Diagnosis

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.

Again

Yes, again. I spent 5 long years being told I’m a drug seeker. My illnesses are psychosomatic. I am making myself sick. Munchausen’s Syndrome. Finally, I received several diagnoses that explained everything. Five very long years.

Last week I fell ill from a common virus. In less than 15 minutes, a doctor completely wiped out everything I went though. Invalidated said diagnosis. Put it in my medical record that I’m only after drugs. That the only illness I have is psychiatric.

Unless you’ve lived it, I doubt you can understand how crushing this is. People with chronic illness not only have to fight their illnesses, they have to fight for their medical care. Every doctor thinks they know the answers. They invalidate each other, confusing patients and creating chaos in their wake of emergency room diagnoses.

One of the doctors this past week told me a diagnosis from one doctor was not sufficient. Seriously. The diagnosis came after 6 months of testing at the Mayo clinic. And somehow this doctor practicing in a town of 400,000 (whose resume is limited to a single city) knows more than 14 docs who have access to thousands of patients with rare disorders.

I doubt that the doctors have any idea how much damage they have wrought upon me. I doubt they even gave it a second thought when they wrote those notes. Just another piece of meat passing through. Another set of notes. No matter that I have more volumes of medical records than my friends combined. Just ignore everything that has already been diagnosed because YOU know better.

Now I begin the process anew. I don’t really have the emotional energy to do this, but if I don’t, when I need emergency care again I can guarantee I won’t be treated appropriately.

Remember, words matter. Once you’ve said it, you can’t take it back. Think about the implications of your words. Consider how much damage you can cause with your words. Choose wisely.

I care too much

Empathy: noun

1. the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.

2. the imaginative ascribing to an object, as a natural object or work of art, feelings or attitudes present in oneself

 

You may have heard that Autistics don’t care about others. That we are unable to reciprocate feelings or provide visible signs of caring. I have to tell you…that is just not true. Sometimes you have to look a bit deeper to see these feelings, but I assure you they are present.

They are present in a smile, a hug or a hand grasped in your own. Words do not necessarily indicate emotions. Non verbal communication plays a larger role in conveying feelings than most people think. While people accept smiles and giggles from babies as signs of contentment, they seem to think that older people have to “tell” their emotions for those emotions to be valid.

It’s just not true. There are two reasons I’d like to share with you. First, words can be misused or misunderstood. Some words are just patterns we all repeat, like “have a good day.” Meaningless chatter that works as social grease. The multiple meanings of words in addition to the varying interpretations of intensity lead to misunderstandings. I love sunny days, but not the same way I love people in my life.

The second reason is that  I empathize with many people. I feel their pain as if it were my own. I recognize younger versions of myself in the students I teach. I can see where others have made mistakes that I made in the past. If I verbalize any of these feelings, they are usually misinterpreted. I just can’t seem to match my emotions to my words.

So, gestures. A hug. A smile. A hand shake. Doing something for someone. These are rarely misunderstood. There’s an almost universal language of unspoken feelings that most people “get.” This is a good thing for me. My words fail me so often that I wonder exactly how people perceive me.

Please don’t mistake my awkwardness for unwillingness. Understand that while I am fairly adept in social situations, I’m constantly stressed by them. I’m thinking 10 steps ahead, running through the scenarios and hoping I’ve picked the right response. I notice your body language and try to follow that “conversation” as well. When the two “conversations” don’t match, I try to figure out which one I should follow.

Yes, I care too much. At the end of most days, I feel I’ve failed. I feel I could have done something differently that would have made someone’s day better. I could have been more helpful. I could have been more kind. Yes, I beat myself up over these interactions that many of you probably don’t even give a second thought to. It’s cool. Just understand that my hesitation to join in is probably based out of fear of failure, not because I don’t want to join, but because I’m scared to death of that chasm of misunderstanding that looms right in front of my feet.

I’m not a criminal

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 decision 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 (cause 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;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 dy. Thank you.

