Tag Archives: chroic illness

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.