Posts Tagged ‘stigma’

Mental illness, it could be you

shadows of the past may come alive to help us be better people

“Hi,” the woman said shyly.  “I’m calling about a butterfly garden.  I saw your ad in the paper.”

More than a decade has gone by since I received that phone call.  I still remember how I felt.

“I live on a fixed income due to a disability,” the woman added.  “I was wondering if I could get a small butterfly garden and how much that would cost.”

I remember how I felt then, but the way I feel now is much more powerful.  I feel terrible about the way I handled that call.

The woman told me where she lived.  I had heard of the place, but didn’t know much about it.  I knew only that the people who lived there had some type of mental problems.

I talked with my gardening mentor who encouraged me to go see the woman.  I wish I had taken his advice.  I can’t remember who else I consulted with, but I was most certainly influenced in the other direction.

The woman called several times telling me how much she loved butterflies.  I told her the price for a small garden.  She explained that she received her check each month and asked if she could make monthly payments.

People said things like, “those people who live there are crazy,” and I vaguely recall one person telling me that I would be making a mistake to get involved with someone like that.  I concluded that the woman wouldn’t be able to pay like she said she would.  I assumed several things that today I am not proud of.   I chose not to meet with her.

As I write, I really can’t believe that was me.

I wasn’t going to write about this memory when I began this post, which is one of my many challenges in writing.  I’ll start a story or some type of tale and the next thing I know, I’ll be back in time, ten or twenty years into my past.

I wanted to tell you about my dream of creating a healing garden for people fighting and living with mental illness.  A place for healing and community to happen.

I wanted to tell you about an outdoor bed of hay framed with sunflowers and chocolate cosmos laced around the pillow shams.

Sometimes the past meets the present and I get lost somewhere in the middle.

The apartments where the woman lived is a thriving community today, as it was when she called me all those years ago, back when life was much easier for me.  Back when I thought the problems those people had would never be ones I would face.  Oh no!  Not me or my family.

I was terribly wrong and completely ignorant.

Mental illness doesn’t discriminate.  It can strike any person, any family and in any place.

Ten years after I turned down the woman’s beautiful and brave request, I found myself at the same apartment building where she had wanted her little butterfly garden.

I was there applying for my adult son to get an apartment in that community.

I had forgotten about that phone call until one day when I went to visit my son there.  Several of his neighbors came outside.  We walked around the building together finding many places where we could plant, of all things, a butterfly garden.  The memory slapped me in the face.

I realized that my son was one of those people.

My bright intelligent son who had superior verbal skills by age three, was a good student other than talking too much from being bored, was in a grand way always enthusiastic about life, winning school awards in science and later in kayaking, was struck with a mental illness.

Today, I am a woman who must sometimes say, “I live on a fixed income due to a disability.”  

Today, I realize, I am one of those people too.

Turns out we are all the same and always were.  The differences I imagined came from cultured misconceptions of immunity derived from ignorance and stigma.

Thank you for visiting my blog,

dogkisses.


You cry fibromyalgia

peace prevailed

Peace of Home

The car was parked unusually close to my apartment.  It was foggy and I didn’t recognize the passengers.  I had to take my dogs out.  I usually take both dogs, but I only took one this time.  Maybe I was subconsciously preparing for the fight or flight response.  I surely can’t respond with two big strong dogs pulling on me.

They were still sitting in the car when I came back to get my other dog.  I said hello and the young woman in the driver’s seat returned my greeting.  The subject of my neighbor quickly came up.   He’s been harassing me for two months.

I thought she was being nice but then she cursed.  I asked her to repeat herself.  She verbally insulted me.

I have a rebellious nature that doesn’t always serve me well.  I responded, but not by taking flight, which I should have done.  I told her what I thought of my neighbor and that’s when he got out of the car.

He had a strange hat on and didn’t look like himself.  She got out right after he did.  He was clearly more intoxicated than I’d ever seen him, which must have taken an incredible amount of alcohol.  He walked around the car towards me.  He began his attack with a vulgar one-man show.