 

Respect

It’s really not hard people. Just keep in mind that every single person has opinions. Those opinions may not be the same as yours. That doesn’t make those opinions any less valid than your own.

What spurred this? On social media today there has been a flurry of things that bring out opinions. Vaccinations. ISIS. Religion. I have opinions too, but apparently some of the people who read my comments feel I’m way off base.

Seriously. Just try respect. You may learn something along the way.

Lens

I had a revelation recently. Shocking, I know. Sometimes we get so wrapped up in our own stuff that we forget all the things going on around us. We see everything through the smudged lens of our personal experience.

For me, it came with a hospitalization a few weeks ago. I returned to work and when asked how I spent the holiday weekend, I replied “in the hospital.” Responses varied from “oh my gosh!” to “what are you doing at work?” The whole time I was thinking “so what?”

You need to understand that I spend a lot of time both at doctor’s appointments and in the hospital. This week, I had 5 appointments. I average 2-3 every week. It’s my life now. I don’t even give it a second thought. When I was asked what I was doing on my day off, I replied “going to 4 doctor’s appointments.” The conversation stopped.

I now realize that my normal is not even close to “normal.” For most people, my life sounds like a major health crisis. It is. However, I don’t live like it is any different from “normal” because this is my normal. My lens doesn’t magnify my health because I choose to focus on other aspects of my life. Does this mean I’m not ill? Nope. Just that I’ve accepted where I’m at and kept moving forward.

Your challenge: Think about how you look at things. Is that drama really as dramatic to everyone else? I’m reminded of people in my past who reacted to events like the apocalypse had happened. I think about people in my life now who are wringing their hands over flat tires while I’m learning that I may have a ninth “rare disorder” that may very well change my entire life from the ground up. Keep things in perspective. Keep your lens aperture open wide.

Snark

Here it is. Yes, this is snarky, so stop reading right now if you are feeling offended.

I communicate with many people each day via this little blog, social media, the workplace, texts and phone calls. I follow a number of social media pages and Twitter accounts. The beauty of the Internet is the equality it offers. Anyone can open an account and post away.

Yeah. Anyone. About anything. It’s no secret that I’m involved in Autism Awareness. This area is probably the one that gets me riled up the most. People come onto pages and ask questions like “my 11 yo son won’t get up and go to school. Is this Autism?” Or, “I think my 8 month old baby has high functioning Autism because she doesn’t sleep through the night.” How about “do Autistics prefer to wear blue clothes?” A personal favorite…”how do I get my 20 yo son to stop playing video games?”

Seriously…learn about the disorder before you post. Many 11 yo boys don’t want to go to school. Babies have unusual sleep patterns. Autistics are like everyone else when it comes to preferences. And, may I suggest parenting the 20 yo son?  That is frequently seen as being cold, just so you know. If you’re supporting the kid, you do still have a say in what their life looks like. Want to check out that theory? Tell the kid they have two weeks to get it together or they will be supporting themselves. Miraculous things happen when boundaries are set.

Yes, yes. These are my opinions. I am past the point of being amused by people who think social media is a triage room. One person came on a diabetes support page and asked if insulin was really necessary to stay alive. In case you didn’t know, the answer is yes. Bodies make insulin as part of keeping things balanced. You need it to survive.

How about this gem…”I think I have gastroparesis because my stomach rumbles a lot.” Ok, well, gastroparesis is a condition many know nothing about. However, if your stomach is rumbling, it’s moving. Gastroparesis literally means paralyzed stomach. You take it from there.

I could go on rambling, but I’m hoping you get the idea.

So, the challenge. I grew up with the saying “open mouth, insert foot.” Given our unprecedented access to information, there is no reason to ask the types of questions listed above. If it’s medical, ask your care team, Social media is not the place to get medical information. If it’s an Autism question, there are many, many resources available that can provide better answers than a social media page. Oh, and before you post that question? Ask yourself why. What is it that leads you to believe that x is related to y? You might just discover that your perceptions need adjusting.