I’ve had it better than some, and I know that I shouldn’t complain, though my grandfather told me once that all pain hurts the same. – Langhorne Slim, Back to the Wild
I know I’ve tried many times to put into words what living with chronic illness is like, and if anyone ever actually reads this blog, they’re probably getting tired of hearing about my pain. But I can bet you’re not as tired of hearing about it as I am tired of living with it … So, here I am, making one more attempt at describing it, and at finding a way of understanding it, even just a little. This has been a particularly bad week, and so as I write, I may come across sounding a little more frustrated or downhearted than I’d like. Right now, I have a massive headache that’s making it a little difficult for me even to figure out where to begin … but I don’t know if I’d really know where to start even on a “good” day.
I think that’s the first thing about my particular “style” of chronic illness that I find particularly harrowing — there’s no understanding it. Though I can pinpoint certain things that cause some reactions, though I feel a little better now and then if I do this or don’t do that, in general I cannot identify what causes my varying yet constant pains from one day to the next. All I know is that it never stops, and it only very rarely lessens.
Pain, give yourself a name, call yourself contrition, avarice, or shame. Giving isn’t easy, and neither is the rain … – Switchfoot, Daisy
It has been given many names, some through concrete diagnosis, some through speculation: scoliosis, raynaud’s phenomenon, fibromyalgia, lyme disease, anxiety, depression, biliary dyskinesia/gallbladder disease, gluten/dairy intolerance, endometriosis, chronic allergies, TMJ disorder, etc., etc. When it come right down to it, I don’t feel like I have at all a clear idea of what exactly is wrong with me. The sypmtoms are so varied, and I honestly haven’t been able to draw any really consistent connections between the symptoms I perceive and the diagnoses I’ve received. I know it’s a combination of some or all of those things, perhaps in company with even other “names” by which it has not yet been called. But at some point all the symptoms just meld together into … well, uhm … a hot mess, haha.
And that is the second thing about my illness that constantly plagues me, though I try not to let it — I like to be flippant about it. Particularly when people ask questions. “How was your week?” “Why don’t you eat gluten and dairy?” “Have you been feeling any better?” I know that people are well-intentioned in asking such questions, and I long to answer them honestly. But I also want them to feel that I’m not offended or hurt by such questions, and I want to be polite and kind. I also know that people deal with things that are far, far worse than anything I have to go through. I don’t want to magnify my illnesses beyond their scope. But with all this in mind, no matter how I answer such questions, I always feel that I am either being dishonest or complaining. If I tell someone how I’m really feeling, I tend to think I’ve somehow cast a damper on their day. I mean, it’s a lot for anyone to try to deal with, and my timidly prideful humanity doesn’t like to cast even a part of my burden on others, who have their own burdens to bear. I fear that they’ll only eventually resent me for it. Or I worry that they may think I’m simply begging for pity or airing my grievances. Perhaps they’d be partially correct — sometimes I do simply want compassion. But I feel guilty for that desire. And I feel guilty if I can’t tell them that I “feel better.” I feel like I should know how to make myself feel better … but of course, I don’t. Still, it feels dishonest to circumvent their questions with a shorter answer: “I’m doing well.” (Not really.) “I had a good week!” (Which might be mostly true, except for the massive headaches, stiff joints, utter lack of energy, stress, persistent nausea …) “Haha, it’s no big deal!” There it is — that’s the answer most commonly escaping my lips. It perfectly balances a partial truth with a lack of complaint — “Oh, you know, I’ve not been feeling well, but it’s normal for me! No biggie, really! I’m all good, haha …” It’s easiest to be flippant.
But let me be clear: This thing has developed for me over many years, and has worsened steadily throughout all my life, so I often don’t know how to interpret its severity. I strongly suspect that if any generally healthy human being woke up one morning suddenly feeling like I feel even on my best days, they’d probably think they were dying (or at the very least, they’d stay home from work and see a doctor about whether or not they might have the flu). I like to think that I am strong, and that I can handle this. But the reality is that more often than not I feel overwhelmed by it, particularly when I am also tasked with the daily demands of work, financial responsibilities, keeping my house clean, interacting meaningfully with other human beings. This is not something that in any way justifies flippancy. I am prone to characterize my diseases as “minor chronic illnesses,” because, really, they don’t prohibit me from doing anything I want to do, and they are not at all life-threatening. But I believe that I am wrong to minimize what I am experiencing. I am seriously ill.
