When I began to write this I was crying…I was crying out of frustration, which has been a more frequent activity the last three/four years than any other time-period in my life, stemming of course from significant decreases in overall health. Over the last few years I’ve cried due to mourning my old self while simultaneously resisting who I ultimately became; My biggest fear was always that I would become a full-time patient and damn if it didn’t become a reality. I’ve cried over being mistreated by doctors, nurses, secretaries, pharmacists, pharmacy aid’s, radiology technicians, hospital administrators, insurance companies & Social Security, Medicare, and prescription benefits employees. I’ve cried over both personal and medical debt collectors harassing me while trying to squeeze blood from a stone. I’ve cried over the effects my condition(s) & the numerous negative side-effects which have impacted my personal life, my professional life, social plans, my family and my friends. But today I cry about people not doing their jobs; People who don’t follow through on the things they said they would and people who give incorrect information to my detriment without regard. This week has been full of such people and I’m finally breaking down over it. I have found that no one is accountable to me as a chronic pain patient (yet, I remain accountable to others) and it makes me feel so insignificant.
I’m crying over the lack of control I have over my entire situation and how my medication, my money, my debt, my health choices, are always in someone else hands. I can empathize with people who steal because they have no way of getting out of the situation they’re in without it. I can empathize with people who buy drugs illegally because they have no other way of getting them. I can empathize with people who scream & swear at customer service representatives who tell them there’s nothing they can do. I don’t endorse any of those actions, and granted some are more severe than others, but I what I’m trying to say is that I can emotionally understand these choices because I can relate to feeling desperate. It’s a desperate feeling when you are on a medication you can’t come off without extremely negative consequences and someone tells you it will either cost you $1K or you’ll have to go without. It’s a desperate feeling when a company takes money out of your bank account via an irreversible mistake after you’ve planned how every dollar will be spent and the mistake causes you to not be able to buy groceries. It’s a desperate feeling when you are overwhelmed with medical debt but find you’re not qualified for financial aid because an employee waited too long to process your request and a critical deadline was missed. It’s a desperate feeling when you miss important plans/appointments you committed to because you can’t even get out of bed due to pain or fatigue (or both). It’s a desperate feeling to have to give up work you find deeply rewarding because you can no longer perform the simplest of tasks. It’s a desperate feeling to feel controlled by a person, a company, or the government.
There’s a lot of despair that goes into chronic pain/illness and there’s a reason depression & pain frequently go hand in hand. I believe it’s possible to manage depression and still be in pain. In fact, it’s something I do every day; It’s just that some days it’s harder to manage than others. Today is one of those “harder” days. However, it’s important for me to note that I realize although I’m having a hard week, I will get through it. I’ll wipe my tears away, put on some music or do some yoga (whatever I find comforting) and I’ll put this week behind me. What other choice do I have? I could stay in a place of despair, but that doesn’t serve anyone. To be clear, I believe it’s perfectly ok to recognize the cause of my suffering and emotional pain. It is staying in the suffering that causes long-term damage. Sometimes it’s not a choice for people, to stay in the suffering or to get out of it. Sometimes it takes medication and doctors and significant cognitive behavioral therapy. That is not the case for me right now and I think it’s important for me to make that distinction, so please take my words with a grain of salt. I don’t believe all depression can be fixed with music or yoga, but for me, those are usually good places to start when trying to climb out of the figurative hole I’ve gotten into. Talking or writing about what’s wrong also helps; Writing this right now is helping me gain some perspective on my situation which makes me feel less depressed already.
I think the issue we face as individuals with chronic pain/illness is that we’re already hammered everyday by our conditions. We’re hammered with facing substantial difficulties for weeks at a time, often months or years; That takes quite a toll on us. It is easier to deal with a bad week than it is to deal with consecutive bad years. Complications become exhausting on a level almost impossible to understand unless you’ve been through it firsthand. Consistently losing battles makes the fighting even more taxing and that’s why it’s so important not to stay stuck in the suffering for longer than necessary. I’ve found that finding ways to provide myself a break emotionally, so that it isn’t just one bad thing after another, is important for my overall health and mental sanity. So tonight, I will take care of myself. I will practice some yoga, perhaps take a bath, and listen to some music. The battles will be waiting for me when I’m ready to return to them, but for now, some peace is needed and I’ve learned over time how to create that for myself.
Wishing you peace when you need it most.
Sending positive vibes,