I was stunned but not too surprised by my neighbor’s behavior.   It was a clear view of what I had felt during the times I had tried interacting with him.   There had been a constant current of contempt seeping from his pores and he reveled in it like the insects in the sticky sweet sap from the wounded oak tree in my yard this past summer.

Being around him each time had left me raw and open, as if like the oak, something had struck a part of my foundation.

I made brief eye contact with the young woman.  We had both stood silently while he acted out.

“Why don’t you try talking to him?” she asked me.

Her remark actually surprised me more than the neighbor’s behavior had.

“You see the kind of person he is?” I asked her.  Obviously she didn’t.

“He’s really a good guy,” she said.

I guess she’s an optimist.  Maybe she believes she has magic powers that will reveal this “good guy.”

His behavior over the past two months had led to eviction papers but he blamed me.

I guess I was being the optimist too because I thought if I asked him one more time to be quiet, especially in front of a woman he wanted to impress, that maybe he would listen.  I was wrong.

“Why don’t you just leave me alone?  I need sleep.  I have…’’  I was going to say fibromyalgia, but he interrupted and began an outlandish verbal bashing.

“Oh and what do you say?” he shouted gloriously.  “You say you have fii bro my algia!  And what does fii bro my algia mean!  That you hurrt!”  He drew out the words fibromyalgia and hurt with great scorn.

He shouted fibromyalgia several more times.  Amazingly he pronounced it correctly, but then he had told me several times about having been the smartest student in his high school English department.  I’d found this curious because he reminded me of it every time I mentioned my writing.  It seemed like he needed to always make it understood between us that he was smarter and better than me.

This is all much clearer to me now.  Now that it’s all over and I can hear myself think again.  For a while, all I heard every day and night was him.

He looked up at the sky continuing to shout out, “Oh I hurt! I hurt! I hurt!”

“Oh! Oh! Oh!” he kept on.  He started physically mocking a person in pain by holding his body in ways to act like he was hurting.  He included sexual innuendos while he was carrying on.  It was a crude and ugly scene.

I can’t say why I stood there witnessing this behavior as long as I did, although I think it only lasted a short time.  Responding to a sudden outburst of verbal abuse and being bullied like I was isn’t something I’m well practiced at doing.

“You’re a c**t,” he said.  There it was.  Hatred that I knew was there.  I’m not sure if this surprised me or not.  My memory of the event is like one moment in time.  I remember more how I felt afterward than I do about when it was happening.

He briefly paced around in a small circle, obviously spewing with anger.  He called me that name again.  His friend looked a little ashamed, but she didn’t interrupt him.

I wondered how could she be okay with what we both saw.  I failed to remember that she’s looking beyond his behavior at some fairy tale in the sky where he’s that, “good guy.”

“I work every day,” I said.  I knew nothing I could say would mean anything to him, drunk or sober, but I’d said it anyway.

“Oh yeah, and what do you do!  You cry the fibromyalgia blues!  You sit home on you’re a** and cry those fibromyalgia blues, and oh how it hurts.”  He tried to sing but was way too intoxicated.  “I hurt, I hurt, oh I hurt,” he shouted, still looking at the sky.  I don’t know why I so clearly remember him looking at the sky while he ranted and raged.

I’ve never cried any fibromyalgia blues to that guy.  I did cry twice around him while attempting a friendship, but my tears had nothing to do with fibromyalgia.  He was by far one of the rudest people I’ve ever been around and twice he insulted me in ways that caused me to eventually stop speaking to him.   The few times I visited him felt like I had entered his personal war zone.  Like he took a break from shooting arrows in his backyard and invited me over for some easy shots.

He continued with his drunken spew of contempt standing there in front of my porch.  “You sit and cry how you hurt so you can get a check!”  He emphasized the word check with a high note.  Then of course he mentioned tax dollars.

Some people who claim patriotism don’t seem interested in the big picture of what helps shape our country into a place of opportunity and freedom — for every citizen.