I think people who have these wispy, elusive, hard-to-diagnose illnesses (most of which are shunned by conventional medicine), ought not to feel compelled to characterize their illnesses as less serious just because they don’t functionally inhibit or threaten their lives. And it only exacerbates the severity of such diseases to try to explain them away as “not a big deal.” I’ve been told by my share of doctors that my pain does not exist, that it’s only in my head, that there’s actually nothing wrong with me, that I just need counseling. But I hope that no one who’s struggling with chronic disease feels that they must accept such an explanation — I have struggled with the possibility that those doctors may be right. I have doubted my perceptions, I have tried to ignore my sicknesses, but I have found such attempts to be maddening, and wholly unproductive.
Many’s the time I’ve been mistaken,
And many times confused
And I’ve often felt forsaken,
And certainly misused.
But it’s all right, it’s all right,
I’m just weary to my bones
Still, tomorrow’s gonna be another working day
And I’m trying to get some rest,
That’s all, I’m trying to get some rest.
– Paul Simon, American Tune
My illness is serious because it is pervasive. It affects every system in my body. It makes itself known from the deep, resounding headaches in my throbbing skull to my swollen, itchy, burning feet, and through all the aching joints, strained nerves, and tense muscles in between. And it is pervasive in another sense — namely that it affects every moment of every day of my life. It is my ever-present companion, and I do nothing that is not directly impacted by illness. When I am comfortable or laughing or enjoying life, it is only because of the miracle of distraction, when I can envelop myself so thoroughly in something delightful that for a few shining moments I’m capable of shoving pain into some corner of my mind where it cannot assert itself so strongly as before. Nonetheless, it is there. And such moments are short-lived. Pain is a staunch, unyielding foe, and its grip on the mind can be every bit as unrelenting as its ravaging of the body.
This is another persistent frustration, that not only can I not control the physical aspects of my illness, but I am also helpless to correct its influences on my mental states. There are things in life that I love and enjoy, but I must constantly work past some fog or malaise that hangs heavy on my mind in order to give my full attention to anything outside myself. There are days when I can hardly get a sentence out straight, much less carry on a meaningful conversation with a friend. There are days when my brain feels so fried by its constant struggle to process my pain that I can barely move, much less take the time to practice drawing, or to vacuum my carpets, or to cook a meal. And these things always make me feel guilty, because I know that I am also at some level choosing not to invest in the things I love. Because even though I feel like I’m incapable of doing anything, I know that if I force myself, I am truly capable of doing whatever I want. I don’t know if that will make sense if you haven’t experienced it. Basically, I don’t feel as though I’m ill enough to justify the kind of lethargy that I often feel (both physically and mentally) that my illness requires. And so, guilt-ridden, I chide myself for laziness and apathy, all the while also grieving deeply that I do not have the energy that would allow me to enjoy life and people and all my blessings more thoroughly.
I never learned to count my blessings,
I choose instead to dwell in my disasters.
I walk on down the hill,
Through grass grown tall and brown,
And still it’s hard somehow to let go of my pain.
Will I always feel this way?
– Ray LaMontagne, Empty
I am constantly aware of God’s faithfulness, and of the many blessings He’s given me. And yet, in the throes of daily pains, I all too often choose to neglect edifying thoughts, dwelling rather on my helplessness, emptiness, loneliness. Pain drives you inward. It provides the perfect breeding grounds for selfishness, and it entices your thoughts towards whatever is morose and malcontent in your nature. It focuses all your energies on yourself, but then it cuts you down to nothing, until the only words you’re still able to express are “I can’t do this anymore.” I am often astounded by how perfectly inept I feel to any significant task. Physical work makes me weary and sore, sedentary work makes me weary and sore … existing makes me weary and sore. By the end of a normal eight-hour workday, I am so exhausted that I often just go home, collapse on the couch until a reasonable hour for bed, then drag myself from the living room to the bedroom to sleep away the pain until the alarm blares once again. Sometimes even watching television provides no enjoyable distraction, so I sit and stare blankly, or I cry. I cry at the drop of a hat these days. Often I can’t control it, and I find myself letting fall a few stray tears during an everyday conversation, or in other inappropriate settings. I think I sometimes distress people that way. I can’t help it.
