Where’s Whoopsie #4: I’m Aware that I’m Rarely Aware

Huh. Dysautonomia, ADHD, and mental health share an awareness month! (Mental Health Awareness Week this year was October 1-7. Oops. I guess I missed that one!)

It’s a pity that migraines get June for their awareness month. I was this close to only having to remember one month on this blog. That would have been incredibly handy for a girl with ADHD. Now, I know that May is Mental Health Awareness Month, and June is PTSD Awareness Month, but couldn’t I really just stick with the week, not the months? It’s hard to be aware with a disorder in which lack of awareness is a core diagnostic feature.

The ADHD ribbon color is orange. Or, at least so most of the posts on WordPress and Facebook tell me. When I went to confirm this, though, I learned that some of the ADHD non-profits I am following seem to think it is orange, and some seem to think it is purple. (I’d personally vote for purple, but nobody asked me!) Okay, I can buy that. Those of us with ADHD aren’t always known for our internal consistency. Changing our mind on our awareness color seems about par for the analysis-paralysis course.

Except, it isn’t just ADHD that has an awareness identity crisis. The dysautonomia ribbon color is turquoise. Apparently, a lot of sites list just blue – or even red! – as the dysautonomia color? Okay? Dysautonomia is a rare disease, so it warrants zebra print. However, you might also have to have Ehlers-Danlos alongside it to really claim the zebra print. (Dysautonomia International also now says that dysautonomia isn’t actually rare anyway, just “rarely diagnosed.”)

What about chronic fatigue? Some doctors diagnose both ME/CFS and dysautonomia as separate disorders. Others (like mine currently) say they overlap enough in symptoms you should only receive the ME/CFS diagnosis if you don’t have the autonomic symptoms. If you do, dysautonomia. ME/CFS’s color is blue too? Is that why dysautonomia used to be just generic blue? What about fibro, which tends to come along for the ride with either dysautonomia or ME/CFS? Oh, right: the purple that ADHD used to be!

PTSD is teal. Or, it’s teal unless it is yellow-and-red-with-black-stars, which I gather is unique to veterans with PTSD? Thus, it doesn’t apply to my PTSD? But it is part of mental health awareness, which is green? Or I could, if I chose, identify with the specific type(s) of victimization that characterize trauma. I’d have multiple choices: emotional abuse awareness is white (men working to end violence against women can also proudly wear white); child abuse awareness is blue; sexual trauma is teal like PTSD. I’m sure there are more, and I won’t be stating exactly which menu options apply.

Migraines are purple, too. Or, at least they have been since 2012. Before that, they were some form of burgundy or red, because that fit with headache awareness, while still distinguishing them as not “just” a headache. (Chronic vestibular migraines are red and purple!)

At least IBS is periwinkle, and apparently always has been. Food allergies, though, are teal (like PTSD) or red. Regular allergies are grey.

If you happen to be an adult with disabilities, you can also use burgundy. If you are a child, though, silver is preferred. If you happen to be a caregiver, you deserve some love, too. Claim plum if you are caring for someone with cancer, or maybe just someone in general. I’m unclear how specific that color is in its categorization. If you would like human rights as a caregiver – and I sure would, given those rights have been previously trampled upon by institutional abuse – claim orange and navy blue.

Are you confused yet? I am. I love the idea of awareness months, but I feel like I want to give the advice that my boss so often gives to me. Be consistent, brief, clear and on message. I have so many things I need to be aware of that my poor ADHD working memory can’t keep up. (I don’t think there is a “multiple diagnosis” awareness ribbon, but light blue would cover all chronic pain. You could also adopt invisible illness in general, which at least is conceptually consistent with white.)

The featured image for this week’s Where’s Whoopsie is a collage of all the ribbon colors – to my knowledge – with which I or someone in my immediate family can claim personal affiliation. I think I’ve explained at least one of the meanings of all the colors. If I missed one, it is a tossup among whether I just forgot to mention it, feel I shouldn’t share someone else’s story without asking them, or don’t want to go into that much personal detail about trauma. It’s possible that all the above are true and I’ve explained all the colors. Did I mention colors overlap a lot between causes? The other two entries highlight turquoise, teal and orange between them.

There’s obviously a lot to be aware of, and I suspect most of my readers could claim one or more of these colors for themselves. Since I clearly have many causes for which I could raise awareness, I won’t suggest any one preferentially. I will suggest in general, however, that if you have an opportunity to volunteer or donate for a cause this month, please consider doing so to organizations that provide services for chronic mental or physical illnesses to those of the most modest means, those unable to directly self-advocate and/or those with mental health issues that may be the most heavily stigmatized within the mental health community.

I know that we are making some strides – though not enough – in talking about depression and anxiety. Mental health care is deeply segregated along dollar and diagnosis lines. You can still be fired for having a reaction to a new medication for bipolar. Those little check boxes for self-disclosing a disability can be used as a litmus test, but if you don’t disclose you may forfeit your rights to ADA protections, especially for mental illness. It is still legal to limit the term of covered hospital inpatient services to individuals in mental health crisis, though this isn’t done for physical illness. When hospitals deny beds, patients typically end up with law enforcement or on the streets, at best, and deceased at worse.

I know it is still legal to discriminate against the severely disabled in heart transplants, because apparently their lives are worth less than others to Americans.

I don’t know that low-income individuals or the most acutely developmentally disabled have their own ribbon colors, or whether it would add to awareness of their challenges if they did. However, I hope I’ve raised at least some awareness for the compounding effects of those challenges on top of all the diagnoses that do have ribbons listed somewhere in this post!

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Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.

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