In America we can better our lives, all of us, not just the able-bodied working folks.  We can be anything we want to be.  We strive to make sure that every child receives an education.  We have social aid and many government programs to help needy children, and their families.   We also help our disabled and elderly citizens.   At least, those are American ideals.

People who don’t understand disability unless there is a wheelchair or a death-bed in sight can be cruel, like my neighbor.  Some people will automatically assume a person without these visible affirmations of a handicap or illness is a fraud.

I continued trying to defend myself, which was an odd experience.   I didn’t much care what this neighbor thinks of me.  The words coming out of my mouth were like dampened cries from another place.

“I paid taxes.” I said.  I knew it would only make him madder so again, the rebel in me most likely wasn’t serving my best interests, which is ultimately to have peace in my life.  Obviously this means walking away from certain people or situations.

“Yeah.  I’m sure they took a little out of your check,” he stammered.

“You are nothing,” he said.   He stomped out his cigarette on the ground.  “Nothing,” he repeated.

I remember this part clearly.  Finally, he began walking away.

“I’m not nothing,” I said quietly.  I almost cried but stopped myself.  I looked into the young woman’s eyes again wondering, I guess, what she thought of her friend.

“I know that,” she said.   She didn’t look pleased about her friend’s behavior, but she was looking for the sunny side of a burnt fried egg.

“You ain’t nothing,” he stopped to say once more before going inside his apartment.

“I’m better than you,” I said calmly, although that response surprised me.

“Ohhh yeah!  Oh you are sooo good aren’t you!”

“Yes.  I am.”  I said.  “You’ll be leaving soon,” I added.  I shut my door.

That wasn’t his last performance but he’s gone now.  It was a long two months.

The short-lived relationship I had with this person was an eye-opening experience for me.  I thought I’d be able to spot a narcissist anywhere and easily.

Spotting one and ducking one are different skills.

I don’t know how narcissistic my former neighbor is, but he sure had a mighty large dose of himself.  Arrogance and a sense of superiority over most of humanity were traits he proudly displayed.  I didn’t know what to think.  One day I asked him why he invited me over if he didn’t like anything I ever said and put me down all the time.  He said I took things wrong, adding that his friends were all fine with his ways.

I guess there are many reasons a person criticizes others, particularly when it is done with great passion.

“What you see is what you get,” I remember saying to my neighbor months ago.

I finally decided that people who spend a lot of time hiding think everyone else is doing it too, but that’s just a personal theory.

From now on, I’m going to follow Leslie’s turn on this phrase, “What I see is what you get.” which she talks about in a recent blog post on malignant narcissists.

I forgot to keep the light in the watchtower glowing.  I forgot that when people prove they are mean and rude to get away from them if I can, instead of trying to figure out if I imagined them being mean and rude.  I forgot again to listen to myself.  I keep doing that, but then forgetting does remind me to remember.

Thank you for visiting my blog.

This post represents several things to me personally, the best of which, I guess, is what it was like being bullied, although I didn’t write about the aftermath of that evening.  It was as hard or harder than standing there witnessing my neighbor’s abuse.

It’s also an extreme example of stigma and disbelief around invisible illness.  Although this person was intoxicated, I’ve had the stones thrown at me for looking fine and receiving disability benefits.

It’s about learning to walk away, right away, from people who behave destructively, especially when I am the target.  As with most of my posts, it seems to be about listening to myself, or not, depending on how you look at it.  I prefer to believe that I’ll eventually get wise(r?).

Also, my friend CJ, who has a great blog about living with fibromyalgia, has repeatedly encouraged me to keep on writing.  Write anything she said.  In that respect, this post speaks to my rather frequent unfortunate entanglements.

With all that said, I’m happy to have my personal space back, my peace of home and am rather looking forward to the rest of this beautiful season.

Peace



Just in time.

“Ms. Dogkisses,”  the woman said, “Why do you wait until the very last minute to pay your bill each month?”

