VEDA occasionally shares a post from someone so miserable
they don't know if they can take it anymore.
These posts are heartbreaking, but I'm always so glad when they reach
out. And it's wonderful to have the
chance along with the rest of the community, to reach back to offer support and
encouragement. It also reminds me of why
repeating myself a bit, like going over the same groove in a vinyl record, is a
good thing. My therapies work for me in
layers, very gradual, thin layers and I'm beginning to think there's a
similarity to how people learn about invisible disorders. That talking about these disorders in bits
and pieces, and sharing experiences helps people to "get" it. Even so, sometimes I ask myself "What is it about this situation, MY
situation, that is so hard to get?"
People say things that truly surprise me, and I wonder if part of the
problem is that when someone looks good, it's really hard to believe that
something is really wrong.
Invisible disorders, to state the obvious, really are invisible. They are there, felt and experienced, but
cannot be seen. You would have to see me
in the routines of my daily life to see noticeable differences. Like that I'm not sitting and reading a book,
or magazine, or newspaper. Instead, I am
sitting with headphones on, listening to something. That I'm not driving myself anywhere, but
rather I am always the passenger. That I
take frequent breaks from my computer.
That I have to rest, with no stimulation at all, every day in the early
afternoon. Those are a few examples; my
life is manageable because I work at it all the time.
There are internal differences that no one can see, that
I can feel. Like the frequent ear
popping/crackling I get when my sense of balance is getting reorganized, or my
need to remember to breathe (my therapists talk about this a lot) so that my
body relaxes. The feeling when my brain
shuts down and I know I need a break because processing anything else feels
physically impossible. And when my body
is working hard, but it's not a time to shut down - like in vision therapy -
and I feel heat radiating out of me. There are so many things about balance, or
health for that matter, that people take for granted and don't give a second
thought to.
Yes, I look good or at least decent most of the
time. Unless I'm having a really bad
day, am utterly exhausted, and feeling sick, yes, I look what I guess you would
call normal. My eyes don't look funky,
bleary, whatever. If you look at me with
my reading glasses, unless you're surprised by the slight tint, I look totally
normal. I don't look like I'm about to
topple over. I'm not constantly grabbing
onto things. I'm not holding my head in
pain. I don't look green in the face.
Those are all things that people do when they are really sick, and thankfully
that's not where I'm at now. But I
wonder if that's what people expect me to look like. Basically, I wonder if people expect me to
look different.
I am constantly reminded of the issue of how easily
people can relate to whatever you're going through. Do people "get" what you're dealing
with? Or do people THINK they "get it," when in fact they don't. Looking at the response to my post "What
it all feels like to me" I was struck by how difficult people feel it is to
be understood. There's something about
how it feels to live with the challenges of these particular disorders that's
very hard to communicate. And that
difficulty to be understood adds a layer of difficulty to those living with the
invisible disorders that cause dizziness, disequilibrium, etc. I have a good friend who reads my blog who
has told me that it's still hard for her to understand what it's like for
me. Perhaps it's because people think
that dizziness comes, but then goes away and stays away. It's easy to understand when someone can't do
something because they're not able to use an arm or leg or hand. Maybe it's hard to imagine, or think about
what it's like, to feel dizzy or off balance doing really basic stuff.
I find myself thinking about what is or isn't normal,
standard or average. We hear the words
"normal," "average," and "standard" a lot, but I
don't know how much people think about what the words mean. There's a surprising number of definitions
that are given if you look up these words on Dictionary.com, so I asked myself
how I think of them, and how *I* use them.
Average to me means that there are a lot of people who are the same, but
there have to be people who are different as well. That's really important because otherwise
there would be no average. Normal to me
is something that also comes from being compared to what is not normal, or what
is abnormal. I think of a standard as a
basic rule if you will, something to hold up against other elements and say
"OK, this is a basic rule of thumb to go by."
I don't think of any of these terms as negative, though
the word average in particular often seems to have negative connotations now. But in medical terms, average to me simply
means there are a lot of others like a certain thing. Normal can also get a bit dangerous, but in
its' simplest term, it's a standard or rule of thumb for health. The trouble with normal is that there is often
a wide range of normal, or of abnormal, because we humans are all
individuals. However, all that being
said, I know there are some things that I can't do that if I could it would be
considered "normal," like the driving I mentioned. There's no question that sometimes I don't
feel normal, and I feel a whole range of emotions because of that. I also think looking "normal," the
fact that my disorders are invisible, is a very mixed bag. I don't have to deal with a variety of stuff
that people with visible disorders have to deal with, and I don't mean to
minimize any of that. I can, in theory,
blend in.
The problem comes when I have to share that I have
disorders. I think "disorders" is a better word than
problems because, right or wrong, "disorder" makes people think of
medical conditions. I can just picture
the gears turning in someone's head - "but you LOOK OK." And then phrases like "looks are
deceiving," and "don't judge a book by its' cover," counter
phrases like "seeing is believing", and "a picture is worth a
thousand words." Frankly, it can
all get pretty frustrating. I have an FB
friend who's been dealing with her troubles for many more years than me, and
recently commented that people just don't get it.
I said earlier in this piece that I was struck by the
response to my blog about how it feels, and truthfully it was hard to write
about how it feels, and maybe that's part of the answer. Explaining what sets me off, what it's like
when it's due to an invisible disorder that requires treatment of some kind is definitely
harder. But in the end, all of us with
invisible disorders keep plugging away, and I'll keep on telling my story, hopefully
speaking for some of the others out there with invisible disorders. And hopefully little by little, people will
be more understanding, and will start to "get" it.
