Mar Visser

@m-visser | contributor
I am a singer, a mom and a warrior in the fight against chronic migraine and fibromyalgia.

A Doctor Said My Fibromyalgia Treatment Was ‘Hilarious’

I have received many comments and advice about my pain under the guise of well-meaning concern. So this is my response, a kind of plea to those who may or may not get what people with invisible illnesses are going through. Lakshmi wearing Kinesio tape. My younger son Vishruth had some kind of swelling under his eye and I took him to the doctor to check it out. My most recent flare-up was in my temporomandibular joint (TMJ), and my therapist had taped my jaw joint using bright pink Kinesio tape. Obviously, the sight of someone walking around with bright pink tape on her jaw is bound to attract attention. So the doctor who attended to Vishruth asked me about it. I told him I have fibromyalgia and I get flare-ups in every part of my body, and this time it is in my TMJ area; hence, my therapist taped it to contain the inflammation. Were you able to spot a joke hidden in my explanation? I didn’t think so, either. So when the doctor laughed and said, “That’s hilarious,” I was shell-shocked. He is actually a very good doctor and does not prescribe unnecessary medications. I managed to recover and said, “Bright pink tape instead of the regular, drab white one does look hilarious.” I collected Vishruth’s prescription and came back home, obviously disappointed. I agree the doctor might not know everything (he is a human being, after all) and maybe he is not aware of fibromyalgia or even taping in physiotherapy. Maybe it is not as prevalent in India as it is abroad. I have used taping and have also seen it used extensively when I trained for and completed the Nike Women’s Marathon in 2007. It was not the lack of awareness that bothered me, but the sheer insensitivity of his comment. I have found that people are supportive of illnesses they can see, like a fracture, flu or cold, or a life-threatening condition. But for the in-betweens like me, the ones who have chronic illnesses but look all right from outside, they are always ready — ready to pass judgment, ready to find fault, ready to offer solutions. Here is a small list of what I have heard over the years about my illness: “You got fibromyalgia because you are not exercising. You are doing ___, you are not doing ___.” “You got fibromyalgia because you had an epidural during labor.” “You got fibromyalgia because you had a procedure.” “You must be imagining you are in pain. No one can be in pain all the time. It’s in your head, you are hallucinating.” “You should stop thinking about the pain, as thinking about it and making a big deal about it is not going to help you. Instead, just put it out of your mind and divert yourself.” “I know someone who knows someone who practices hypnosis or does some kind of magic and has cured cancer, diabetes and every other disease. They can cure you.” I get it. People do it because they are concerned. They are worried and cannot understand how someone who looks healthy, is able to manage their chores and daily activities, and has some semblance of a social life is not getting better. Maybe they think I am not trying hard to get better, or maybe I am not getting better according to their schedule. I did yoga and exercised regularly, but I was diagnosed with an arrhythmia and later a slipped disk and had to stop yoga. I saw a cardiologist, a neurologist, an orthopedist and several other doctors for all my individual symptoms, but no one could provide me with any relief. I even tried Ayurveda medicine, and it did not work out for me. When I met a final doctor, based on all my previous experiences with other doctors who did not believe me, I did not even tell him about my fibromyalgia condition. He examined me and promptly noted that I, indeed, have fibromyalgia. All the comments from my previous doctors had affected me so much that I asked him several times whether I was hallucinating or imagining that I was in pain. He said, “Fibromyalgia pain is very real and can be excruciating. In your situation, even though you were diagnosed in 2008, you have not received any kind of treatment or continuous medications, so your fibromyalgia is chronic. It will take some time and a lot of patience to bring it under control.” My symptoms are not consistent. They vary every single day. I have stopped working now because the pain became too much to bear, and I was unable to spend any kind of time with my husband and the kids. I became someone I did not recognize. I started seeing a cognitive behavioral therapist, tackled one task at a time and sometimes pushed myself to do more than I could handle, only to be hit with a massive flare-up or a series of small flare-ups. But I am trying hard to motivate myself, get back up again and again after every fall, not give up hope, and to count my blessings and not the burdens. I am working very hard to build up my resistance and strength — I have moved up from running a 1K to a 2K and now a 5K. I am doing all I can to get better, but it is on my schedule, not someone else’s. Like I said, I really do get where you are coming from. I get your concern, but are you able to get that I smile and move on with my life because I choose to be like that — I choose to hide the pain and the grimace on my face and replace it with a smile? I am not asking for your empathy or understanding even. All I ask is that you don’t judge based on what you see. People living with invisible illnesses could do without the insensitive remarks. A version of this post first appeared on LGV Blogs. The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

