Support Natalie getting needed hEDS Medical Support

My name is Natalie Deryn Johnson, and I was diagnosed in January of 2023 with Type 3 EDS, also known as Hypermobile Ehlers–Danlos syndromes or Type 3 EDS. I am asking for support to increase my quality of life and tend to the financial impact this has had on my career. Support will help me receive necessary care and create manageability to continue with less pain and enter a phase of more stability.

I am a movement artist, photographer, and embodied facilitator that will be managing life with hEDS.This moment of self advocacy is really important for me and those close to me.

This diagnosis has been a blessing and an existential curse of sorts. I have been dealing with the impact of this condition for over a decade. The diagnosis has helped me have more legibility and humility regarding my needs at this moment in time. This is an invisible injury to an extent and I have masked my pain so long that it created a lot of invisibility in my life amidst my attempts to keep up with everything.

Living with this condition has created a lot of instability in my careers as someone that uses their physical body, and it has also led to many waves of loss of faith and isolation; both in terms of difficulty to travel, as well as loneliness because oftentimes, people do not realize how much pain I am managing to maintain connection to my profession, projects, and obligations.

It feels important to recognize that because I have been carrying this so long, I live life and relate with others through a lens of physical empathy that really strengthens my collaborations, creative endeavors, and community building. I add this to instill in us an appreciation for leadership that goes beyond our concepts of able or strong and instead consider the voices and insights that come from our community members with divergent perspectives and capacities.

Inspiration, aside . . . I want to acknowledge that sharing this with the world means I am losing my privacy — but help and shifts in visibility only come when people are willing to share. In daring to share, I also hope that I might also contribute to a growth in awareness about EDS and encourage others to ask for the help they need.

What is EDS / hEDS?

There is more written all the time about this condition. Here are two links to explore if you desire to understand this condition.

National Library of Medicine

Ehlers Danlos Society

For context, the pandemic really exacerbated the symptoms of this condition. This made it more obvious to seek medical diagnosis. I have made solo shows about my life as a patient and dancer to create a culture of compassion and understanding. When I am ready, I know I will come forward more publicly to discuss the vivid and shocking experiences in my medical journey since performing Patient History in 2017. I know I am not the only one facing the medical complex or the bewilderment of life in a body that feels like betrayal.

For fun, I’d like to bow to the archetype of the wounded healer and say that it is ok for healers to need help. My life experience has helped me birth Mystic Dare, the home to all of my embodied practices and cultivated wisdom from years in my craft. I thought my life would be very different, performing in a more stereotypical way. Life has driven me here. I am now the performer and maker I am because of my trials and desires, which just so happens to be woven with the archetype of the wounded healer, mad woman, trickster, hermit, and so on.

Despite knowing body pain and grief so deeply, I create and gather in ways that instill a real sense of beauty that recognizes limitation and honors possibility. There is a beauty in acknowledgement. This gofundme is a part of that path for me and my recovering capacity to bring my work forward.

And if we want to be really cheeky . . . as the question/joke goes in healing circles:

“Who heals the healer?”

Well my friend, This is that moment.

Expanding my community of care:

By helping me, you are helping our community. We are a web and the generosity will not be lost. It will be gathered and unlock opportunity beyond me.

Important to Note:

The video for this campaign was recorded in March. The gap in time between recording and coming public is a testament of how difficult it is to ask for help or share one’s health publically. Normally doing so is a very stigmatized activity. I have lived with medical stigma so long and want to recognize the courage it requires to be visible in a society that belittles bodies.

What does your help do?

Funds from this campaign go out of network care and creating financial stability:

examples of out of pocket care:

hEDS Specialized Physical Therapy

Acupuncture

Medical Massage

Doctor Visits, copays and out of network specialists

Supplements

I want to share that when I began preparing for this campaign I was burnt out and tired in a way that the word tired felt so useless. It still does. I am still tired deeply and in a lot of physical pain. Some days I can override my felt sense of how much pain I am in and some days are like today, where I wake up and can’t bend over. I am growing towards loving my gifts and life again after being so defeated. I have been doing my best to stay engaged in community and in my profession at great cost.

Managing health in America as an artist has been difficult and taken me out of the center of my performing life. I am dedicated to taking care of my body and being real in this life time.

My Justice side wants to be very clear that those of us living with invisible illnesses cannot always function as society demands, and that needs to be okay.

I am doing my best to write this in a digestible way, invite you into this world and the help I need, and also honor my heart.

This is a moment in my life where I cannot afford to manage this in isolation because it is not being managed successfully or sustainably. My health impacts my capacity to serve, my career as a movement artist and photographer, and my relationships. I have no safety net to catch me the way that crowdfunding can catch me in this moment.

Lastly, I just want to say thank you! I am grateful to you for reading my story and any contributions made towards my shift in well being. It is not a small thing to help one another.

A small request as someone that lives with a complex life long condition to manage - I would prefer that messages of “healing” and “speedy recovery” not be shared with me at this time or maybe ever, as opening up my private life is less than ideal and I am doing my best to create space in my mind to hold both this new truth on top of my aspirations. Plus, for many people like me living with conditions like this - there is no “recovery” - it is more like shifting textures, trials, and epiphanies within a unique human body experience. I adore the body and will continue to do so. That being said, All my gratitude.

Love,

Natalie

Additional Thanks:

Thanks to Melissa Wu for helping with this gofundme, Jake Levin and Hannah Weinstein-Ammann for helping to open doors to medical insurance, Yvonne Cone + Rhys Tivey + Trinity Dawn Bobo for copywriting and emotional support. Zara Hanford for compassion and assistance. Linde Matthews for strength. Rhys Tivey for every dish he cleaned when I couldn’t bend over or pick up heavy objects (sometimes I still can’t). Love you.

Ways to support outside of Gofundme

Substack - poetsbooty

Mystic Dare sessions mysticdare

Follow and support my loved ones that have been behind the scenes: @wuwu828, @mindonzen, Yvonne Cone, @linde.matthews, @zara_moves, @rhys.tivey

*banner images from Theik / @PatBerrett / @effygrey_photography / @rhys.tivey

honoring my professions in dance + photography