Not Really a Disability article

Not Really a Disability, but Sort of; Being a Highly Sensitive Person

by Cybele Elaine Werts

A few years back I went to a dazzling New Year's party. It was dazzling in part because I had arranged it, and I enjoy organizing and catering parties. Glittering lights adorned the snowy path and colorful appetizers lined a giant food table. There were black and purple balloons to match the black and purple partyware, and mad rushes of guests galore in their glittering party finest. I too was glittering, in part because when I'm on, I'm really on, and in part because I was wearing a full-length duster that twinkled with little stars.

If this all sounds like a big bowlful of fun, well, it probably was. The downside – for me anyhow – was that I spent nearly all of the next day recovering. Even though the event was probably only three hours, that kind of public contact just sucks the life right out of me.

It's natural to feel tired after a long day or a big event, but those of us who are "Highly Sensitive People" or HSP, get completely wiped out. This is a formal term that I’ll talk about more in a little bit. I don’t often tell anyone about being this way because they usually launch into a bunch of unsolicited advice. Sometimes they don’t even believe me, which is weird although kind of understandable because I’m such a cheerful and energetic person. They probably figure I’m be-bopping around in my sleep organizing kitchen drawers.

Where I’m Going with all This
My hope is to shed some light on this area that is not really a disability, but sort of. You see, with a little formal information and a few personal stories at hand, it's easier to explain things to a friend or maybe even to an employer. You may want to help them appreciate the personal cost of being a HSP, or even make a case that being highly sensitive is on the cusp of being a disability. Dealing with the situation in a proactive and direct way helps a lot. Humor can’t hurt either. First, I want to tell you about my own experience and how I deal with it, then I'll put it into the larger context of disabilities. It's a little hard to write about because it's so personal, and there’s also shame attached because I’ve tried to hide the limitations I’ve been living under. I am sharing my story anyway because I don’t want anyone else to feel ashamed, and I know that pride starts with me.

What It’s Been Like for Me
I've always been sensitive to lots of things such as being around lots of people, bright lights, or intense smells. My health deteriorates rapidly and markedly under stress, even under small stresses such as not getting enough sleep. I am geographically challenged and sometimes get lost even in my little hometown in Vermont. My sister calls me a "touch-me-not" because I'm not big on the huggy-kissy stuff. I get burned out being around people – even people I like – for more than few hours or so. And here’s the funny part: some people call me a misanthropist because I don’t actually like all that many people either. (don’t worry, I’m not a sociopath, that’s a different thing). I travel when my job requires it, but I end up spending all my time after work recovering in my hotel room. All in all, I'm just plain kind of delicate. You wouldn’t know it because I look robust but it’s the gosh darned truth.

I always thought that these characteristics were quirks until a good friend gave me a book by Dr. Elaine Aron called The Highly Sensitive Person: How to Thrive when the World Overwhelms you. All of a sudden I had a name for all this which was an incredible relief, not to mention knowing that there are lots of people like me, some 15% - 20% according to Dr. Aron. The book offers numerous ways to cope which were very helpful. Although generally speaking I don't like labels, in some cases they can be very freeing because now instead of it being “that weird quirk that Cybèle has,” I can explain my personality in the context of something that a rather large percentage of the population experiences. Now instead of stumbling around explaining it myself, I can let people with PhD's stumble around and explain it on my behalf.

What is a Highly Sensitive Person?
In her book, Dr. Aron explains it quite well, saying that, "Highly Sensitive People have an uncommonly sensitive nervous system. It means you are aware of subtleties in your surroundings, a great advantage in many situations. It also means you are more easily overwhelmed when you have been out in a highly stimulating environment for too long, bombarded by sights and sounds until you are exhausted." Another nice description comes from the Highly Sensitive People website for Sensitive, Intuitive, Creative and Spiritual Persons, which suggests that you may be highly sensitive if you are: "aware that other people's moods affect you, conscientious and/or meticulous, uncomfortable around loud noise or bright lights, needing frequent alone time to recover from overwhelm or over-stimulation, or rattled when too much is being asked of you."

