Tag Archives: labels

Diagnosis

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Human beings by nature look to categorize things to make them more understandable. We put things in mental boxes so the world makes sense. Think about your interactions from today. I know I put people and things into little boxes.

But what happens when people don’t fit into boxes? It’s more common than you think. Maybe they don’t fit because of social norms. Or because the person dresses differently than one would expect. Perhaps their personality isn’t what you think it should be.

Note, these are all very personal perceptions. You choose how you arrange your boxes as well as who you place in them. My boxes won’t ever look like someone else’s. Sure, there is some overlap. After all, we’ve been boxing things up for thousands of years There’s bound to be some commonalities that are obvious.

My problem is I don’t fit in any number of boxes. I’m Autistic, which confuses many people because while I may be a bit “cold,” I’m still very functional. I have multiple illnesses that feed off each other, making true identities of the disease processes elusive. The treatment for one disease may very well set off another. My doctors, trained to put me in a box, struggle mightily with my health.

The worst part of this is sometimes we misplace things. we fill in blanks with our personal experiences rather than looking a bit deeper to figure out why someone is different. We pass judgment without all the facts. And, we rarely revisit the situation and revise our opinions.

Such is human nature. I have yet to meet a “perfect” person. We all have flaws, some more visible than others. When we insist on making people fit in boxes, we kill off some of that person’s essence. By denying our differences, we shortchange ourselves. Narrow definitions deprive us of rich experiences.

Your challenge: Open your mind to the idea that boxes can’t contain everything. Try to learn more about a person before you pass judgment and crate that individual up. You just might learn where some of your own biases and blind spots exist.

I’m not a criminal

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One of the sucky things about chronic illness is how misunderstood the process of disease is by many people. People get colds. Maybe they get a week-long stomach bug or an upper respiratory infection that last a month. Then, they bounce back. People cope with over the counter medications that relieve the symptoms so they can function, They are able to go on about their day, albeit with some discomfort.

Disease is a process. You get sick, have symptoms, figure out how to make your life better and move on. When you have a chronic illness, it’s the same except we never reach the “better” stage. It just keeps on going. Some days are better than others. Some days are so awful that getting out of bed is a challenge. Unless you’ve lived it, it is very hard to understand just how debilitating illness can be.

Debilitating. That is the key here. I use a variety of techniques and medications to allow me to function. Some days, it’s just some routine medications…insulin, Synthroid, nausea medications. Other days, I need more interventions to carry on. These may include anything from hot/ cold packs to ibuprofen to prescription medications. I know some use “borderline” illegal drugs (I live in Colorado), but I choose not to. All my medications are supervised by my care team. We all know what I have in my possession, how I take it and why.

Courtesy of the DEA, some of my medications have become more difficult to obtain. Thirty day supplies, no refills, national drug registry. I get it. American has a drug problem. In the process of solving that problem, I fell like I’m living in a police state. I know some people who have to show up for random urine testing or pill counts. There is so much fear by doctors that their licenses will be comprised, patients are treated like criminals.

Let’s be clear here. The medications I use are prescribed, monitored and discussed at great length by my care team. If I need anything stronger than Toradol, I go to a hospital for pain management. My process is so transparent that my care team has no concern about my medication usage.

But, the government does, Without even looking at my medical history, the government is making decisions that make it difficult for my care team to help me manage my disease processes. I’m spending thousands of dollars going to the emergency room because it’s the only place I can go for heavier duty pain management. Soon, I’m sure the emergency room will start struggling with pain management for me.

Drug seeker. Addict. Head case. Drama queen. These are just a few of the labels that have been used  in the past to describe me. Not potassium deficient (causes cramps and heart attacks). Not chronic illness known to cause pain (gastroparesis). Not acute injury unrelated to illness. I broke my wrist and was denied pain meds because of my “history.”

It shouldn’t be a crime to provide appropriate pain management for chronically ill patients. I don’t need palliative care. I do need some extra help sometimes. That’s not a crime. Telling me to take aspirin when I have a compound fraction in my wrist is inappropriate. If a “normal” person had a broken wrist, they would be prescribed something stronger. Because I am no longer opioid naïve, I’ve been labeled.

