Ehlers-Danlos Awareness Month 2021
A month-long story to help raise awareness for those with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.
It is May, and therefore EDS Awareness month again. I’m going to do my best to participate in the social media challenge because there is a lot I haven’t been sharing in my writing, or in general and because my views on the impacts of chronic illness have grown in the past two-and-half years.
{ 1 } This Is Me
I rarely share photos of myself anymore, and when I do, they have edited to only let you see the version I’m willing to share.
The real me always looks exhausted, has bloodshot eyes from allergies or being in pain, and progressive droopiness on my face. I don’t want you to see the real me because I don’t want pity or more exclusion, I want to adhere to the fantasy of being “fine,” but in reality, I haven’t been for a long time now. My health has been progressively declining and kicking my ass and seeing that in pictures can be depressing.
Of course, on this journey with me are my girls, Ali and Ema, and their older brother, who is officially an adult now. I’m respecting his privacy and will only mention him briefly during the course of the month, and will only be sharing one image from when he was about seven. Here is a picture of the girls in the summer of 2019.
{ 2 } Diagnosis (or journey so far!)
Our journey started at “Everyone’s Doing Fine.” — The lies we tell when we don’t have the energy for the truth, after our primary doctor diagnosed Ali with Ehlers-Danlos Syndrome, hypermobile type (hEDS) in August of 2018. Suddenly all of the pain and issues and I had suffered through made sense. Since then it has been a roller coaster of pain, sprains, allergic reactions, blocked intestines, mast cells, and more. You can read what I’ve previously shared below, (if you just want a quick rundown, skip to The Physical, Mental, and Emotional Toll of Six Weeks at Home.) There are more recent events not included in the stories below, but I will get to them this month.
{ 3 } Symptoms
Some of our symptoms have become so typical that they have begun to feel like an extension of ourselves, and while that may make it easier to cope, it isn’t necessarily a good thing. Here is a list (not all-encompassing because I am sure to forget something and some symptoms have eased up since we’ve at home this past year) of our current symptoms that we each (minus the oldest, who has symptoms, but remember I’m respecting his privacy) have. Some are chronic daily symptoms, some once a week, and some less often.
Ali: Chronic pain in her joints, especially her neck and lower back; headaches and migraines; mouth ulcers; stomach pain, and nausea; easy bruising and scarring; chronic hives and pressure urticaria (hives) caused by mast cells; chronic allergic rhinitis; muscle pain; fatigue; anxiety; and sleep issues.
Ema: Chronic hives, chronic pain in knees, ankles, wrists, and neck; red and hot inflammation at knees; random allergic reactions to previously okay substances; insomnia; fatigue; recurrent sore throat without infection.
Myself: Chronic pain at the neck, shoulders, wrists, hands, knees, back; ankles, and feet; damage to C7 facial nerve with bells palsy; muscle twitches in face, hands, legs, and feet; “Your neck is messed up!” — primary physician; GERD; heart palpations with shortness of breath; Raynaud's symptoms; pain in wrists from a cyst that is in the bone; recurrent swollen lymph nodes; constant ringing in ears; migraines with aura; and chronic fatigue.
{ 4 } A Day With EDS/HSD
Feel free to follow along with the Twitter thread below.
{ 5 } School/Teachers
I had intended to write a new piece for today, but I’m battling a pre-migraine aura and just generally feel wiped today. We’ve always been a homeschool family, with a brief six-month, part-time, stent with a local private school.
The best advice I can give to those who find themselves home educating while the child, parent, or both is dealing with chronic illness is this; teach your children how to think critically, research, and learn. Those skills, coupled with a passion for learning (interests-based learning) will be needed for the times when you just can’t learn in a traditional manner.
If you want to know more about our educational experiences. Feel free to browse the homeschool tab on the That Odd Mom main page.
{ 6 } Management Strategies
(I might come back to 7–9 later)
{ 10 } Mental Health
This month ended up being more of a mental and physical toll than I expected. I’m just going to keep adding to this story when I have the chance and the inspiration — continuing awareness for Ehlers-Danlos Syndrome all year long.
