I've written that one of
the best ways to fight stigma is to do what you need to do, speak up for
yourself, and not make a big deal over it.
It's also important to realize that we ALL know at least one person with
an invisible disorder; we're all people,
whether we look the same or not. And
when you know what they're struggling with, it humanizes the problem. All of a sudden it's not this distant thing
that "they" deal with. It's
the Depression or Anxiety that someone struggles with behind the smile. It's the vision disorder no one can see, the
vestibular disorder that the person with whom you're speaking is coping
with.
Stigma is about how people
are treated, but it's also about people with problems feeling uncomfortable
sharing something, doing something, saying something because of being afraid of
how they'll be perceived. How people
will react to them. A number of things
have influenced how I feel about stigmatization. Raising my daughters to be kind, tolerant,
compassionate people is important. But
I've also had some personal experiences that made an impression on me. Obviously my own illness is one of them, but
a few earlier experiences also had an impact on me that really stick out in my
mind: one as a teen, one in my mid-twenties, and another a few years later.
When I was a teen - about
15 or 16 - at Camp Chi one summer, one of the girls (I'll call her Sarah) in my
group had some kind of hidden disability.
I remember Sarah had trouble processing things, dealing with social
interactions. And she was overweight, and
sadly this was well before adults did anything about bullying. Sarah became very withdrawn, and slept a
lot. At the time, I had no idea that
excessive sleep was a sign of depression.
To her credit, the camp counselor for my group spoke up after about a
week, and encouraged us to interact with Sarah more. I wasn't a particularly socially skilled teen
myself, and definitely not one of the "popular" kids, so I think it
was a good fit for me to reach out. I
also felt bad that Sarah felt bad, and we became friends. She was incredibly sweet, and really
flourished with attention.
About 10 years later, in
the late 1980's, I was working at a drop-in senior center where we provided
programs and various services for the elderly.
We got a call from a mom who wanted her young adult disabled daughter to
have a volunteer opportunity. Her
daughter (I'll call her Kathy) was living at Ronald McDonald house. Her mother wasn't completely honest about the
severity of her daughter Kathy's disabilities (she had cerebral palsy), which
became apparent once we met Kathy.
However, we all really took to her - she had a wonderful, friendly
attitude and tried really hard. We
decided to let Kathy stay and managed to find things for her to do. She helped out in the kitchen, and everyone
loved her. It was such a pleasure to see
not just how others interacted with Kathy, but how happy she was to be with us.
A few years later, no
longer working at the senior center, I met my husband-to-be Ron. After a couple months, he told me he had what
was then called Manic Depression (MD). Ron
was the first person whom I knew so personally who had an invisible
disorder. He told me later that his
mother was a bit concerned, and wanted him to wait to tell me, but he had
thought the timing was right. I knew
nothing about MD (now called Bipolar Disorder), and in the Fall of 1990 you
didn't go onto your computer and Google "Manic Depression." Nor did
you look it up on Wikipedia. So over
time, in conversation with Ron, I learned about his illness. About medication and the importance of
sleep. I learned a great deal more when
he had to switch meds eight years ago.
But in the end, I always felt that I had to see the person Ron was and
is, not his illness. That's what had
happened as a teen at camp, and with Kathy at the senior center; I had the
opportunity to interact with them as individuals with personalities, not just
people with problems.
Now I jump to September of
2011 when I got sick. I am now the one
living with an invisible disorder.
Looking back on the early years of my marriage, I've talked in the more recent
past with my daughters, about what goes through your mind when you meet someone
you are thinking of spending your life with, who has an invisible
disorder. The thing is, you never know for
sure what's going to happen in your life, or someone you care about. I ended up getting sick, and that happens to
millions of people - even if you take good care of yourself. Yes, stress can trigger something, but
everyone has stress in their lives.
Who's to say that if I'd been better able to handle stress, I wouldn't
have gotten sick? I'm not going to blame
myself, and I don't think anyone should blame themselves. We don't know enough to know exactly how
genetic disorders get triggered, and bodies are just so complex. I don't think it's a cop-out to say that things
happen, that no one is immune to health problems, even though we'd like to
think it will never happen to us, only to someone else.
So I saw as a teen and
adult how someone with an invisible or visible disability/disorder could
flourish if their challenges weren't the only focus. I've now had a huge range of experiences in
the land of invisible disorders, though I certainly haven't experienced
everything. People with challenges don't
all have the same experiences; I've never been confined to a wheelchair, I
haven't had to learn to speak again because of suffering a stroke. Those are only two things that come to
mind... I'm sure someone else could come up with other experiences. Each person
is a unique individual, whether challenged or not; we don't all perceive things
the same way, and people often have different opinions. But we're still all human beings with thoughts
and feelings, all wanting to make contributions, to feel productive. It's important in the ongoing effort to end
stigma, for those with various disabilities to speak up, to show that we're
simply people with challenges. But it's
also important for those fortunate enough NOT to have any special challenges/limitations,
whether visible or not, to recognize that they aren't really so different from
those who do.
NOTE: I've written
before that my MAV was triggered by the hormone changes of menopause. I think hormones play a large role in
migraine conditions, and may be one reason migraine disorders are much more
common among women than men. My point in
this piece is that it's impossible for me to say exactly why my genetic
predisposition got triggered, and I'm not going to try to explain it, or blame
myself.
Hi Tamar,
ReplyDeleteThanks for your blog, it makes for interesting reading and I can relate to a lot of it. I have been solidly chronic with MAV and basilar migraine for 3 1/2 years, though I've been a migraineur (having some short chronic MAV and basilar spells since 12 years old) for not much short of 30 years. Like you, I think this chronic stage has been triggered by hormones, I began to feel different around 5 years ago and am now clearly in perimenopause. It was stigma that I really wanted to comment on: in the past few years my life has changed dramatically and it is not easy, why would it be, not being able to work, have real freedom/independence and isolated. I have found others attitudes have now driven me into a corner, more isolated than ever. Dealing with ignorance about specific disabling illnesses that are invisible is really hard work, it simply drives a wedge between you and some others as some are just never going to believe that you are truly ill. I find this really distressing as sometimes you just have to accept, that more people than not are of this mindset. My old self would have just moved on and found more genuine people to surround myself with, but being so disabled and unable to get out and about on my own, makes this almost impossible. I know what I need to do to move beyond the stigma, but I just can't physically do it. Stigma feels no different to bullying in my experience, it is often mean, nasty and undeserved. I hope I don't sound bitter, I don't want to, but the last thing any chronically ill person needs to deal with in addition to their daily physical challenges is stigma. It is often cruel, nasty and unkind.
Keep up the great work of sharing your experiences and insight.
Kindest
A
I don't know if you live by yourself... I hope you have some family support, and at least one friend you can confide in - even one can make big diff'c! I'm sorry you are so disabled... are you doing anything (therapy, etc) that helps at all?
DeleteYes, stigma is very very hard.... people expect you to be OK if you LOOK OK.... I think what' weird is that they see nothing and no one remembers "oh yea, I dont't actually know your story" Sadly I think people tend to be judgmental as opposed to not as a first reaction... maybe everyone is too self-absorbed, maybe we don't want to be reminded of our own fragility....