My life is complicated enough that I don’t need my doctors to be afraid to help me manage my pain.This goes for anyone suffering chronic pain. I’m all for non-medicinal (hot/cold packs, stretching, etc) solutions, but there is a point where options are limited. After 13 years of living with chronic illness, I get the concerns. I also need people to understand that this is my life now and it includes some heavy-duty pain medication sometimes.

I’m not a criminal. I’m a human being in pain. I need to be able to function. Being bedridden is not an option for me. Stop making me feel guilty on top of feeling sick. I have enough physical and psychological issues related to illness that I don’t need judgment.

Your challenge: Have honest conversations with your doctors. Consider what level of pain management, if any, you truly need. Don’t ask for more than you need. Please don’t judge those of us struggling with chronic illness. We’re doing the best we can. Most of all, remember that many of us have been ill for a long time and have a pretty good idea of how our bodies work. Help stop the stigma and stereotypes we fight every day. Thank you.

 

Perspective

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I was asked a question on social media last night along the lines of “tell me your perspective.”  I had to think about this. How do you explain to someone that you are the sum of you experiences when they want to focus on one aspect?

I firmly believe that everything that has been part of my life has shaped me into who I am today. Good, bad or indifferent I learned from whatever it was. Growing up with 3 siblings? Learned how to both walk away and blow raspberries. Forced into conformity in school? At the time, I didn’t mind. There were many of us in that position. Now…I wish I had known that they way I think is just fine. You may not understand it, but that’s not important. Well, it is because I need you to understand that different is not threatening to you.

That’s what all this comes down to in the end. When people run across something different, it challenges us to think. To look outside our zone. To try to understand new ideas. Some people are more adaptable to change than others. This is where the skill to know when to press an issue or when to tread lightly comes in handy. Alienating people rarely accomplishes anything.

My perspective on labels….they help people understand broad concepts. They are dangerous when people assume that the label limits the possibilities. They are dangerous when people assume everyone in that category will act exactly the same. So, helpful to quantify, sort or understand. Harmful when you assume a label is the answer.

My perspective on living with Autism? I have my own set of challenges. While I could run down a checklist, the reality is each challenge is truly my own. It’s something I must understand and learn to live with. These are my circumstances. When you think about Autism as part of a person, you begin to understand that it doesn’t define people any more than having brown hair does.

When you change your hair from brown to blond, it eventually changes back to brown because that color is part of you. Trying to force an Autistic into your idea of “normal” brings change in the short-term. In the long-term, the person will return to their “normal.”

Your challenge: Acceptance. Diversity is a good thing. The world is a whole lot smaller now than it was even twenty years ago. We can all learn from each other. While it may be a struggle, or even painful, we must learn as a society to stop fearing “different.”

Blue

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Yet again, a certain organization has spoken. Well, it’s one person who happens to have a large following. And following is the correct word in this case. I get that the idea of a cure for Autism is desirable to some. But like many other things, it’s nowhere in sight. Which means instead of puffing from that pipe, maybe you should be focusing on what’s in front of you.

There have been a number of pieces written about this latest speech. The one that resonates most with me can be found here…http://www.emilywillinghamphd.com/2014/12/on-autism-speaks-suzanne-wright.html

If you took the time to read the blog….I am not less than. My children are not less than. My students are not less than. Your family members are not less than.

I am not a puzzle piece. I am not the color blue. I am not “missing” anything except acceptance. Why is it okay to assume I am deficient because I don’t think the same way as other people? Newsflash!  We don’t all think the same.

One of my favorite social media pages can be found here….https://www.facebook.com/ColorTheWorldAutism

Please stop following and start leading. Help others understand that people are not defined by catchy phrases and “assigned” colors. There are so many organizations in our communities that directly assist people instead of spending millions on promoting one individual’s agenda that you should have no problem becoming both part of your community and part of the solution.

Live. Learn. Love. Accept.

How to Love Me

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At first blush, it seems simple. Just decide we’re compatible and let it roll from there. In reality, it’s messy, because I’m human just like you. Regardless of what religion professes about love conquering all, it rarely does. Probably because all the other emotions get in the way.