A Doctor Said My Fibromyalgia Treatment Was ‘Hilarious’

I have received many comments and advice about my pain under the guise of well-meaning concern. So this is my response, a kind of plea to those who may or may not get what people with invisible illnesses are going through. Lakshmi wearing Kinesio tape. My younger son Vishruth had some kind of swelling under his eye and I took him to the doctor to check it out. My most recent flare-up was in my temporomandibular joint (TMJ), and my therapist had taped my jaw joint using bright pink Kinesio tape. Obviously, the sight of someone walking around with bright pink tape on her jaw is bound to attract attention. So the doctor who attended to Vishruth asked me about it. I told him I have fibromyalgia and I get flare-ups in every part of my body, and this time it is in my TMJ area; hence, my therapist taped it to contain the inflammation. Were you able to spot a joke hidden in my explanation? I didn’t think so, either. So when the doctor laughed and said, “That’s hilarious,” I was shell-shocked. He is actually a very good doctor and does not prescribe unnecessary medications. I managed to recover and said, “Bright pink tape instead of the regular, drab white one does look hilarious.” I collected Vishruth’s prescription and came back home, obviously disappointed. I agree the doctor might not know everything (he is a human being, after all) and maybe he is not aware of fibromyalgia or even taping in physiotherapy. Maybe it is not as prevalent in India as it is abroad. I have used taping and have also seen it used extensively when I trained for and completed the Nike Women’s Marathon in 2007. It was not the lack of awareness that bothered me, but the sheer insensitivity of his comment. I have found that people are supportive of illnesses they can see, like a fracture, flu or cold, or a life-threatening condition. But for the in-betweens like me, the ones who have chronic illnesses but look all right from outside, they are always ready — ready to pass judgment, ready to find fault, ready to offer solutions. Here is a small list of what I have heard over the years about my illness: “You got fibromyalgia because you are not exercising. You are doing ___, you are not doing ___.” “You got fibromyalgia because you had an epidural during labor.” “You got fibromyalgia because you had a procedure.” “You must be imagining you are in pain. No one can be in pain all the time. It’s in your head, you are hallucinating.” “You should stop thinking about the pain, as thinking about it and making a big deal about it is not going to help you. Instead, just put it out of your mind and divert yourself.” “I know someone who knows someone who practices hypnosis or does some kind of magic and has cured cancer, diabetes and every other disease. They can cure you.” I get it. People do it because they are concerned. They are worried and cannot understand how someone who looks healthy, is able to manage their chores and daily activities, and has some semblance of a social life is not getting better. Maybe they think I am not trying hard to get better, or maybe I am not getting better according to their schedule. I did yoga and exercised regularly, but I was diagnosed with an arrhythmia and later a slipped disk and had to stop yoga. I saw a cardiologist, a neurologist, an orthopedist and several other doctors for all my individual symptoms, but no one could provide me with any relief. I even tried Ayurveda medicine, and it did not work out for me. When I met a final doctor, based on all my previous experiences with other doctors who did not believe me, I did not even tell him about my fibromyalgia condition. He examined me and promptly noted that I, indeed, have fibromyalgia. All the comments from my previous doctors had affected me so much that I asked him several times whether I was hallucinating or imagining that I was in pain. He said, “Fibromyalgia pain is very real and can be excruciating. In your situation, even though you were diagnosed in 2008, you have not received any kind of treatment or continuous medications, so your fibromyalgia is chronic. It will take some time and a lot of patience to bring it under control.” My symptoms are not consistent. They vary every single day. I have stopped working now because the pain became too much to bear, and I was unable to spend any kind of time with my husband and the kids. I became someone I did not recognize. I started seeing a cognitive behavioral therapist, tackled one task at a time and sometimes pushed myself to do more than I could handle, only to be hit with a massive flare-up or a series of small flare-ups. But I am trying hard to motivate myself, get back up again and again after every fall, not give up hope, and to count my blessings and not the burdens. I am working very hard to build up my resistance and strength — I have moved up from running a 1K to a 2K and now a 5K. I am doing all I can to get better, but it is on my schedule, not someone else’s. Like I said, I really do get where you are coming from. I get your concern, but are you able to get that I smile and move on with my life because I choose to be like that — I choose to hide the pain and the grimace on my face and replace it with a smile? I am not asking for your empathy or understanding even. All I ask is that you don’t judge based on what you see. People living with invisible illnesses could do without the insensitive remarks. A version of this post first appeared on LGV Blogs. The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Community Voices