I looked at the clock on her wall.   In my world, 4:45pm was early.  Her office closed at 5:00.  It wasn’t only the time of day,  it was also the last day of the month that I could pay my bill without my auto insurance being canceled, so I was just in time.

I didn’t know what to say.  I guess I looked bewildered because her level of irritation immediately lessened.  She sat down at her computer and asked me to have a seat.  So I did.

I work under pressure.  Sometimes within minutes of a deadline.  It probably has a lot to do with chronic fatigue.  Maybe the pressure of a deadline gets my heart pumping and my adrenaline flowing and that’s the only way I can work!

She had a bowl of candy on her desk — with the good candy in it, like chocolate Kisses.  It was not your average office candy bowl with the hard peppermint candy or artificially flavored suckers.  I politely asked if I could partake and her warm smile made me feel like I could have the entire bowl if I wanted it.

Enjoying the chocolate I began to talk.  Sometimes, when I’m upset or nervous and must interact with people I talk too much.  I tend to tell the truth about what’s going on in my life.  I just start telling.  I usually manage to get a few laughs as I try and wrap my pain in humor.  Sometimes  it backfires and someone cries.

It takes energy for me to pretend I’m okay when I’m not.  Since my energy is endangered and possibly on the brink of extinction, I don’t try as hard anymore to make others feel better about how I feel.  I try to follow the social norms as much as I can, and manage pretty well most of the time.  Sometimes things get me, little things such as the normal greeting we are use to in America, “Hello, how are you?”

We are supposed to say fine and move on.  It’s easy to say fine to someone like the clerk at the register in the grocery store, but other times it’s harder.  The other day I was checking in for occupational therapy for my hand.  The clerk asked me how I was doing.  Well, I was very sick.  I was dizzy and thought it possible I might pass out before I could get upstairs.

“I’m fair,” I said, and I even gave a hint at a smile.  She was disappointed.  I get that a lot.  Fair is simply not good enough for many people.  I’m amazed at the responses I get from complete strangers because I said I was fair.

So, there I am paying my bill, feeling nervous that I interrupted this woman’s day by arriving just in time and I start talking and telling.  I tell the woman a few things about my life.  I tell her about my time.  I tell her that I have a son dealing with some hard things in life.  I tell her I’m overwhelmed.  I eat some more chocolate.  I don’t know exactly what it was I said that she most related to but she suddenly stopped typing.

She turned to me and asked if I would tell her more.  Her eyes had teared up.  I told her a little more.  Then she tells me.

She tells me how odd it is that I came in when I did and said what I said.  She tells me how she is completely moved by the things I said.

“I’ve never heard someone talk about these kinds of…” she paused, “problems or illnesses, whatever they are, the way you just did.”

I wasn’t sure how I had talked about anything other than being open about the way I felt.

She told me about what was happening in her life, which sounded a lot like what was happening in mine.  I listened.

Before I left her office she told me she had an epiphany, although I wasn’t sure what it was.  She said my timing had been personally important to her.    She was overwhelmed, as I was.  I don’t think she had a way to put that into words.  I guess that’s what she heard from me.  A way to talk about what is hard.

One thing that I think changes for those of us who live with chronic illness is time.    We are given time to reflect and think about life.   We also learn, as it seems we must,  how to talk about the difficult things in life.  This isn’t easy.  I believe that learning how to better talk about what is hard is part of our healing journey.

It’s hard talking about what is difficult to talk about.

I’ll probably continue to talk too much when I’m nervous.  I’ll probably continue being too honest at times.  I have tried to change this about myself,  but I can’t and I’m too tired to fight who I am.  I’ll most likely continue saying I’m fair when fine is just too far for me to grasp.

I’ve been told I wear my heart on my sleeve, that I cannot hide and that my eyes tell things about me.   I have in a way been forced by this part of who I am to learn how to talk about what people see; what I cannot hide and do not want to anyway.