People do things in the name of love all the time. Some are really sweet gestures, like remembering a birthday or bringing home flowers just because. Some are much grander, like marrying for better or worse and meaning it. Or giving up a kidney for a stranger. Or even being an organ donor so others may have a shot at a life after you have passed. Those are some pretty grand gestures of love.

But what of the day-to-day love that we all need? I know I’m difficult. I have my way of doing things and I can be pretty stubborn. I can do many things that people without Autism can do. I can even feel the judgment from others that I’m not Autistic enough to be a member of their tribe. If we truly love one another, why do we keep insisting on labels?

Labels separate us from them. By nature, they divide groups. Labels make it easy to say “I hate cheese” without even trying all the different flavors of cheese out there. A blanket statement about a labeled group is so much easier to use than to get to know all the different types of people in a group.

Autism is a spectrum disorder. There are people who struggle with what we generally consider the most basic of tasks…self-care and communication. Others struggle with academics and social situations. Still others experience awkwardness in conversations. We all have the same disorder. And, I can assure you, we all want to be loved.

So, how to love me. Accept that I’m different and it’s okay. I do the same for you. Yep, that’s right. Some of the stuff you do strikes me as pretty strange. That whole “look me in the eye thing” is weird. Your love of dill pickles? Um, yeah, not touching those. See, it’s okay. Love me for being different and showing you different things. Love me for expressing thoughts that you may not have considered. Love me for all the quirky behaviors I have. Because you know what? You have some pretty quirky things going on too.

Most of all, just love me as a fellow human being. Being different doesn’t make me less worthy of your love.

Label this

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Hi! Thanks for stopping by! Would you like something to drink? Tea? Coffee? Soda? How about a snack? Popcorn? Chips? Candy? Maybe something healthy like an apple? Oh, you’re on a diet. You only eat vegan. You don’t consume caffeine. Is that apple organic?

I find myself pausing at moments like these. You came here looking for something. I offered up options. You turned me down, questioned and judged me in a split second based on this exchange. I’m a caffeinated, junk food addict. Period.

Well, you’re right on some days. I do like my caffeine and I certainly like my popcorn and potato chips right next to my Snickers bar. But does that really mean I’m an addict? Did you just lump me in with a group of people who absolutely cannot live without “something?” That’s a heck of a label to put on someone who enjoys treats periodically.

The way you label people marks them forever. Yet, everyone does it. Got a speeding ticket? Insurance company now says you are a high risk driver. Don’t look like the body mass index chart says you should? You are obese. Wore the wrong clothes to work today? You are out of touch.

Do you feel judged yet? Because I do every day. I think through a decision a hundred times. I’ll read this post for the next few hours before I hit publish. I’ll make sure no one has the opportunity to see me as less than. My car is perfectly suburban. My house is mostly clean in case someone drops by. My social media posts are mostly vanilla. My clothes are neutral. It’s a lot of effort to go through just to avoid a label.

I’m sure someone will still look really hard to find a chink in my coat of neutrality. It’s no wonder over 50% of Americans have some type of mental health need. Between being judged and holding onto that superiority complex, we’re a collective mess. Since we **need** instant gratification, here’s your pill.

But, what if there is no pill? What if you are living with a chronic illness? What if you’re neurodiverse? Ahhhhhh!!!!! What should I do?

I know. I’ll educate others about the damage labels cause. I’ll write about how nouns were designed to give distinct meaning to objects. I’ll talk about the fact that the English language lends itself to labels so readily. And, just for fun, I’ll give you this link so you can understand how the English language is supposed to work  :http://en.wikipedia.org/wiki/Sentence_diagram.

A tree is a tree. A table is a table. A person is a person. Any descriptors are actually observations. It’s an apple tree, because it produces apples. It’s a dinner table because it seats four or more. . It’s a person because it looks like one. Stop.

That’s right. The correct label for me is person. Because that’s what I am. No more, no less. You can put all the adjectives you like under that diagramming line, but it doesn’t change the fact that I’m a person. Adjectives are judgments.  Artificially assigned tags that seek to clarify the noun. I don’t need clarification. Person will do just fine.