Chronic pain is so often misunderstood, as are the people suffering from it. It’s usually not something other people can see, so it’s easy to dismiss. If you see someone with a cast on their leg, you can visually identify their pain (broken leg = “that must have hurt”). However, if you see someone, walking around, driving, sitting with you at dinner, trying to put her pain in the back of her mind so she can lead a normal life, you’re more likely to think “she can’t be in that much pain.”
Today was a bad day for me. The pain reached an 8 or 9 on the “How is your pain on a scale of 1 to 10? 1 being no pain at all, 10 being ‘I need to go to the hospital'” (Yes, I’ve been asked that so many times by pain doctors, I have it memorized). Today, the pain was debilitating, distracting and annoying, with little relief all day. Driving home, I couldn’t sit still, I screamed at no one in particular and even cried because the pain grew so intense. I momentarily considered that driving off a cliff would be preferable to suffering this pain one moment longer. And, no, I’m not suicidal. It’s a feeling that you’d understand if you had chronic pain. The difference is in the fact that you have hope that the pain will be better tomorrow. After reading that, if you know me at all, you’re probably thinking I hide it well. You’re right, I do. I’m pretty sure only one or two people have ever seen me break down (screaming, crying, throwing things, not making any sense). It actually usually happens when I’m alone in the car… I try to hold off long enough to get away from other people.
So, what exactly is wrong with me? I “look OK” (which, by the way, is the WORST thing you can say to someone with an invisible injury i.e. chronic pain, brain injury, etc.). Well, I was in a car accident five and half years ago that caused many injuries that you can’t see (including a brain injury): 5 herniated and/or ruptured disks in my mid-back and neck, which have developed into accelerated Degenerative Disk Disease, usually causing sharp, nauseating pain, and, at other times, dull, aching pain; myofacial pain across the entire lower (lumbar) and pelvic (upper butt area) region of my back, which is incredibly painful if I sit wrong or if touched (I literally yelled out during a yoga class when the instructor pressed down in this area of my back while attempting to help me deepen my child’s pose); constant chronic muscle spasms, which are stabbing, nauseating and aching, and sometimes make it difficult to breathe (fortunately massage therapy can really help this aspect of the pain; unfortunately, it is too expensive to keep up with); occasional phantom pain from fractured bones in my transverse process (bones that extend out from the spine); a labral tear in the cartilage of my right hip, which, although it’s as healed as it will ever be, still causes pain, sometimes in both hips, because it forces me to walk unevenly; and the beginnings of arthritis in my spine (which is exactly how your grandparents describe it and really is horribly affected by the weather). Oh, did I mention I’m only 28, not 80, which is usually how I feel.
I’m not writing this to complain, but to explain. In my experience, not only is there a lack of understanding, but there is a lack of desire to understand chronic pain. Can you imagine having something that relentlessly holds you back from the things you love to do, that exhausts you quickly, that infuriates you, robs you of your patience, and in my case, your dreams (Peace Corps after college)? And, then, on top of that, you have to take medication for it, which gives you relief, but causes it’s own problems. I’m still trying to figure out what to do instead of going to the Peace Corps after college, and college ended four years ago…
Pain is alienating and makes you feel so alone. Some days, my cat is literally the only thing that can make me smile (he’s an adorable and hilarious chunk of a black cat, if you were wondering). Months ago, I went to a support group for pain, because I wanted to make connections with people who understood. I never went back, because I’m fairly certain suffering from intense chronic pain over the years had driven half of them crazy. I don’t want to end up alone and crazy because of chronic pain, talking about my how my cat makes me smile at a support group when I’m 50.
I’ve learned that there is an odd fine line between complaining and explaining when it comes to traumas. In the past, I have worried so much that people will tire of hearing me talk about it that I didn’t share important pieces of information about what I was going through. It not only made me more depressed, but it cost me some of the most important relationships in my life, just because of misunderstanding and my own insecurities. I honestly still couldn’t tell you where the line is five years later, so I am going to err on the side of over-sharing from now on. Keeping it to myself hasn’t exactly worked out for me. I still worry that people in my life are sick of hearing me complain (which I really try not to do, but I’m sure that it bleeds through), but you know what? I’ve been through a lot in the last five a half years, trying to get rid of the pain, mostly unsuccessfully, some incredibly painfully (i.e. multiple epidurals), so if you think I complain a lot, at least I’m not one of those people who just complains but doesn’t do anything about it.
I am not the same person I was before the accident in so many ways, but the chronic pain seems to hang on me the heaviest. Pain is exhausting. It sucks your the life out of you and leaves nothing left. It affects your mood and your patience level. Personally, I’d never wish the pain I feel on a consistent basis on my worst enemy (you know who you are), but when I see doubt or skepticism in a someone’s eyes, I wish I could touch their arm and transfer it to them for a few seconds, so they would understand that I’m not making it up or exaggerating. I notice the judgement in people’s eyes when I reach for the pain medication from my colorful Coach pill case (my attempt to make it somehow slightly more pleasant). I guess if you’re going to judge me for being on pain medication, you really haven’t tried to understand me and therefore, aren’t really my friend, so I shouldn’t worry about it. However, for your information, I’ve tried going off of pain medications altogether twice. Both were unpleasant experiences and caused the pain to flare to unprecedented levels.
I honestly don’t think I’ve ever let anyone into the dark little corner in my life that is chronic pain. It’s always been easier to plaster a smile on my face and keep it hidden. When did I become this person? The person who just drowns in the pain and lets it become an excuse to keep people out, because “no one will understand.” Being honest with myself, I never gave anyone a chance to understand. Chronic pain is a big part of my life, but, regardless of how bad it gets and how much it affects my personality, it isn’t who I am (although it feels like it sometimes). And, maybe I’m correct that no one will ever understand, but that can’t be my reason to give up. It’s a lonely future for anyone who thinks that way… A future of bitterness, cats and crazy support groups. Although, I do love cats.
Note: Like I said, today is definitely a bad day for me pain-wise, so, this may not be most well-written post. I’m not even sure that the ideas are organized logically, but I don’t really give a shit today. So, I apologize. I am not always going to go on and on about my chronic pain in this blog, but I do have more to say on the topic and I am completely willing to answer any questions if you ever have any.