For those of you that are new to IWWB, Pass the Mic is a way to give other spoonie warriors a platform to share their chronic illness journeys with each other. Sharing helps us feel a little less alone in our battles. Wanna be featured? All you have to do click here.
This month’s PTM warrior is Mia. She has quite a story for us. Let’s see how her chronic illness journey with Ehlers-Danlos Syndrome (EDS) has been.
So what’s your name and where are you from?
Mia, M from Maryland
How old were you when you were diagnosed with Ehlers-Danlos Syndrome? What events led up to the diagnosis?
EDS is genetic so I’ve had it and symptoms (joint pain, dislocations, poor healing, etc) my whole life we just didn’t know what it was. I wasn’t diagnosed with EDS officially until I was 23.
When I was around 16 I saw a doctor that suggested I had “some condition doctors had recently started studying that made teens super bendy” but he didn’t know enough about it other than I was the first case he had ever seen.
I had been diagnosed with POTS and a few other types of dysautonomia that same year so I had already reached out to online support groups for advice for that. A few people in the group kept suggesting I get checked for EDS since my symptoms and medical history lined up with theirs.
I kept asking doctors and physical therpaists for years but it wasn’t until I was living in California going to school that I finally found someone that said they’d help get me seen at Stanford. They had a team actively researching the condition there.
Stanford ruled out the life-threatening types of Ehlers-Danlos Syndrome but since they still weren’t sure what the genetic marker for EDS Hypermobility type was they could only assume I have it based on medical history.
Now the more researchers learn about EDS the more clear it is that I have it.
What has your treatment plan been? Which medications have you had the most success with?
The only thing offered really for Ehlers-Danlos Syndrome is pain meds and scripts for physical/occupational therapy. Over the years I’ve tried just about every pain med that I could safely try, even a few that weren’t safe.
The only things to consistently work for me have been working out daily and trying my best to honor when my body needs rest. Bracing, multiple mobility aids, and Epsom salt lotion are also a godsend.
It took years of trial and error to figure out what helped and when to use what but thankfully I’ve got a handle on most things now.
Are you in remission? If so how long?
Remission isn’t really a thing with EDS. It’s considered to be progressive since the damage it causes can’t be undone. But I’ve been fairly stable the last 3 years compared to what it was like before I knew I had it.
Besides the symptoms, what’s the most difficult part of having a chronic illness for you?
Dealing with people not understanding what I go through and doctors not believing I really have EDS or that it causes any difficulties because they’re misinformed about what it is/how it presents.
What’s the biggest impact Ehlers-Danlos Syndrome has had on your life? Have you had to make any changes to your everyday life?
The impact it’s had on my finances and stability is honestly the biggest blow. My health forced 3 career changes for me all before I turned 21.
Because of how unreliable my health became, working in the entertainment industry became a big challenge. I went from being a performer to working behind the scenes, and now only do solo postproduction work when I can rather than to pay the bills.
By 23 it was determined I’d never be able to safely live alone. It was a lot to take in so close together.
My everyday life changes so often, be it from health or work commitments that the only consistent everyday change I maintained after diagnosis is taking 5-10 minutes every day to do a body scan. I stop and focus on what my body is saying it needs that day.
Do I need to brace something? How much ice will today’s actives possibly need? Can I even do the things I planned today? Can I push through to meet work obligations or do I need to accept the lost wages for the day?
In short, it’s forced me to slow down tremendously.
Who or what has helped you the most in coping with your diagnosis?
I lucked out and had a disabled parent growing up to show me the ropes. If it weren’t for my father showing me how to quickly adapt to rapidly changing new normals and how to problem solve access issues on the spot I’m not sure I would have come to terms with my health as quickly as I did.
That combined with being “the wrong type” of ballet dancer in a semi-professional ballet company for 22 years I was so used to feeling out of place even when told I wasn’t and having a “the show must go on” mentality that I’m generally unphased by most things life throws at me.
Besides physically what other effects has Ehlers-Danlos Syndrome had on you (mentally, emotionally, spiritually, financially, etc)? How have you worked through these issues?
It wrecked me emotionally for a few years in college. When I hit the point where it became unsafe for me to be alone or even really walk around the city where I lived because I would dislocate so easily, I would breakdown at least twice a week.
It also meant I struggled to keep up with classmates and coworkers so I often felt like I was being left behind. I nearly became homeless a few times then as well because of it.
Thankfully my parents were always willing to help keep me going but it was a hard pill to swallow having to move back home when friends were able to move abroad or buy their first houses. It was hard finally having a name for what was wrong with me but still struggling to figure out how to thrive with it rather than just barely survive it.
I went to therapy off and on for probably about 16 years total. It took me a while to find a therapist that I truly clicked with to work through some internalized ableism and anger I felt towards myself.
It took using the tools I learned from them and really focusing on my spiritual practices (mostly daily meditation) to get to the level of acceptance and peace I have now.
What goals have you been able to accomplish in spite of your EDS? What’s next for you?
Honestly, Ehler-Danlos Syndrome hasn’t ever really stopped me from meeting my goals in life. It’s just changed how I get there.
It has certainly delayed things by years. But I still have hope I can accomplish all I set out to do.
I am currently working on starting an access-focused performing and visual arts community for those with chronic illnesses and disabilities to perform and create as their full selves in the DMV area.
I planned to launch this month with in-person classes and workshops. Unfortunately, the pandemic has slowed that down a bit. But I am working on finding a way to get that up and running by the end of summer.
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed ?
Putting a name to what harms you merely tells you what you’re fighting against. The name hopefully is one that’s been said before and has info laying out how to fight/live with what you’re going through.
And if not, I hope it helps you find a community to lean on. No one should ever have to face hard things alone. It’s always okay to ask for help even when you don’t think anyone will.
Any other comments or words of wisdom you want to share?
I try to remind folks that while your diagnosis is a part of you, it’s not all of you. Try not to lose sight of that for too long. It took me years to fully accept that as my truth. I gotta say, it’s been an absolute blessing lifting that weight off my chest.
If you’d like to connect more with Mia you can find her on IG : Ballet3m
Mia and I are going live Wednesday 5/20 at 7pm EST to chop it up and dig a little deeper into her story. Make sure you tune in to my Youtube Channel to catch it.
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