I’m Not Here to Inspire You

The character Morpheus from The Matrix with a copation that reads, "What ifI told you that when you tell me you thought you were having a bad day, but then thought of me and realized my life is not so bad" Do you know that you are not helping?

Disability and illness are cruel, but having them does not make an individual special. This may not be a popular opinion, but it is mine. Since I have both disabilities and chronic illnesses, I will take the floor.

I have been called brave, a warrior, or described as “suffering”. I have had great difficulty helping people understand why these terms are used a little fast and loose for my taste.

I’m told often how courageous and brave people think I am. Really? I’m not brave because I live with an illness and disabilities. What’s the alternative? I’ve said it in prior posts that living with obstacles doesn’t make me brave; it just means I’m not dead. Being not dead is certainly a reason to celebrate, but it doesn’t make me brave. I’ve had conversations with people who say to me, “I was having a bad day, until I thought of you. I know that no matter how bad my day is, it couldn’t be as bad as yours. I have no reason to complain, your life sucks compared to mine. I mean really, I don’t know how you get out of bed every morning to face the day. I would probably kill myself if I were you.” (Every one of those statements have been said to me.)

Everyone should be able to have a bad day, and not feel guilty about it. On the surface, maybe “my life is not as bad as yours”, may sound like a compliment, or that your validating their struggle. No. That’s like saying, “My life is okay, but yours- it’s really bad. Oh my God, you have a terrible life. I am so happy not to be you. I feel so much better now, because my life could be so much worse!”

Having a disability or illness does not mean that my life sucks. Look, I would never say my illness is a gift. That’s stupid. But yes, my life is good. I am rare because I receive veterans disability benefits in addition to ordinary disability benefits. To be quite honest, I don’t know if I would have lived so long without it. Back before it was against the law to discriminate against pre-existing conditions, (and even now) patients who need specialized doctors outside their network of care will die prematurely because their budget doesn’t afford them the luxury to pay the out of pocket network co-pay, and/or non-formulary medication. The United State citizens fear terrorist attacks more than people dying from lack of needed specialized care and prevention. You know what’s frightening? The comparison of Americans who have died from terrorist attacks vs citizens dying due to lack of medical care. Citizens of our country think it’s okay to call people on disability lazy, and denying coverage because some a**hole commits fraud. And yes, there are things in place that prevent a disabled person from supplementing their income. Because if they do, and it gets over between $500-$800, they loose their benefits and suddenly it’s no longer supplemental. So when illnesses flare and they don’t have the resources to pay co-pays for specialists and medication. Suddenly, they’re worrying about rent and food. And don’t get me started on pain management. It has nothing to do with pain and everything to do with preventing addiction. We force people to wait months at a time to see pain specialists because doctors have restricted abilities to prescribe pain medication. Yes, addiction has to be in the equation somehow, but thanks to a generation of medical breakthroughs, but lack of access to treatment due to income made handing out pain medication like M&Ms a preferred treatment. I once paid $5.00 for a prescription for percocet and $50 for the antibiotic to cure the problem. If I had to choose between food for my kid or medication until payday, I’d hang in there with the Vicodin until payday. Now, the stigma of pain medication has become so bad, people will walk around in excruciating pain, than risk being labeled an addict. This is why people listen to Jenny McCarty and Food Babes of the world. They promise them health because in the past, treatment was not available.

We are so dumb as a species.

Wait, what were we talking about?

Using terms like brave, etc… People have asked me how I’m doing, and instead of embracing the exciting things I share with them, I will get, “Oh Karen, you are so brave. You don’t need to be brave for me. How do you really feel?”

I have been complimented on my strength to get out of bed and dress myself. I’ve been give credit for just showing up. People show up, every damn day.

I hate being called a scleroderma warrior. I am not at war with my body. I’m trying to make it strong and healthy. I want the organs of my body to work together so I can go out and do things. I think that makes me a negotiator, not a warrior. My body is not at war. My body is negotiating peace with factions who disagree with one another. It takes time, patience and work, but we all do it. As we age, we do things to prevent high blood pressure and diabetes. We stop eating fiend foods because our metabolism slows down. The things I do to stay healthy, are the same as anyone else. Sure, some the medications are different, but the intent is the same: We’re negotiating for more time on earth. We’re giving in to concessions like taking medication and avoiding chili dogs, to live longer. I don’t know about you guys, but I’m 45 and I am working to get at least another 50 years.

When people ask how I’m doing, I will tell them I feel good, and they won’t believe me. They’ll reply with statements like: ‘Oh you must really suffer”; “I know you’re suffering”. Are they listening? No.

I could say, “Today, I won the lottery, had sex with Chris Hemsworth and instead of breaking up, my boyfriend congratulated me.” And I bet I would still get, “Oh, you are so brave. I just don’t know how you do it.”

I have shared a video in this post of a TED Talk featuring Stella Young. She nails it. Please watch. She is far more entertaining than this post.

Living With Scleroderma & Sarcoidosis Makes Me Not Dead.

Scleroderma is a chronic illness it oesn't make me a hero.

 

 

 

As a scleroderma patient, there are things I cannot control, but as a strong-willed control freak, I happily manage to control a thing or three.  