Why This New Self-Isolation Feels so Comfortable to Me

There is an intensity to these days that we are finding ourselves in. There is a sense of building anxiety, fed by inactivity and a loss of routine, a feeling of helplessness to fight an invisible enemy. The corona virus has challenged us all to live alongside fear and uncertainty. And yet there is beauty to found in this time. In our international solitudes, I am seeing new communities emerge, I’m seeing judgements put aside and kindness tendrilling outward.

Within all the fear and uncertainty, I am living in a state of serenity and calm that I’ve had trouble defining. Why, when the world seems to be crumbling around me, am I feeling so peaceful?

When I hear from friends and family, the question is always, “How are you coping? How are you holding up?” and I struggle to explain that this is my normal, only enhanced.

I have fibromyalgia and chronic migraines, along with a few ‘possible comorbidities’. The last few years my life has shrunk down to essentials. A trip to the grocery store, for example, has to be carefully choreographed to happen at the right time of day with the right level of support and is generally followed by a long nap and a day of relaxation. Staying at home for long stretches of time is my normal. Not seeing people for days at a time is how I live my everyday life.

While the fear and anxiety around corona virus are all very real to me, my home has become a bubble of peace and contentment. Suddenly, there are so many people sampling the nice parts of my lifestyle and the pressure to achieve that I usually feel are no longer there. There is no one asking what I do. There is no one asking me why I don’t work. There is no one

questioning the validity of my lifestyle or the veracity of my disability. There are bountiful resources sharing ideas to fill the long inactive hours. I’ve found free watercolour and drawing classes. I see people posting photographs and ideas, poetry and thought, hope and fear online. Suddenly, I’m not lonely – a member of a small community united by illness (fabulous, inspiring, community that it is), but of a world-wide movement of people of every walk of life working to uplift and inspire each other.

With the perceived judgement of the outside world gone, I’m able to focus more on what is important to me. I’m not trying to defend myself emotionally from judgement. I’m not striving to find a way to ‘live normally’ by finding a career that will fit into my tiny reserves of energy. I’m not panicking at my inner feminist who likes to shout ‘How did you end up a fifty

year old woman with no career, staying at home, supported by your husband?!!!’. Instead, I’m seeing my value. I’m seeing the small ways that I contribute every day, the way I keep things running smoothly for my family, how I keep things calm; the way I intentionally reach out with kindness to strangers who are struggling that I have met through various forums; how I support my friends; how I partner with my spouse to keep him healthy and happy; how I keep my world beautiful with thoughts, poetry, plants, walks and conversation. These are all tiny things but together they make a beautiful and valuable life.

And every day since this started I’ve thought, how wonderful if we could just keep this sense of community, this kindness and gentleness, this lack of judgement and apply it to our lives when we return to our routines, what a wonderful world that could be.