Sometimes this part of being me works out alright.  My nervous honesty worked out alright paying my bill.  I think I’ve gotten myself out of a couple of tickets with sudden outbursts of utter truth.  I told the truth about why I was speeding (hard times!) and then another time about why I was driving — briefly without a seat belt — while tired in the middle of the night (hard times again!).   Both times the truth came out of my mouth faster than I could think.  Both times the truth was so bazaar the officers let me go.

Sometimes it’s good to talk about what is difficult to talk about.

The image of French Rose by, “The Graphics Fairy.”




Fibromyalgia, Attitudes and Acceptance

The Buggy Ride

Find Something Fun to Do

Fibromyalgia, as with any serious and chronic illness, can drastically alter your life.  Mine has certainly changed.

I had a business planting flower gardens to attract butterflies, which I totally loved.  Being a butterfly (and hummingbird) gardener was a big part of my identity.  There were many things I identified with and didn’t know how much until I couldn’t do those things anymore.

I remember when physical pain first started to concern me.   I would go out to my garden every day to do something.  One day I noticed how stiff my joints were.  I bent over and felt pain in my hips.  Then it started hurting in my ankles.  It was a new type of pain that I had never experienced before.

I’d been bitten by a little deer tick earlier that summer.  Little did I know this might change my life.

One doctor said I might have fibromyalgia, even though hardly anyone talked about the condition at the time.  It was nearly a foreign word.

Due to inadequate health care where I was living, I didn’t get to see a specialist.

I had dealt with arduous episodes depression in the past.  I had already in many ways, gone through a process of elimination as to what I identified with in life.  I stopped my gardening business and later went back to college part-time.

I moved to a metropolitan area after the tick bite that summer when the joint pain had started.  I believed the health care would be better and I think it has been.

I was bitten by another tick in 2005 and I was infected with Rocky Mountain Spotted Fever.

The doctors diagnosed me with Chronic Fatigue Syndrome and later, fibromyalgia as well.  By 2006 my life had turned upside down and illness defined every moment I lived.

Just about everything in my life has changed.

I can’t imagine, not as I write, what kind of job I could hold down with the levels of fatigue, brain fog and pain I’m living with.

I certainly can’t plant gardens anymore.

My hobbies are less active. My walks are slower.  I let my dogs walk me more, instead of me walking them for my cardiovascular workout the way I did before illness.  We go slower and stop more often.

Time is different too.  I can’t plan for events like I did before, which means I miss out on many things I once enjoyed doing.  I don’t know if I’ll be in pain two weeks from now or even tomorrow.  I could wake up so tired tomorrow morning that brushing my teeth will feel like I’m climbing a mountain.

I am grateful to receive disability benefits. I have health insurance.  It’s pretty hard making it on a low income.

Some people look down on those of us who receive disability benefits.  People complain about their taxes, but I pay taxes too.  Every day in some way I pay.

If a person can walk and talk then some people accuse her or him of being lazy, enjoying sitting home, doing nothing;  all just to get, “a check.”

The monthly income from disability benefits is important, but the health benefits and housing opportunities are a crucial part of disability benefits.

I was once a firefighter too.  Part of my identity had always been that I was physically very strong.  I was proud of this and enjoyed recreational activities, especially while raising my son.

Another part of my identity was being able to handle a lot of responsibility.  I was a single mother who worked hard and I burned the candle at both ends.

An expert in fibromyalgia told me this is the case with many people with this condition.  The majority of patients, he said, never were the kind of folks who sat around all day doing nothing.  Just the opposite for most of us.  We were athletic and go-getters.

I grew up in a very orderly and clean house, which is how I prefer things, but that’s one of those things that changes — preferences.  I’ve had to give up many of my preferences.

I hear all kinds of remarks from people who don’t understand what they can’t see.  I learned from having depression that having an invisible illness, such as fibromyalgia brings stigma and misunderstanding.  Many people don’t believe what they can’t see.

People say the weirdest things.

“I work in my yard (all day) because I have to.”

“I have to work everyday because I don’t have a choice.”

I stopped working because I didn’t have a choice.

