemed to target a weak, kind, and caring person like myself. The problem with those people was that they weren’t reliable and often criticized me for not being able to do whatever it was they wanted. These were the kind of people who used subtle forms of peer pressure. And I had a habit of caving under any pressure. Sometimes, I tried to force myself to tag-a-long to events they wanted, only to find myself exhausted and overextended from trying to keep up. I could have searched for people more my speed and pace that would have supported me. However, I wasn’t aware that I was being targeted for the simple fact that I so badly wanted to be like them. I was susceptible to toxic, pressuring people because I wanted a life that didn’t belong to me. I wanted to be normal. I wanted to live a normal life. I wanted to do what normal 20 and 30-year-olds did. I wanted to be like them. I just couldn’t. I physically couldn’t. I didn’t know that I had EDS and I certainly didn’t know who I was.
When I finally let that go, I let a lot go and started designing a different life and vision for myself. A vision that revolved around who I am. A lifestyle that was supportive for me. This is when I stepped into The Solution and out of all my problems. I started supporting myself. I started asking for support. I stopped shaming myself. I stopped hurting myself with “shoulds.” I sought better surroundings. I supported myself with common sense, ergonomics, and logic. I supported myself with self-compassion, self-forgiveness, and self-understanding. I stopped blaming myself for the genes I was born with. I supported myself with self-love. And that made all the difference.