I long to be understood. I am drawn to people who “get it,” because for a long time I didn’t even know that there were others who experience the world through a similar veil of pain. There is comfort in talking with those people. There is comfort in hearing someone say, “I’ve asked God why He even gave me children, because obviously I’m not well enough to take care of them.” This is comforting not because I delight in the pain of another human being — I would not wish my illnesses on anyone. But it is comforting because I have had similar thoughts, though I have no children, obviously. It is a comfort to know that I’m not the only one who sometimes questions why I’ve been tasked with the great endeavor of living the Christian life while dealing with chronic illness. There is comfort in telling someone I’m not feeling well, and seeing in their eyes that they know exactly what that means. I try to remember that such people exist, because I often feel incredibly lonely otherwise. It is an awful thing to feel as though you must encounter the most frightful struggles of your life entirely on your own.
But at least I do have some mastery over my thoughts, or, rather, God is gracious in allowing me to maintain hope throughout. I know that I do not suffer in vain, but that He has some greater purpose for my struggles. I know that I can trust Him, and that there is always hope. Indeed, only recently I’ve heard many good things from many different people about a doctor in Lynchburg who might just be able to help me.
Still, I am more nervous about this hope than excited. For one thing, I don’t think I can afford it — I’m doing well to pay the bills I already have, haha. (Thank goodness that I am able to work after all, and thank goodness for my job!) But deeper than that is a fear I hesitate to mention — it reveals too clearly what I really think about my illness: I am afraid to be healthy. I can’t remember ever feeling well, and if I started to become healthy now, I don’t quite know who I might become. Either I would finally have the energy I’ve always longed for — I’d spend more time with more people, spend more time developing skills and doing things I love … Or, I would be the same old me, with the same old laziness, and the same old sins. I won’t be able to hide behind my sickness, or to use it as an excuse. I am afraid that my feelings of guilt will turn out to have been justified. And I wonder if deep down I do think of myself as merely an object of pity, as worthy of compassion in some special sense. I wonder if it might not turn out that in allowing myself to accept the severity of my illness, I may also have allowed myself to feel (at least in part) defined by my illness. What does it mean to exist in the world as myself, and yet to exist apart from this lifelong affliction? I wonder how profoundly being well might change my identity and my thoughts. This is a manifold concern, and it involves perhaps too much to relate clearly here … nevertheless,
… God gave us a spirit not of fear but of power and love and self-control. – 2 Timothy 1:7
When it comes down to it, no matter how dark the days become, and no matter how utterly shattered I feel, I am unutterably thankful that God is faithful, and that I know this to be true. I have no power of my own, no capacity for love, quite an unsound mind, very little self-control, but God is strongest in my weakness — thank goodness, I can only claim my failings for myself, but God triumphs over illness for me, daily. When I shudder at the length of each day and at the drudging, aching, befuddled hours ahead, God is faithful — for He not only carries me through each of those hours, but He is Provident all along the way, even when I do not clearly perceive His goodness.
I hesitate to post this publicly … it feels raw, and the part of me that likes to seem as though I’ve got it all together is working very hard to convince me not to air my shortcomings. The part of me that feels guilty all the time is trying to convince me that this is just a cry for attention, for pity, etc. The part of me that wants to be understood thinks it’s silly to post such a messy, personal post, with such limited application to so few others. But perhaps someone will read it, and will find the same sort of comfort I’ve found in knowing that I’m not the only one with chronic pain, and that I’m not the only one who has such muddled, desperate thoughts. Writing this down has been cathartic for me, so perhaps reading it will be so for another.