“I wish I could get paid for feeling bad,” a neighbor told me.

“All you do is suck air,” a close relative remarked when learned that I was receiving disability benefits.

“You just get worse and worse don’t you.”  (Same relative).

“You sure do stay sick a lot.”  Lots of people have said that to me over the years.

Some people mock fibromyalgia.  Most people have no idea what it is.

Those of us suffering with invisible illnesses know that these attitudes and remarks are ignorant and not true, but they can still hurt.  Not only do they hurt, but they also cause us to withdraw into isolation.  We become alienated from society, our community and for some of us, from our family.

People with fibromyalgia often talk about having good days.  This means we have days when we wake up with some energy and less pain.  We can do more on these good days, which causes some people to think we’re faking illness.  If they see us on a good day, then we get accused of falsely claiming illness or disability to get out of work.

We’ve all heard people say, “You look just fine.”

A former doctor of mine once, during a frustrated conversation about pain, asked, “Where do you hurt?”

It was more of a statement than it was a question.  I didn’t know what to say.

“Well, my nose doesn’t hurt,” I answered.

She once referred me to a specialist for a digestive problem.  He was horrible!  He asked about the fibromyalgia, and then depression.  He was determined to believe that any problem I had, even the one I was there for, which was the result of an infectious virus, was all in my head; not neurological but psychological.

The doctor had suggested I go see the fibromyalgia specialist who had moved away.

“You look perfectly capable of driving four or five hours to me,” he said.  He failed to realize that I would have to go see the doctor and drive back home!

He continued and asked, “Did you walk here from the parking lot?”

“Yes,” I said, trying not to cry, but the tears were coming.

“Well, then you could drive four hours if you walked from the parking deck, and why are you crying?”

I had forgotten that I had instead ridden the minibus to the front door of the hospital from the parking lot.

“Why are you crying?” he asked again, sarcastically.

I told him I was sick, in pain, weak and tired.

I chose to change family doctors, never to see that specialist again and, my life has been much better ever since.

My current family physician understands fibromyalgia is a complex and painful condition.  He did suggest that I make a trip to the fibromyalgia specialist, but only when I was able.

I was finally able to go see the doctor.  I told him that my family physician wanted his advice.  He said to tell him he was doing the right thing by treating my pain.

He reminded me that it isn’t my fault that drugs, such as Lyrica and Cymbalta, made me sick.  Some patients cannot handle those drugs.  I’m one of them.  Some patients need tried and true pain medication, for pain.  Perhaps that is a little too simple for some doctors.

The specialist also said a patient should not be expected to live in pain when there is medication available to treat it.  He said it was neglect when doctors choose not to treat pain.

I told him about the remarks from my former doctors and nurses.  He said to stay away from those people adding with a compassionate tone and a bit of humor, “They are bad for fibromyalgia patients.”

He was a great doctor!

Even though we know more about fibromyalgia now than we did only a few years ago, there are still plenty of doctors and other medical professionals who will say just about anything other than, fibromyalgia hurts!

They’ll say things like, “It’s a label you do not want.”  They ought to say it’s a serious illness you do not want!

We’ve most likely all heard the phrase, “It’s a trash can diagnosis.”

I think many people do get wrongly diagnosed.  I’ve met a couple of people who said things like, “I had fibromyalgia for about three months.” Thinking

It’s hard to let go of all the things I used to love doing.  It’s hard accepting chronic illness.  It’s harder hearing hurtful remarks from family.

I have a few things I enjoy doing.  I started this blog, which I do so enjoy.

I love living with dogs.  They take me for walks and help me get through many hard times.

I have a “magic bike” and though I can’t ride it up hills or too far, it’s great fun feeling the wind on my face.  It reminds me of myself.

I hope if you or someone you love are living with chronic illnesses and conditions, that you can find something to do that makes your life easier and more meaningful.

Thanks for visiting Dogkisses’s blog.


dogkissesthat's a mighty cute dog!dogs never accuse you of faking anything