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.