Recently, Facebook banned a photo of a woman with scleroderma, next to another scleroderma patient who did not look like she had scleroderma.  She did it to show just how different scleroderma affects each and every patient.  Since Facebook banned the pictures, she has encouraged scleroderma patients to share pictures without make-up.  I love this.  It’s a bold step into the limelight for many patients who wear make-up and long sleeves to avoid the stares from strangers.  After twenty years of hiding changes to my body, I am not ready to step into the patient limelight.  Why?  Am I chicken-sh*t?  Not necessarily.  Hear me out…

I admire patients who step out into public with their teal shirts answer questions and enduring the stares.  It’s not that I don’t want to talk about it and educate others about scleroderma and what they can do, because I’ve been doing it for twenty years.  I just want to do it in controlled settings.  For example, I won’t leave my apartment without wearing make-up, and something with sleeves that will minimize the appearance of my hands.  No, it is not because I’m ashamed.  It is because I don’t want to be stared at, or begin talking to strangers about my very personal medical care.  In the 1990’s I would tell people about scleroderma to anyone who would listen.  I would show them my hands, explain my care if they asked about it.  I guess in a way, I am burned out on the person to person explanation of what I have, what I do and how I cope.  Now, I have a blog with years of my personal experiences.  Anyone can access it.  Of course I want to meet new people, but not to talk about a medical condition that has caused me to spend years of my life dealing with my medical treatment.

Let me put it another way; taking care of my health is my job.  It’s my forty-plus hour a week job.  For those of you that work forty hours a week, would you like to discuss what you do every time you go to the grocery store?  Look, I know scleroderma patients need awareness.  I just choose to do it my way with the written words of my blog, and getting out and doing things not related to scleroderma.

At first, I thought I was a coward.  Why hide?  Why won’t I step into the limelight and show the damage sceroderma has done to my hands and face?  Some of you who follow my blog are familiar with my “vanity”.  I place vanity in quotations, because what some perceive my actions as vain, is not.  Do you want to know why I refuse to be photographed without make-up and un-tag myself  or ask to have my picture taken down for reasons only I understand?  Because I do not want to be remembered for having scleroderma.  I know, it doesn’t sound nice, but it’s my truth.  I’m not making excuses, I’m sharing because I can’t be the only scleroderma patient who feels this way.  When I die in fifty years of old-age, I do not want to be memorialized on a website that talks about my fight against scleroderma.  I want to be remembered for my sense of humor and my amazing son who will grow up to do things to make the world a better place..  When I die, I do not want anyone to say, “we lost another sclero-warrior”;  Or that I’m now a “sclero-angel”.  I just don’t.

Is this a severe case of denial?  Am I  oblivious to the possibility that the progressive, degenerative course of sarcoidosis I have in addition to the scleroderma?  I’m not oblivious to it.  I just don’t care to think about it.  Not because I have a choice not to think about it.  With every doctor’s visit I think about the fibrosis and granulomas, plotting to kill or disable me.  When I don’t need to be focused on it, I just don’t.

And there’s the argument that, “Karen, the pain of scleroderma doesn’t allow many patients not to think about it.”
Yes, that’s true.  I have experienced days and weeks at a time where I was in constant pain as my body hardened.  I used to ask for it to stop, until there came a point in my progression that in order for scleroderma to stop,  I would need to die.  I just accepted that scleroderma would stop when I die.  Then, I tried to figure out how to live while this was happening.

Right now, I have a stable prognosis.  At one time, we thought scleroderma may have run it’s course, but it hasn’t.  It’s going, and right now, it’s not going to kill me.  So right now, I have to live.  And yes, I want to blend and be not all about scleroderma all the time.  I realized I needed to control how I share my experiences when a woman with damage to her hands by rheumatoid arthritis cornered me at The Comedy Store and fondled my hands in disbelief and crying while I politely tried to squirm away from her.  Just because I share my story does not mean I have to stand there while someone looks at me and cries.  I am not there to comfort them and tell them everything is going to be alright.  I cannot be expected to do that, unless I am in a setting that gives permission to that.  That includes comedy clubs, Starbucks grocery stores and anyplace I happen to be.  I cannot tell other people I suffer, because I have the luxury of convincing myself that I do not suffer.  Honestly, I don’t believe I’m suffering.  There are times I do suffer, but the word suffering implies that I am constantly suffering.  I get frustrated often.  Sometimes, I’m in pain, but I cannot say to anyone that “I suffer from scleroderma”.  When I hear that phrase, I hear, “scleroderma runs your life”.  Yeah, in some ways it does, but I refuse to grant scleroderma that power in words and deeds.

Is that denial?  No, it is not.  I used to think I was in deep denial, but it is acceptance.  That’s it.  I control what I can.  If I want to get up in the morning and go get coffee, it takes me 120 seconds to slap on some make-up before I step out the door.  Not because I’m ashamed, but because I don’t want to draw attention to myself.  Of course people shouldn’t stare, but they do.  Not because they are a***oles, but because they are human.  One reason human beings are here today is because of our pattern recognition.  When we see something that falls out of the patterns we are used to, we are naturally curious, and curiosity results in stares and questions.  Kind of in the way a celebrity will wear sunglasses or a hat.  They just want to get a cup of coffee, and relax.  So, if you’re a patient who doesn’t wish to be called a sclero-warrior and be referred to as a sclero-angel after death, that’s okay.  Not because I say so.  It just is.  We don’t have to wear teal, or those damned bracelets of any color.  We can educate people how we wish to, and not have to be thought of as suffering, or as heroic.  Living with a chronic illness does not make us heroes.  Living with a chronic illness just makes us not dead.  How we choose to cope with it is our business.  We don’t have an obligation to walk around like teal billboards, unless we wish to.  And it we don’t wish to, that’s okay.  Because those who do, are no better or stronger than we are.  The just cope and share differently.  Of course its admirable, but I refuse to feel badly because I don’t share 24/7.  I do what I can.  Some do more, some do less, but we all do what we can.