The Truths About My Chronic Pain Journey

Note: some writing in this story is flippant, deliberately so. All of us spoonies know that sometimes, if we don’t laugh, we’ll cry.

There is an old adage: “When you hear hoof beats, look for horses.” It’s an adage followed particularly by those in the medical profession. It’s also an expression that has been passed down for a good reason. Most of the time, symptoms from things like an earache, sports-related injury or the common cold have an obvious cause and clear resolution.

However, what if you’re complex and don’t fit into most doctors’ check boxes? What if your disease is one that was covered for a half a day or so in medical school, because it’s not terribly well known, and the professors are sure the trainee doctors are “never going to see someone in their practice with [insert disease] anyways”? What if you have symptoms from more than one condition? What if you’re a zebra?

After being diagnosed with Ehlers-Danlos syndrome – hypermobility type, endometriosis, myofacial pain syndrome, and fibromyalgia, I am a certified zebra.

In my chronic pain journey, I’ve had to learn many truths. Some of those truths are comforting, some are unsettling and some are painful. One comforting truth is that a “syndrome” is nothing to be afraid of. It’s just a word. It means “a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms.” That’s it. It can sound frightening and confusing, however, saying the word “syndrome” does not need to be accompanied by dramatic music like in cheesy B-rated horror movies. No offense of course to those of you who love cheesy B-rated horror movies.

Some truths are more uncomfortable. Truths like the fact that I have chronic conditions that will not go away. There is no magic pill, potion, diet, exercise regimen, ritual, amount of positive thinking, supplement, or alternative healer like a naturopath, acupuncturist, or leader of any organized religion that will cure my diseases. If they help you with your issues, that’s great; however, my truth is, there are techniques, medication and devices I use to manage my pain and joint laxity, but there is no cure for me right now. Period.

 

Another slightly more uncomfortable and sometimes annoying, but related, truth is that well-meaning people may try to “cure” me. No, I don’t want to buy your latest miracle supplement/miracle drink/miracle shake/miracle cleanse, essential oil or general snake oil remedy. Thank you anyway, now quit spamming me on Facebook with your sales pitches, dammit. Yes, I’m quite certain I don’t want to see your Reiki healer. Or your priest. But thanks for thinking of me. Yes, I’ve tried meat-free, dairy-free, gluten-free, everything that makes food worth eating free (for me anyways) diets. No, it didn’t help. Yes, I have a medical team that has my complexities handled, but thank you. Finally, yes, I’m quite sure Ehlers-Danlos syndrome is caused by something embedded into my DNA, causing the collagen in my body to be weak and my joints to either partially or fully dislocate, and is really not caused by gluten. If you pointed out that I’ve tried gluten-free, thank you for paying attention. If I could be assured of an unconditional cure by slathering myself in coconut oil, dancing naked under a full moon in midwinter and sacrificing gluten to the pain gods while chugging a miracle shake, you’d better bet your boots I’d be the first in line to try it. Unfortunately, it doesn’t work that way. I know the well-meaning people are not trying to be malicious; they are trying to help.

*Some people find using alternative therapies either by themselves or as a compliment to other prescribed therapies work, and that’s fantastic. Unfortunately I have found very, very limited success thus far — and that’s OK, too.

One of the hardest truths for me to deal with is the fact that sometimes, I need help. I am that girl. The one who will dislocate my fingers trying to open the pickle jar because I can do it myself. The one who will injure a shoulder trying to take my shirt off, because I can do it myself. The one who will absolutely insist upon walking alone down the icy steps in the winter, because you guessed it, I don’t need any stinking help (and then I promptly blame the stairs when I inevitably fall). The one who will accept help, grudgingly and often gracelessly, after trying desperately to do something, failing miserably, and usually hurting myself in the process.

I am trying to learn how to accept help, and accepting that help a little more gracefully, but it is quite honestly a challenge for me. My husband likens me to a toddler having a temper tantrum, because they want to do every freaking thing themselves, and will unequivocally, loudly, and belligerently refuse any and all help. The hardest thing to accept is, I’m not entirely sure he’s wrong. Don’t tell him I said that.

