By: Jenna Koors, LCSW-S
“I’m pretty sure you have Lupus”, said my doctor during my second visit to rheumatology in 3 months.
I was shocked. Dismayed. Sitting in the clinic office, staring at white walls that smelled of fresh bleach, my world was turned upside down with one very ambiguous statement.
For years, I had struggled with painful joints, unexplained inflammation markers, and chronic pains. In the precipitating six months of my appointment, I had so many debilitating symptoms ranging from feeling like my body had been dipped in burning acid with ice cubes being run over my skin, to widespread pain where I felt as if my eyelids were being stabbed with needles; a solid diagnosis was seemed inevitable.
“You likely tested positive for it in 2015”, he continued nonchalantly. “Oh, and by the way, you also probably have Fibromyalgia as well, since you are ADHD.”
Another bomb dropped. “I don’t understand. How can we find out for sure?” I finally managed to ask.
“Well, we don’t really. I just make my best clinical judgment. There is no one way to know if you have Lupus, or if it is another connective tissue disease for that matter. Many times when someone has connective tissue disease, one flare may look like Lupus. The next time it may look like Rheumatoid Arthritis. Then it can look like Lupus again later in life. The medical field doesn’t have a definitive answer, but it’s becoming more believed that all the connective tissue disorders are the same underlying disease, it just presents differently from flare to flare and person to person.”
I bet it’s about here in this blog that you’re wondering what in the world rheumatological disease has to do with neurological variations. But bear with me and I’ll get to the connection soon!
Anyway, as do many people who are diagnosed with a medical disability, I spent the following months in and out of doctors, gave so much blood it’s a miracle I have any left and cried myself to sleep nearly every night. The most disturbing aspect of the whole situation was that I had to make peace with the fact that I likely have a potentially deadly disease that may or may not show up on paper. Not to mention, be ambiguous and never present in one way!
During this same time of medical incapacitation, I was also awakening to the fact that I am Autistic and that my children are Autistic as well. I’ve known for many years that I am ADHD and Dyscalculic after two previous neuropsychiatric evaluations, but somehow Autism was not on my radar until I began to learn more about it inadvertently through my children and clients. I know there was more to the story but did not have the term for it. Therefore, many walks those days consisted of attempting to process and come to peace with my ambiguous diagnoses, both medically and neurologically.
About 6 months after my medical diagnoses, I was out on my daily 2-mile walk around the neighborhood, listening to music, and processing my grief. I’m not sure if it was the bilateral stimulation, or a desperate attempt to think of anything else, but BOOM in an instant I found myself forming a hypothesis. If something as immensely studied as connective tissue disease has very little medical origin understanding, the same may also be true for other fields of science, including neuropsychology.
Of course, like I do when I have an idea or an intense interest, hyper-focused, nay fixated, on researching information regarding the ambiguity of neuro-variations. When I finally emerged from my rabbit hole about 9 hours and 32 minutes later, I came to understand that developmental and neurological diagnoses are indeed as ambiguous as connective tissue disease! Here’s the connection: just like lupus and rheumatoid arthritis may be different presentations of the same thing, neuropsychological diagnoses may also be different presentations of the same thing! For arguably the first time in my life, my neuro-identity shifted into place! Not only are neuro-variations like Autism and ADHD nearly the same genetic mutations with nearly identical brain scans, but autoimmune and chronic pain and fatigue syndromes like fibromyalgia, irritable bowel syndrome, and migraine are directly correlated as well! Science, of course, is still exploring hypotheses and theories and this will need to be explored in a later post.
Anywho! “Great!”, I thought, “Other people get one neurological difference, and I ended up with the whole kit and kaboodle”! I rolled my eyes and laughed so hard; it kept me from crying. Fast forward several years of learning, growing, and coming to terms with my anatomical variations, I realized that the terms and concepts behind “neurodiversity” and “neurodivergence” don’t quite accurately describe me, nor did I fit in with my unique perspective. No matter how hard I tried to fit into the movement, I just did not quite belong. No surprise, as “did not quite belong” could be my motto. Similar to how I don’t fit neatly into Lupus, Autism, or ADHD boxes. Furthermore, I have encountered the same feelings from my children, spouse, and clients.
I truly believe that each one of us has unique experiences, perspectives, behaviors, strengths, and difficulties that make us similar, yet so different from one another. All of us need a varying degree of support, whether medically, socially, and/ or psychologically. For many people, the Neurodiversity movement has provided refuge and positive identity, and self-advocacy opportunities that had not previously existed. But like so many things in our world, points of view and perspectives have become polarized, divisive, and judgmental; yes, even hostile at times! Sadly, in an attempt to increase diverse voices, we have inadvertently silenced each other. Furthermore, if we don’t act or behave a certain way, we are ridiculed and isolated. I believe this is not the true intention of the movement, and it makes me sad to see so much exclusion in a movement created specifically for inclusion.
Therefore, henceforward, I choose to identify as “multivergent”. Yes, this is indeed a mash-up of the phrase “multiply divergent” mixed with a very close reference to the MCU’s “multiverse” (I had to, I am a nerd after all! I’ll explain this some other time though). I envision encompassing a neuro-identity where those of us who are gifted with varying degrees of neuropsychological differences like but not limited to, Autism, ADHD, Dyslexia, IQ variations, Dyscalculia, Psychosis, Tourette’s, and so on have a community that is both kind and accepting, as well as informational and non-biased! Where people can learn about and explore multivergent approved services for each person’s individual needs and desires; where ALL multivergent voices are heard and valued; where one neuro-identity does not take precedence over others; where neuro-identity intersectionality is acknowledged and validated; where multivergents, caregivers, and allies feel safe to ask questions; where uniqueness is valued as much as community and solidarity; and where all aspects of self-identity are considered.
I have many parts and I am all of my parts. I cannot choose which one is more prevalent. I am a high IQer, Autistic, ADHD, Dyscalculic, and likely one of the “lexics”. I have sensory processing differences. I have the common medical diseases that come with neuropsychological differences including lupus, fibromyalgia, IBS, migraine syndrome, and Reynaud's Syndrome. I am a white middle-class female with a master’s degree who lives in an inner city. I am heterosexual and identify as she/her. I am a mother, a mental health therapist, a significant other, a sister, an aunt, and a friend. I love any and all things science fiction and old English literature. I’m a sucker for sappy romance stories. I am a dog AND a cat person (GASP!). I am a dreamer, lover, fighter, and kick-ass Lord of the Rings fanatic! I am a neuro-variant as I am outside the norm. I am me. I am Jenna. And I am multivergent!
END NOTE: Please share your neuro-identities! All experiences are different, and I love learning about the beautiful minds that make up our world. I would love to hear about your experiences with multivergence!
Terms:
Multivergent
Neuro-variant
Neuro-variations
Neuro-identities
About the Author: Jenna Koors is a licensed clinical social worker, mental health therapist, trainer, and clinical supervisor. Jenna is passionate about amplifying multivergent voices, a term she coined in an attempt to promote the inclusion of those with varying neuro-identities, while playfully breaking down stereotypes and misconceptions for the general populationJenna is the author of the children's book, "Meet the Neuro-Mutts."
Born and raised outside of Cincinnati, Ohio, in true Neuro-Mutt fashion, Jenna impulsively moved to New Mexico over 12 years ago and has been there ever since. Jenna has a plethora of special interests ranging from Lord of the Rings to seasonal decorating. In her spare time, Jenna loves introverting with her partner and her two wonderfully multivergent children, cuddling her cats and dogs, reading, rearranging rooms, and building furniture.