My life took a drastic turn when I got sick. My body went from a brilliant tool I used to navigate the world to a prison. This has completely altered how I view and respond to people around me, and of course, how they respond to me. So, let’s go to a party together and you can hear the voices in my head.
All day I have been psyching myself up for tonight. Yeah, it is just a small get together with a few friends and acquaintances, but these days any sort of social interaction is so much more than some fun. I’m prepared, I was particularly careful with my meds so I could drive in total safety. Not to mention avoiding the side effects of said meds such as falling asleep in awkward places, and non-stop blonde moments. In doing so, my pain is a little higher, but it’s a necessity if I hope to survive the night.
I walk through the door and take in the scene, a little music in the background, lots of food everywhere, and people are separated into small groups, chatting away. A friend gives me a hug and inevitably follows it with “how are you?” First off, this question just kills me. I am fully aware that in our culture this is a greeting more than a question, but for me, it’s not even something I want to think about. Plus, I don’t have a socially acceptable answer. At least, as far as I’m concerned, I don’t. Instead, I feel cornered into pretty much lying with an “I’m ok,” or “I’m good.” That way we can all move on with our night and avoid starting out on an unpleasant note. I don’t expect our culture to suddenly find a new greeting because the current one makes me grumpy. That is wishful thinking. I suspect I just need to make my peace with it.
Now that I’ve dodged that age old question I find myself sitting next to someone who actually knows about my health, or lack thereof. I imagine it is natural to be curious, and I’m sure that many of my friends are genuinely concerned. So, they ask me about my latest adventures in the medical world. I’ll answer questions in facts and research, but I’m the last guy to get into an “I’m worse off than you” debate with anyone. Why, because I want to be the guy winning the health award in the room, not the other way around. When it comes to my personal experience of illness I will avoid it or underplay it, especially in groups. I’ve tried the honesty and even after I drop the mood of the group ten notches what I encounter most often is a lack of comprehension. After that, even worse, I get advice.
Now I’m not saying that more information isn’t a good thing, but everyone assumes that I haven’t tried, well, anything. They offer the alternatives to medication, like meditation, relaxation, supplements, or my personal favorite; less stress. Sure, never thought of that, I’ll get right on it. Some suggest “new meds” that I tried about five years ago and they did nothing. Others suggest exercises or machines that have worked wonders for them, so I should definitely do them. They don’t understand that my body is so very different from theirs that their correlation doesn’t apply. I’m not being a jerk here either, chronic pain and illness actually physically alters both your body and your brain (a whole other post in itself). It seems that on some level everyone has a suggestion, but the problem is they aren’t living in my body. They haven’t been along for the seven years of trying everything, and I mean everything from the latest in medical break throughs to the hippie dippiest methods available, no luck. I’m aware that their intentions are good, but I find in giving advice people make a lot of assumptions and some of those assumptions can be hurtful or offensive.
If it isn’t advice, a lot of times the alternative is platitudes. I don’t think anyone wants to hear them in any situation. They are the words we speak to fill the silence, when really, we just don’t know what else to say. They don’t do any good, in fact, they do damage. No one wants their troubles dismissed and saying things like, “It will get better,” or “life is like that,” is doing just that. Believe me, silence is superior.
I adore my friends and family and I understand their concern, but when I make the monumental effort to go out and have a social life the goal is to get away from that side of my life. I want a few hours of normalcy. Even though I still have to manage my pain, balance my meds, my exhaustion, my mood, and my level of brain power. I really like to pretend otherwise. One of the things that keeps me going are those small moments when I actually forget my body.
I recognize that unless you have experienced chronic pain you won’t truly understand the experience. Yes, everyone has experienced pain, but chronic pain is a totally different beast. It has mental and physical repercussions that even someone living them has a hard time wrapping their head around. It doesn’t make sense unless you’re a neuroscientist who specializes in pain. Yes, they do exist. They are the ones who made sense of all the craziness caused by chronic pain.
While you may not be able to understand, what you can do is sympathize. You can be kind and forgiving of my physical limitations and my moods. You can help by offering the simple things. I struggle with the basics, keeping the house clean, taking care of myself, and especially feeding myself. I can’t count how many times I have opted to skip eating because making something or even getting to the kitchen was just too much. Cook me some food, help me run an errand, help me keep track of my doctors appointments, help pick up the house. They seem like small things, but to me they are monumental tasks that weigh on me because I know they must be done, but I can’t manage to do so.
In the mean time, distraction is a great technique. If I’m being social, I’m always excited to hear about life outside of my own. I’m also happy just to enjoy the company. You don’t need to help me, or fix me, just be a part of the few hours that I can put everything else away. Some company, some laughter, a connection, this is why I fight so hard and just the slightest taste is enough to keep me going. No effort required, just be you.
What is your life like with chronic pain? What advice would you give your friends?