Yet another, downright painful truth for those of us who “don’t look sick” is that some people, including doctors, won’t believe us. They’ll accuse us of seeking attention, being a hypochondriac, being melodramatic, or worst of all, accuse us of being drug seekers. Amid the (very real, very dangerous) opioid epidemic gripping North America, we are accused more and more frequently of being drug seekers, and are often denied treatments that allow us to live in a diminished amount of pain. This is painful and exhausting physically, mentally, and emotionally. The reality is, except for some braces, splints, and interesting scars, my conditions don’t have outward signs. There is not a neon sign with blinking letters spelling out “OUCH THIS HURTS” growing out of my head. It’s OK if some people don’t believe us; they just may not have a good grasp of science. It’s also OK to limit or sever contact with those people.

Those of us who have ridden in this chronic pain rodeo for a while now know it’s not just OK, but actively encouraged to advocate for ourselves with medical professionals. It is perfectly acceptable to push to be taken seriously. Push to be seen. Push to be not only heard, but listened to. We’re not wasting time, causing a fuss, putting people out, or being a general nuisance. We are making sure we are heard, validated as someone with unique needs, and treated for our conditions. We all have a right to be treated as a human being, dammit. No one deserves to live in pain. I am extremely fortunate to have a compassionate, knowledgeable medical team in my corner. It took me a long time, and ruthless advocacy for myself to get to that point. When I reached the age where I was solely in charge of my own healthcare, my mother told me to “stand up and be recognized”; that if I didn’t advocate for myself, no one was going to stand up and do it for me. This turned out to be one of the most valuable pieces of advice I was ever given.

There is one truth that is by far more unsettling than the rest, though. The truth is, there is an emotion far more painful for me than fear or dejection. That emotion is hope. Every time I try a new treatment, every time I have a really, really good day where my pain is a 4 or 5, every time I succeed in doing things like picking up my 2-year-old nephew, or I get through 24 whole hours with out sublaxing a hip, a little kernel of hope blooms. Hope that I can continue to pick my nephew up and play with him without him wondering why “TeeTee” can’t pick him up or run (read: limp) around pretending to “get” him today. Hope that this new treatment will be the one that works. Hope that my hip will decide it wants to live in its socket permanently. More often than not, my pain comes back at an 11, my joints fail me, or the new treatments cause side effects so unpleasant that I have to discontinue them.

For those of us chronically ill people, hope can be a disused emotion. Just like developing kinesiophobia after a serious injury, we might shy away from hope because it just hurt too much last time we did it, and we might not think we can take the pain and crushing disappointment again.

Here’s the critical bit, though. Hope is important. It is so important, there is an old Greek myth about it. The myth of Pandora’s Box. It goes that the first woman ever created was Pandora. Pandora was presented a box with all the evils in the world contained inside. When the box was opened, the evils started flooding out. Pandora closed the box, but not in time. All of the evils like death, shame, disease, and regret escaped; only Elpis remained inside. It was said that letting Elpis escape would be catastrophic. The most recognized translation of Elpis into English is Hope. Elpis could never be let out lest the human race “give up hope.”

Oftentimes hope hurts. Sometimes the pain of it slices at me like the jagged shards of my shattered expectations. Hope that remains empty, holding nothing but bits of ruined dreams of new treatments and permanent solutions, can cause us to be dejected, and miserable, hostile and lash out at the ones we love. Hope can cause us to have a thousand wounds and not spill a drop of blood. Conversely, the remains of shattered hopes and unfulfilled expectations teach us true compassion. Hope, however painful it can be, drives us on. It drives us to better understand chronic conditions — including chronic conditions that don’t limit our ability to remain alive but can drastically affect the quality of our lives. Hope drives us to research and fundraise, to develop new potential treatments, and to educate people. Hope drives us to get out of bed in the morning, even though it can be exhausting and painful. It drives us to dream and to reach for the stars.

Yes. Hope can hurt, but if we keep it clutched tight enough, even when it hurts, maybe, just maybe, one day there will be a cure for us.

For now, I’ll just keep limping along, with splints on my joints, the pain firmly hidden behind the smile on my face, and hope in my heart.

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Thinkstock image by tseybold