Guest Voice: With EDS, I accept what’s challenging, embrace what’s possible
It’s important not to let a diagnosis consume your identity
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As I sit here for the fourth hour at the infusion center, I feel a wave of gratitude wash over me.
I’m thankful to have hydration and other infusion options to help me power through difficult days. It has taken me years to accept that I sometimes need supportive care and to come to terms with my current health circumstances. When you’ve once lived a more able-bodied, active life, you learn to cherish the small bursts of life-giving energy when they come.
Living a full, busy life with hypermobile Ehlers-Danlos syndrome (EDS) and its menacing sidekicks — postural orthostatic tachycardia syndrome, dysautonomia, and mast cell activation syndrome — makes each day a challenge to navigate with care. Burnout, crashes, flares, bone-aching exhaustion, and muscle pain can loom behind even the smallest decisions.
Living purposefully with EDS
While navigating life with EDS is undeniably challenging, it’s not without purpose or possibility.
Over time, l’ve created a routine that helps me manage many of my symptoms. For me, it starts with maintaining a positive, hopeful attitude, which can surely make everyone’s day a little brighter. Focusing on uplifting those around you while ensuring you don’t wear yourself out can be a delicate balance, however.
Consistency has also been key. Striving to stay adequately hydrated with remineralizing water (clean water with mineral sea salts), purposefully eating nourishing foods when hungry and stopping when full (easier said than done), doing regular Epsom or sea salt soaks, and following an early bedtime routine all make a significant difference in how my days unfold.
I’ve learned to rest when I’m fatigued, usually with my legs quite elevated, if possible. I used to push myself to be the version of my old self I miss so much, but that’s not where my body or my health are right now, and that’s OK.
Accepting this season of life with grace and love hasn’t been easy, but this vessel I’ve been given deserves good stewardship. Life is a blessing. Our bodies tend to respond positively to rest, respect, and optimism, and negatively to chronic stress and the pressure to run on fumes. I’ve learned that lesson the hard way.
It’s OK not to be perfect. It’s OK not to say yes to every demand on your time. Staying connected with a trusted team of doctors who truly understand your needs is invaluable. Take time to care for yourself so you have enough love and energy to care for others.
I also believe it’s important not to let a diagnosis consume your identity. There’s a fine line between being informed and being overwhelmed. Doomscrolling through endless medical information can add stress that may trigger unintended flares. Believe me, I’ve been there.
Instead, I try to engage in little activities throughout the day that bring me joy, and I cherish a calming bedtime routine each evening. It’s easy to fixate on pain, loss, or frustration, but dwelling there is a waste of this precious life.
Find purpose through the pain. Accept the present. Hope for the future. Bless others along the way. It doesn’t make the journey effortless, but it truly makes life better!
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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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