The One Piece of Advice Anyone With Illness Should Remember
Before my diagnosis, doctors visits where filled with words such as “complicated,” “puzzling case,” “it’s in your head,” or “we just don’t know.”
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
These words only left me feeling discouraged, confused and frustrated. There are only so many times a person can cope with doctors throwing their hands up completely puzzled, only handing you a prescription that might help. Eventually I settled with the reality that there would always be unanswered questions.
But then the day came when a doctor said, “You have Ehlers-Danlos Syndrome (EDS).”
All my medical challenges had an explanation, and a prior misdiagnosis was erased from my medical chart. Those initial moments were filled with relief, but then the doctor stepped out of the office. The tears which had welled up in my eyes came rushing down my face. I felt alone both literally and figuratively. Despite living with the debilitating symptoms for many years, there was something about getting the official diagnosis that knocked me down. With tears in my eyes, I took slow, long breaths.
After the initial storm of new diagnoses, we the patients are left to figure out how to live well with our condition(s). Reality hits. The questions fill your mind, and the emotions settle in.While doctors can provide diagnoses, what they don’t provide is a manual on how to cope with our new reality.
Unless they themselves are living with a chronic illness, they likely aren’t going to be able to understand the challenges that come with coping with a chronic condition.
There are licensed professionals who specialize in chronic illness, social media support, local support groups, national organizations, even self-help books. However, it is not the words that you read (even in this post) or the advice someone gives you which will allow you to accept your “new normal.” It has to come from within.
Breathe.
It sounds simple, but our breath is our most powerful tool. Although breathing seems like a an offbeat answer to coping, it will be the one tool to help you (and your loved ones) through every peak and valley these diagnoses may bring. It will help you feel in control when it feels like your body is falling apart.
You don’t have to figure it all out at once. Your breath will help you through the painful moments, the moments when you want to give up and those moments you feel challenged. Your breath will calm you when you feel overwhelmed, and will give you the power and strength to self-advocate. It will be your best friend during the moments you mourn your “old self” or limitations. And, it will be there in times where it feels like no one in the world understands. Your breath will carry you through every disappointment and will guide you to every victory.
Try it: Inhale, 1…2…3… Exhale, 1…2…3
EDS affects everyone differently. There’s not a one size fits all book on the steps you need to take, or the challenges you may have to overcome. But, all of us need our breath, even in the most painful moments when it actually hurts to breathe.
Your breath will allow you to be centered and calm, but more importantly will teach you that you, and only you have the ability to get through each challenge.
Find your breath, for it will help you find the path to acceptance of your new reality.
Candice is a nationally certified counselor, certified school counselor, and children’s yoga Instructor. She is passionate about making yoga accessible to all children– through advocacy, education and bringing the practice of yoga to children who experience chronic pain, illness, and/ or disabilities. After years of unanswered medical questions, she received the primarily diagnosis or Ehlers-Danlos Syndrome in 2015, but also lives with other comorbid conditions related to EDS.
candice-clifford