A guest post from my amazing wife, a marriage and family therapist who happens to deal with chronic pain:
Chronic pain is a funny thing. I’ve had it for years, but not many people besides my husband know about it. In the last 6-9 months I’ve finally been working with doctors on it. That seems silly since I’ve had the pain for so long. But it’s hard to know what pain is “normal” or what pain other people do or do not have. So I guess I just went about my business trying to manage my pain on my own. My back pain started when I was sixteen, so I’ve always just assumed I’ve had a “bad back.” I’ve been to the doctor and then physical therapy when the pain has become unbearable. I’ve had three bulging discs since 2012; one cervical in 2012 after being rear-ended and two lumbar in 2018 with no inciting injury. I’ll be getting imaging this week because the doctor thinks I have another bulging cervical disc. It feels different from last time so who knows. My first rheumatologist diagnosed fibromyalgia because that also explained my ongoing intestinal issues. A second rheumatologist (after we moved) said possibly that and rheumatoid arthritis because my inflammation levels are high. My hands don’t look inflamed but my rings feel tight and they hurt when they bend. I’ve cracked my knuckles since elementary school but man does it hurt now. You’d think the pain would make the habit easier to break, so far no luck there. My feet and ankles get super angry if I’m on them too long, and my shoe collection has seriously changed from cute and dainty to as fashionable as it can be while prioritizing comfort.
None of that is particularly useful information. Chronic pain has an awkward place in our world. People know it exists but they expect it to be visible. They expect to see it or know about it. But they definitely don’t know how to actually respond to someone who has it. That’s a large part of why I don’t talk about it much. I hate the pity, which is perhaps my own pride issue. The suggestions get tiresome. Everyone knows someone who tried something that was a miracle cure. That holds true for migraines too, which I’ve also had since I was sixteen. Some people take my speaking about my pain as complaining and wanting them to fix it. Obviously I know they can’t, and I’m definitely not trying to complain. Why though? Why is not complaining so ingrained in us? Constant complaining is tiresome and doesn’t change anything, but should we not be able to voice our struggles? We tell people to be open about their depression. Reach out because people will listen. People have good hearts but also don’t know how to listen to pain and suffering without labeling it complaining. So we’re stuck not wanting to complain or get advice or be pitied. The resulting silence is far less than helpful. When I tell no one about my pain, how do I explain my absence at an event I was looking forward to? Saying “I’m not feeling well” doesn’t seem to cover “my pain is so high that I’m considering going to the ER but don’t want to clog the system when all they’re going to do is give me pain medicine I hesitate to take because of my family’s history with addiction.”
And how can I possibly complain? Given what is going on in our world? Another black man was murdered because of our refusal to deal with systemic racism. I would take on all the pain if it could make a difference for someone else. Let one of those innocent humans live. What right do I have to complain about chronic pain when black people literally live in fear? Fear that I desperately want to comfort and take away. How can I help? What more can I do? What more am I physically capable of doing? I’ve told my clients countless times that we should not compare traumas or pains. There is no cosmic ranking system. But I can’t get past the fact that what the black community in this country has to deal with is far worse than my chronic pain.
To give voice to my pain or not, it’s a trap either way. Then there’s the trap of feeling like our worth is defined by our abilities and contributions. My doctor told me to rest my shoulder by not picking up my 28+lb toddler… so now every diaper change and bath, etc fall on my husband’s plate. My husband who already does the literal heavy lifting and any task that could piss off my back, which isn’t always easy to predict. My angel of a husband reminds me regularly that my worth is not based on physical contribution. We joked many times before we adopted that he would handle the poop and vomit, and I would handle our child’s emotional well-being (the hard part as my husband called it.) Even with such a thoughtful and loving partner, I still fall into the trap. The worry of how my son perceives it. The feeling when I see people in public (well, before quarantine anyway) look on shocked that my husband is doing far more “parenting” than I am.
Then there’s the uncertainty. Why is my pain worse today? Did I do something differently? Did I just sleep wrong? How do I relieve the pain? Stretching helps most of the time, kinda. Heat, ice, CBD hot/cold topical stuff, medicines, delicately changing positions countless times with temporary minimal relief. If there is relief, what caused it? How do I make it happen again?
And yet, there is so much more to my life. Laughter and smiles and joy. It’s easier to show that to the world. I’m not afraid to show emotional pain. We shared our infertility journey on facebook and with our churches. People should never feel isolated in their suffering. <– I should listen to my own advice right? Right. I KNOW that, but doing it is harder. People don’t suspect my pain so it’s awkward when they’re shocked. “But you smile so much.” “You’d never know it to look at you.” Blah, blah, blah. It’s not their fault they’re shocked. It’s my own for not sharing. So why? Why don’t I share? HOW do I share without being bombarded with pity or suggestions or judgement for complaining? Man I wish I knew. Everyone who knows wants to help, but no one can help. I don’t like making my loved ones feel helpless either.
How do I do my job with chronic pain? Whew, I wish I could tell you. Somehow I manage to set it aside for the hour I’m with my clients and put my focus completely on them. Besides that, I space my clients carefully so I’m not setting my body up for failure. My office is seriously comfortable too. Comfortable seating is always more important than fashionable seating.
Wouldn’t the pain be less if I weren’t so overweight? Probably. I’ve been overweight since I was eighteen or nineteen. How much do you think chronic pain helps with that problem? The percentage is below zero. Chronic pain + poly-cystic ovarian syndrome + intestinal issues + migraines = a very complicated weight loss equation. Yoga is the only exercise in my adult life that made me feel strong and that my body responded to. I’ve never changed shape doing cardio, but yoga helped my body. Can I do yoga currently? No because of my shoulder/neck/upper back issue that hopefully we’ll figure out soon. (Isn’t that hope adorable?) The doctor told me I can only add one minute to my workout per week assuming I’ve been able to exercise without resulting pain for a few days. He wanted me to start at 5 minutes on the elliptical. I’m now up to 9 minutes. It’s infuriating. On the high pain days I have to push myself to move at all. On my good days, I’m desperate to exercise longer, but if I do my body will punish me tremendously. Last week I oh-so-foolishly “sprinted” for my last thirty seconds on the elliptical. The next day was excruciating, and to be clear, we are not talking sore muscles. Sore muscles make me feel accomplished, proud of every step when I feel the soreness. This is not that.
And here we are in a pandemic when so many of our coping skills have been put out of our reach. So many of our self care strategies changed abruptly. I would be foolish to assume the stress of social distancing hasn’t made my pain worse. I miss my family and friends. I miss going to restaurants and wandering the grocery store aisles looking for inspiration. We find joy where we can, and we try to cut each other some slack because pretty much everyone is struggling.
So what is the point of all this? Maybe someone will understand a little more what it’s like to live with chronic pain. My dad joked today that my husband should have married a younger woman instead of an old lady like me. We laughed (I really did find it funny and not offensive). Then I hoped elderly people don’t have this much pain. Then I feared what my pain will be like when I’m elderly. Maybe you’ll remember that just because someone seems ok when doing their job or pushing through the pain it doesn’t mean they are. Maybe you’ll remember when someone shares their pain with you to show empathy and ask how you can be supportive. Sometimes I just need to be heard. Sometimes I need a distraction and/or laughter. Sometimes I need grace when I cancel last minute or when I stop answering my calls/texts. It’s not you. It’s me. It’s the pain.
Anyway, things like this are what keep me going on the hard days…