The Iceberg of Agony: When Your Struggles With Chronic Pain Are Largely Invisible

“If we could read the secret history of our enemies, we should find in each man’s life, sorrow and suffering enough to disarm all hostility.” – Henry Wadsworth Longfellow

This quote may strike a chord of empathy within our community of chronic pain pals. And if our suffering itself isn’t bad enough, what can be said about the fact that there are those who don’t believe our pain really exists? What if there aren’t any results on our X-rays, blood tests or MRIs showing a pain-causing source? What then? Is the pain all in our heads? Are we just verbally listing off ills for the sake of pills? Although there were a handful of issues found on my MRIs that were “fixed” during surgery, the pain still persists years later.

Copays, long lists of various medications, surgeries, injections, nerve burns, significant weight loss, blood tests, urine tests, IVs, topical rubs, allergy/elimination diets, essential oils (to name only a few things I’ve tried) have been ridiculously more expensive than street drugs and a lot more hassle, too. So if I were just in it for the pain meds, wouldn’t it be a lot easier for me to just hit the streets if I were looking for a fix?

I’ve had many doctors and even some family members and friends raise a proverbial eyebrow at me and I have sensed their underlying lack of belief that my pain exists. And if it does, is it really that bad? Yes. It is. So, if nothing is manifesting on all of these advanced and extensive tests, everything must be fine then, right? What I’ve come up with is this: Just because the current advances in medicine haven’t uncovered the reasons for my chronic suffering (or that of a few of my friends who also have chronic pain), it doesn’t mean there aren’t any reasons. Science just hasn’t advanced enough to uncover those reasons.

Currently, I have seen 14 different doctors in varying medical fields and levels of expertise and I have been subjected to every test and type of medicine or herb that each medical professional could think to administer. Most of the medicines did nothing for my chronically aching hands, forearms, lower back, feet, hips and knees, to say nothing of those days when my skin feels like it has been sandpapered. Yet some of the medicines I have tried have put me into varying degrees of hell, while others had me hoping for hell, knowing it would have been much less excruciating and torturous than what the current drug was putting my mind and/or body through. They don’t call it “practicing medicine” for nothing.

Some people have commented to me that I look like the epitome of health. Perhaps I do, but I certainly don’t feel like it. Far from it, in fact. I also have low T3 and T4 levels (thyroid issues) which make the simple task of getting ready for the day very draining. By the time I have showered, gotten dressed, applied my makeup, then dried and styled my hair, I am also ready for a nap (the spoon theory by Christine Miserandino).

I can easily detect the underlying skepticism when people ask about my outdoor activities with regards to my chronic pain and health issues. I get it. I “look” healthy and I get outside as often as possible, engaging in activities that my body can tolerate. When I do, I like to post pictures for my family and friends to see on social media. Subsequently, this has led to some questions about the legitimacy of my health situation. I enjoy getting outside, I feel like it is a great way for me to blow off some steam as well as obtain that boost in endorphins that can be achieved in the great outdoors. I can only stay cooped up inside my house for so long before my mental health and morale start to nosedive.

That said, I always pay the physical price for my recreational activities during and/or soon afterward. Physical activities always cause my pain to escalate tremendously. But there is a trade-off in there somewhere between maintaining mental health and putting up with proliferating pain. And I smile for pictures. But it isn’t because I feel good. I don’t feel good. I hurt. all. the. time. And I have nausea, stiffness and exhaustion as frequent flyers and unwanted baggage on my pain plane. There is so much that I hide behind my smile. So much pain lurking beneath the cold, dark and lonely surface of the crushing, colossal iceberg of my agony.

I happened across a quote by Friedrich Nietzsche that really resonated with me and put into words so perfectly an idea I have wanted to verbalize for a long time. “What really raises one’s indignation against suffering is not suffering intrinsically, but the senselessness of suffering.” For a potential mother, the pains and nausea of pregnancy and labor yield a new baby. For athletes, grueling exercises chisel a body, win competitions, prized medals and the glory of being a champion. But what’s the point of the bane and strain of chronic, unrelenting pain?

If you do know someone with chronic pain, even if you don’t really understand them or their situation, try to be understanding. My doctors don’t understand even though they went to medical school. I don’t even understand why some days I have more pain than others or why I get those nasty pain flares out of the blue. There are people I have talked to with chronic pain who don’t understand it, either. I am baffled why some days I can manage the pain because it is relatively mild, and other days that I hurt so badly that I feel like I am going to die and I’m afraid I won’t. I limp some days more than others because of that. People probably wonder about that, too. Or the longer I sit, the more stiff and enflamed my hips and knees become, but if I can walk around for a few minutes, my joints will tend to loosen up a bit. However, if I walk for too long, then my pain escalates again.

When people see pictures of me zip lining, hiking or at the pool with my husband and two sons, they wonder. And it’s fair for them to ask. However, I choose to keep on living instead of being cooped up, because I still can. Others who have chronic pain may not be so fortunate. May I suggest, as I have heard before, that we assume the best and doubt the worst in others and just offer to help out where we can. Life is hard enough without harsh and needless judgments from others. We all have our reasons for things. There is a lot more to others than meets the eye, and looks can be deceiving. There is so much beneath the tip of the iceberg that we don’t see. Most people don’t watch me as I crumple in a heap gasping for breath when my pain is at its peak and before my pain meds kick in – particularly first thing in the morning. They don’t see the inflammation that throbs through my joints. I may smile, but on the inside I am often gritting my teeth in agony and raging for relief. Give people the benefit of the doubt, because chances are, you are only seeing the tip of the iceberg of their agony.