“Be kind to people and don’t judge, for you do not know what demons they carry and what battles they are fighting.”
― Vashti Quiroz-Vega
I’ve had some pretty high pain levels over the last week. I do not share this because I am seeking pity, sympathy, or empathy. It is what it is. I am fortunate to have a supportive, loving spouse and supportive, loving friends, many of whom fight the same daily battles that I fight. I am fortunate to have developed coping skills over the last 11 years to help get me through rough days and weeks. Weeks like last week, when getting the kitchen clean was a major accomplishment. Weeks like last week, when it felt that no matter what I did, I could not escape the pain. Weeks like last week, when I knew my ‘to do’ list was exceptionally long, and yet, it felt as if I just could not make a significant dent in it, no matter how hard I tried. This morning, I awoke to a filthy dirty kitchen, and had to wonder to myself, ‘How did THAT happen? This kitchen was spotless two days ago!” Pain, my friends, is what happened. Pain is very tiring.
But the worst of it for me, by far, are the emotional consequences of living in pain. Physical pain is hard, but emotional pain is harder. There is no pill you can take to escape emotional pain. For example: having to tell a friend, “I’m sorry, but I just can’t make it to dinner,” when I was the one who scheduled dinner in the first place. Cancelling on my trainer because I don’t feel well enough to drive
into town by myself to exercise, even though I know the exercise will help me (oh, the irony!), simply because I feel that my mind is not sharp enough to concentrate on driving safely. Wondering how my body will cope when my husband and I have kids. Wondering if I will ever gain enough control over this pain to teach full-time again without calling out sick once a week. Dealing with thoughtless and careless comments, like “If you just did _____, you’d feel SO much better!” And, “Oh, if you’re still eating Rice a Roni, you’ll never get any better!” (Yes, someone actually said that to me last week.) Or, my personal favorite, the condescending looks that I feel I am receiving when my gait is unsteady because of a muscle spasm in my knee or hip while walking, and a disparaging comment from someone else that follows the spasm.
At times, I feel like saying, “Oh, really? Is THAT the magical cure that I’ve been missing for all these years? And to think, none of my doctors have ever thought to mention that to me! I’ll have to pass that along to my medical team, so tell me, which study and publication gave you that information? I’d love to look up the original research on PubMed.” I know that this semi-sarcastic response is really not going to help anyone, but I can’t help but think how great it would feel in that moment. Pop-culture does not equal medicine.
These comments hurt because I did not choose this life. Because I never prayed to God for a life filled with internal conflict with myself, external conflict with the world, physical pain, emotional isolation, and feeling as if others are looking down on me for ‘not working hard enough.’ If you truly believe this is a path that any person would choose, you must have some serious emotional baggage of your own. I cannot come to any other conclusions than that. Nobody chooses this life. It simply happens. And it can happen to ANYONE.
I was 18 years old, and the healthiest I’d ever been when I got sick. In a matter of three weeks, I went from doing 160lb leg presses regularly (I weighed 130lbs at the time), and running a 5K every week to having to sit and rest during a 1/4 mile walk on a gentle incline from my dorm room to the dining hall. Why did I have to sit and rest? Because I was so winded that I felt as if I was going to pass out, right there on the sidewalk. That kind of deterioration does not just happen to healthy people. Later, we discovered, my blood pressure was plummeting (sometimes to as low as 80/40, while my heart rate was at a high 130), sometimes after only mild exertion. Medications that “should help,” (my doctor’s words) granted me the gift of 50+ extra pounds to carry around, which only made the pain worse. This completely off-set any benefits I had been receiving from those medications. I’ve managed to lose some of that weight, but some of it just does not seem to want to go anywhere, no matter what I try. I have not given up on trying to drop this extra weight, but I have accepted it for what it is. My story, sadly, is not unique.
I know that when I am in pain, thoughtless comments affect me more. It feels as though the coping mechanisms I have worked so hard to build up over these last 11 years are suddenly not available when I am in pain, while I am still expected to meet functional and social obligations during these periods. The reason for this might be explained by a study performed at Harvard in 2012 using fMRI scans showed that Fibromyalgia patients express fewer neural connections within the brain to the amygdala, hippocampus, and the brain stems during pain episodes as compared to healthy controls.
Patients with FM displayed less connectivity within the brain’s pain inhibitory network during calibrated pressure pain, compared to healthy controls. The present study provides brain-imaging evidence on how brain regions involved in homeostatic control of pain are less connected in FM patients. It is possible that the dysfunction of the descending pain modulatory network plays an important role in maintenance of FM pain and our results may translate into clinical implications by using the functional connectivity of the pain modulatory network as an objective measure of pain dysregulation.
In other words, pain signals can actually block normal homeostasis in Fibromyalgia patients. It’s little wonder that pain also makes us forget all of the coping skills we’ve worked hard to master, even if it is only temporary. It’s little wonder that we try to “make up” for less productive days when we feel better, which sometimes sends us into a rebound flare. And, it’s little wonder that some of us have more digestive problems when our pain levels are higher, whether that is the result of taking more pain medications (which tend to cause constipation), or just a result of the pain pathways affecting homeostasis (digestion). This may also explain why Fibromyalgia patients are more irritable during high pain episodes, and why we have a harder time coping with stress in general; both are processed in part by the amygdala.
Most Fibromyalgia patients are experts in hiding their pain. It is a social taboo to talk about it extensively. Many pain patients are concerned about losing their jobs, housing, and sometimes even insurance or doctors if they talk about their pain or how it affects their lives too much. Or if they ask for “too many” work accommodations (for some people, this means even asking for ONE accommodation), even if the accommodations are truly necessary. Eventually, we all hit a point when we cannot hide it anymore. That may only last a day, a week, or a month- or it may be a permanent change. I think this homeostatic dysfunction plays a role in this phenomenon. When you are struggling to regulate your digestive tract, or to not think about how you’d really love to amputate your right arm because it hurts so G-damn fucking much at that moment, filtering your thoughts during a conversation sometimes just does not feel as important as it once did.
Many patients do not talk about their pain because of the kinds of insensitive comments I experienced this week. It is difficult to talk about pain. The problem is that when we do not talk about our pain, it’s easier for society to pretend that it’s not there. It’s easier for us to pretend it’s not there. We become even more isolated. When we don’t talk about these tough issues, we don’t see legislative changes like the Americans with Disabilities Act and Affordable Care Act, which help prevent disability-related discrimination. We don’t see the development of new research (like the study above), that may eventually help to develop more effective treatments.
While it helps to know what’s going on in my body during these high pain weeks, careless comments still sting. I think that they probably always will. This is where the benefits of a support group can help; we have all heard these careless comments, and we have all heard them when we’re in a lot of pain. Sharing the insensitive comment with a support group can be cathartic. Just hearing from other pain patients that the comment truly was insensitive and offensive, helps. Knowing that you’re not the only person fighting these internal and external battles, helps. None of us are truly alone.
If you are having trouble coping with a pain disorder, find a support group. Reach out. Talk to other patients. Find someone in your life who will simply listen to you vent- and maybe even give you a hug when you’re done. Talk to your doctor about the way you are feeling; it’s possible that a few weeks or months of talk therapy might help you develop more coping skills and it might even help you to come to terms with your illness. When your burden becomes too heavy, let someone else help you carry it for a while. You are not alone, and you are NOT your illness.