View from Inside a Pandemic | Turner Syndrome Foundation //

Grief and Turner Syndrome: View from Inside a Pandemic

blog series with Katie Steedly curling

Written by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF

Everything Feels Different

As someone with Turner Syndrome, how do you cope with grief during a pandemic? “Normal” coping is a debatable idea to begin with, but it seems to have changed to an unrecognizable list of questions that have no sure answers. Given the current circumstances, the ground might feel more like quicksand than solid dirt. Routine is now defined by disruption. Our daily choices seem small against the hugeness that faces us. Turner Syndrome coexists with all this, as it always has, with life’s fundamentals–like change, death, and taxes. But right now, it feels more extreme. A giant spotlight shines on all fear-inducing aspects of life that are normally just a little mind numbing.

The Turner Syndrome Path

Turner Syndrome, and perhaps all chronic conditions that require day-to-day attention, strangely prepare us for coping with grief during this pandemic. We are used to navigating insecurity and fear like stealth warriors, turning to our community of loved ones, doctors, and others for support and guidance. We individually do the hard things that we are now being asked to do collectively–synthesize complicated health information and make big decisions, face the reality of physical and social limitations, and navigate vulnerability.

Stages of Grief

Women and girls living with Turner Syndrome and the people who love us are familiar with the stages of grief, as articulated by Kubler-Ross and Kessler:

  • denying the ways we are different in pursuit of being healthy and normal;
  • feeling angry because we are different, and because big things like having children and a life without the fear of heart and kidney issues may have been denied us;
  • bargaining our way out of difference and fear through silence and distance;
  • for some of us, becoming deeply depressed from the weight of it all; and
  • for many of us, growing to accept life with Turner Syndrome and living full, satisfying lives.

Finding Meaning

Kessler has recently written about a sixth stage of grief: finding meaning (Finding Meaning: The Sixth Stage of Grief. 2019). These times call for us to find meaning, and I think we are ready. This stage asks us to:

  • use this moment to identify, feed, and call upon our sources of love and strength;
  • be gentle with ourselves and others, more gentle than we ever have been;
  • see opportunity in crisis and let that vision inspire a better world; 
  • be abundant, generous, and kind; and
  • pay attention.

A Few Things To Do To Find Meaning

Given how complex finding meaning can be, I hesitated to provide a specific list of things for girls and women with Turner Syndrome to do to cope with grief in the midst of all that is happening. Honestly, right now, getting out of bed and taking a shower feel like accomplishments. That being said, understand that you can take what you find useful and leave the rest. I have been reading a great deal (which I have found to be a healthy alternative to eating brownies and watching too much news).

Advice from the Professionals

Doctors and psychologists consistently suggest a few things:

  • Make connections: call, video chat, write letters, send email and texts. Then, when it is safe to do so, connect in person. We are in this together!
  • Establish a routine that has self-care (moving consistently, eating well, drinking water, and getting enough sleep) front and center.
  • Create something: work on a project you never seem to have time to finish, set a new goal. Find a way to fire the neurons in your brain. These might be things that have been items on a to-do list that have never gotten crossed off.

The Road Ahead

This is a new day. Take this opportunity to find meaning. As writer Glennon Doyle often says, “We can do hard things.” And, no doubt the road ahead will be hard. Living with Turner Syndrome makes us good at persevering through grief. This is the time to be the miracle we are.

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