Of course, as with all things, there are a wide variety of attributes that may or may not affect each person. For example, shyness is a common attribute of HSPs. In contrast I love public speaking so much I fantasize about becoming a motivational speaker. Of course then I’d have to travel, so that’s out. Consider that according to one national survey most people would rather be in the casket than giving the eulogy. Shyness is clearly not an across-the-board indicator of HSP.

How to Share Your Feelings with Da' Boss
Thanks to all the research I feel like I have a pretty good handle on coping with being a HSP, but I have faced a continuing challenge in sharing it with friends and colleagues. Because of my concern about this, I attended a workshop led by Yvona Fast, author of the book Employment for Individuals with Asperger Syndrome or Non-verbal Learning Disability: Stories and Strategies on the Subject of Invisible Disabilities. I was particularly interested in the subject of invisible disabilities because I felt that in a way I had been living with one, albeit one that doesn't officially qualify as a disability. It's a "Disability-Lite" I guess, and as such I can't ask for accommodation under the Americans with Disabilities Act. Luckily for me I happen to work at a federally-funded program that provides state level technical assistance in the area of special education, kind of "in the right place" you might say. Even so, it can be embarrassing and awkward to talk about your personal life with the person in charge, and Yvona's suggestions were helpful in crossing that divide. We worked it out so that my sister information specialist can travel to out-of-state events, and we take breaks during staff meetings so that I don’t turn into a zombie by meeting's end.

Sadly, I haven’t always had it this easy. At my last job I routinely had to travel to Montreal. By the time I navigated the French street signs back home (no wonder I got lost!) I’d have to take a few sick days to recover. This was no fun for me and put me behind at work too. The hard part was that I couldn’t just tell my boss in a general sort of way, I had to actually tell him what it meant specifically when I got burned out, as in "if you make me keep working I’ll throw up, faint, or cry, maybe all three." It’s difficult to be so direct and concrete with anyone, much less your supervisor, but sometimes it’s the only way to get them to understand that you aren’t just trying to leave work early so you can go to the matinee. Even with all this and a fistful of articles to add credibility, he just plain didn’t get it. We may have both been Type A's, but he thrived on the stimulation of interacting with lots of people, places, and events. On the other hand, eight hours of schmoozing at a conference will steamroll right over me, leaving me smushed on the pavement like Wile. E. Coyote after the Roadrunner beep-beeped on by.

Eventually, I realized that I could not make him understand and that really, he didn’t have to understand. What he did have to do was accept that I am different and that I will probably always have to take sick days after those wild little jaunts to La Canada. As Yvona Fast said rather succinctly in her workshop, "It won’t go away. A disability can be accommodated and skills can improve with practice, but it is neither outgrown nor cured." Not to mention that we all really do have different gifts. My former boss may have been able to out glad-hand me, but I can make scalloped orange baskets filled with scallion palm trees.

How to Tell Pushy Advice Givers to Butt Out
It isn’t very easy with friends either, something which tends to put a kibosh on being invited out. I sometimes explain the HSP thing to them so that they won't think I'm being rude or unkind when I leave a party early, or even don't show up. In response to my being so honest, I've received all kinds of unsolicited advice, the most common that I drug myself with something along the lines of Valium to fix the problem. That people feel that drugs should be the first line of defense is a problem in itself. But even more importantly, I hate that they need to fix me, that they cannot accept my difference simply as a difference, not as some kind of inferior trait. In Norman Kunc and Emma Van der Klift’s video A Credo for Support, the speaker says, "Do not see my disability as the problem. Recognize that my disability is an attribute. Do not see my disability as a deficit. It is you who see me as deviant and helpless. Do not try to fix me because I am not broken." There is no doubt in my mind that this is something that people with far more serious disabilities than mine feel all the time.

