Living With Autism, EDS, and MCAS - Brandy's Story
Tell me a bit about yourself:
My name is Brandy Haberer, and I’m a disability and autism activist, podcast host, and illustrator. I manage an Instagram account and Etsy Shop called @the.chronic.couple, where I educate and advocate for Autism, chronic conditions like Ehlers-Danlos Syndrome, and mental health through my writing and art.
What is the name of your condition?
My conditions are Autism, ADHD, Ehlers Danlos Syndrome and Mast Cell Activation Syndrome.
At what age were you diagnosed, and how did you handle getting the news?
It took me until the age of 37 to get an EDS and MCAS diagnosis, and I didn’t receive an ADHD and autism diagnosis until 38.
With every diagnosis I’ve ever received, I think that after the initial shock, it was a relief. Each of them felt like validation for all of the symptoms or things I had experienced in my life that were different or brushed off as exaggerations. My behavior now had a reason, and my pain now had a cause. For me receiving a diagnosis was a validating experience that helped my mental health tremendously.
Tell us a bit about your condition and how it has affected your life.
I don’t really feel like autism is an illness, but a neurotype or variance in neurology. I do, however, think that it is a disability because of how society affects my autistic traits. The world is not very accommodating for autistic people, and for that reason, being autistic is disabling. I also have Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder of the collagen or glue that provides strength and support to the body. There is a high number of autistic people affected by EDS. Mast Cell Activation Syndrome is a condition that can accompany EDS. MCAS is repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, and difficulty breathing. Without an official EDS diagnosis, treatments of my symptoms were brushed off and not taken seriously because EDS is an invisible illness. Without my autism diagnosis, I wasn’t able to receive the proper supports because I didn’t know what I actually needed.
How has living with your illness made you a stronger person?
I think my conditions have made me a stronger person because they forced me to take care of myself. There were areas where I had problems with boundaries and taking on too much from people. My conditions forced me to stop and take care of myself and put myself first. It shined a light on areas where my life needed work and my boundaries needed strength.
Did living with your condition inspire you to start a blog or a business?
My conditions most definitely inspired me to start sharing to normalize and raise awareness on social media, which then led to an Etsy store with the illustrations I created in my posts as stickers, magnets, and T-shirts. This came after people started asking me if they could print out my illustrations and frame them or put them on their fridge. So I decided to make that easier for them.
How will the Healthy Life Planner help you manage your illness in 2021?
The Healthy Life Planner it’s such a great idea because with chronic illnesses our symptoms fluctuate. A lot of us have food sensitivities and need to keep track of how we feel so that we know our triggers and what to avoid. It also seems extremely helpful for autistic people. Sometimes we forget the mundane tasks that come with being an adult. Having something to remind us, and being able to share our thoughts is incredibly helpful.
Do you have any words of advise for others going through the same thing as you?
My advice would be to put yourself first. If we take care of our mental health, physical health and environment to the best of our ability, then we are more capable of being our best self. We expend so much energy cognitively and physically just existing, that we need to remember that when comparing ourselves to other people. We are stronger than we even realize, and just because we are different doesn’t mean that we are less than.
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If you, or someone you know, would like to share your story, please email me at firstname.lastname@example.org