The Bigger Picture and "Real" Disabilities
Now, let’s look at all this from a broader view, the legal view, because you can probably tell by now that I work in the area of special education, so I have a bit of a feel for the whole thing. If you have a formal disability, a "real" disability, you are protected from discrimination in the workplace by the Americans with Disabilities Act. That means that your employer must provide you with "reasonable accommodations" to do your job, providing you have documented your disability. It can be challenging to self-advocate under those conditions, but at least you have the law on your side. Self-advocating means that you have to stick up for yourself when you need something special like a wider entrance to your office to accommodate a wheelchair, or a phone with larger number buttons so that you can see them easier. Sometimes it also means less concrete things like flex-time or job sharing. It gets a little more difficult to explain things to an employer if you have an invisible disability like a learning disability, which means you might need a little more time to do a job or a slightly modified procedure. When a disability is "invisible," that means that there's nothing like a wheelchair or a white cane that shows on the outside.

Now imagine that you have something really fuzzy and really invisible like being "highly sensitive," which not only is NOT an official disability, but most people haven't even heard of it. Remember how ten years ago no one had heard of Chronic Fatigue Syndrome? Back then they advised sufferers to eat more broccoli and a few vitamin pills and they'd be fine. Well it's like that now for HSPs. Most people think that we are just being lazy, self indulgent, or trying to get out of staff meetings. I'm not lazy or self indulgent and the reason I told you my story is so that you will know at least one highly sensitive person who is hard working and dedicated. I may however, still try to get out of staff meetings.

How I Manage It All
Here's the good news. I’ve read the recommendations on how to cope with being a HSP and I follow them judiciously. I have a job as an information specialist, which is something like a high-tech librarian, which is a perfect match for my skills and disposition. I live alone in a quiet area and focus on a number of hobbies like writing and photography that are more inner than outer directed. I stay away from parties and large events, and when I am shanghaied into attending, I leave within a few hours. I keep my people activities pretty short, and rarely travel further than New Hampshire. I avoid touchy-feely situations like hot tubs and make crabby faces at people who look like they're going to initiate a hugfest. I take the same route to work every day, keep my cell phone charged up, and joke about not being able to find my way out of a paper bag, a joke I stole wholesale from Yvona. I take care of my health by working out, sleeping plenty, and eating Ring Dings on a regular schedule. Most importantly, I have good boundaries around my personal space and time, and as a result, I feel pretty darn good most of the time.

I don't explain much of this to anyone anymore; I just act very polite and say that "I have another commitment" and that catchy phrase seems to keep the nosy parkers at bay. My real commitment is to my own peace of mind, which means I can probably be found curled up and reading a good mystery novel with a few kitties purring nearby. Does it bother me having to do all this? Only when I over-commit myself, but then I guess we all do that sometimes. I'll admit that it's been a challenge developing intimate relationships, but then I’m not sure anyone else has it any easier. Intimacy is tough on everyone. Perhaps instead I'll just get involved with another highly sensitive person.

Why I Like being a HSP, So There!
Here's the even better news. My awareness and sensitivity to my surroundings give me a finely tuned sense of creative expression, and make me an exceptional writer (although not a modest one). They also allow me the space to develop the remarkable inner relationship I have with myself. Dr. Aron apparently agrees with me, as she says in her book that, "Sensitivity is anything but a flaw. Many HSPs are often unusually creative and productive workers, attentive and thoughtful partners, and intellectually gifted individuals." Some of the other wonderful attributes that being a HSP include having an unusually sensual and rich inner life, strong intuition, an enjoyment of our own company, total comfort in being alone, and a great capacity for inner searching. The good news for my manager is that we are also excellent project-oriented employees because we are responsible and thorough in our work. These are the things I would like my friends and colleagues to know and remember about me the next time they want to fix me.

Now that I know I'm a HSP I don't actually attend too many New Year's parties anymore, and even when I do cater events, I tend to slip out before the arrival of the herd. Still, I can enjoy the glittering lights and beauty of the food piled high because after all, it's the HSP in me that gives me that extra appreciation of the little things. The best part is that now I can wake up the next day as perky as ever and be-bop out to the kitchen to re-organize the drawers before breakfast.

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