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Community Voices

My own family hates me #Anxiety #Fatshaming

<p>My own family hates me <a class="tm-topic-link mighty-topic" title="Anxiety" href="/topic/anxiety/" data-id="5b23ce5f00553f33fe98d1b4" data-name="Anxiety" aria-label="hashtag Anxiety">#Anxiety</a> <a class="tm-topic-link ugc-topic" title="fat-shaming" href="/topic/fat-shaming/" data-id="5b23ce7e00553f33fe9928a2" data-name="fat-shaming" aria-label="hashtag fat-shaming">#Fatshaming</a></p>
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Mar Visser

Making New Year's Resolutions With Chronic Illness

I’ve always hated the concept of New Year’s resolutions, and yet I feel compelled to make them. It’s something about the frenzy of the holidays, the knowledge that sugar is going to make up a large part of my diet, that my fatigue will flatten me as soon as I allow myself to slow down, and the fact that all that busy-ness will suddenly stop and leave a gap that pulls me towards making a fresh start. That pause in routine, that inward breath, compels me to think about choices and consider new plans. Of course, chronic illness makes this all a little more interesting. I would love my resolutions to be about getting that new job, traveling somewhere exotic, maybe start hiking the Bruce Trail, but my goals need to be a little more quiet, stately. Every idea is framed with “if I can manage it,” “we’ll see how this goes” and “if nothing else catastrophic happens.” So the resolutions need to be small and meaningful. Hopeful but realistic. Of course, diet is always the first thing. But for those of us who are sick, this takes on a whole new dimension. There is a world of diet advice out there and each one assures you that it is truly going to turn around your life and make your weird symptoms disappear. I have fibromyalgia, primarily. It’s one of the mysterious diseases that doctors don’t really understand. They’ve decided it’s real (Oh my, thank you for the recognition that I am not faking the killer pain in my completely healthy feet, the crushing fatigue, the back pain that shifts from point to point). They figure it’s neurological, but don’t seem to really get much beyond that. So no, Nancy, gluten-free is not going to cure me, paleo will not magically make my pain go away and there is no weird allergy causing my discomfort. However, I have decided to accept help and advice when it is being offered to me. One of the services my health team provides is a pharmacist who has some background as a dietician who is willing to help me set up a keto-inspired meal plan to potentially help with some of my inflammatory symptoms. While I don’t believe a keto diet is the answer to my prayers, I do know that my diet has been crap and that the more fatigued I get, the worse my diet is getting. I believe eating better will help me feel better, so I will gladly accept her advice. Hopefully, we can find ways to make a diet that will work for my weird stomach and that I will be able to manage with my fatigue. So there are two resolutions: Accepting help where it’s offered and improving my diet within the boundaries my life creates. Secondary to my diet is the usual “living my best life” kind of thing. As a chronically ill person, my goals need to be small and achievable. I struggle hugely with this because being sick is incredibly boring. It truly is not lying about on my chaise eating bon-bons. I’m constantly trying to come up with inventive ways to fill my time, even maybe make a little cash. So to start this new year, I’m thinking very small. Planning my day so self-care is the most important component and then working on activities and hobbies to add color to my days. I’m experimenting with a wide variety of activities to see what I can manage, what I enjoy and working them into my daily routines. I’m hoping experimentation and structure will help keep the depression that is the companion of my chronic illness at bay. If these goals sound wishy-washy or ill-defined, they are. I find that it’s a necessity of illness to not be dogmatic. It’s easy to say “I’ll do yoga four times a week” until your back decides that “gentle yoga” was way too aggressive and goes into spasm. Every decision, every change, must be done slowly and carefully. Backtracking can’t be seen as a negative, but as a necessary readjustment to better suit your body’s needs. And this may need to be done weekly or even daily as your body changes or flares. All of these resolutions need to be done with gentleness and consideration of your physical needs. So, onwards to a new decade — filled with the hopefulness that taking care of something with tenderness brings. Even if that something is me.

Mar Visser

Staying Positive During a Fibromyalgia Flare

I recently came through a fairly dark spell with my illness where the fatigue and pain got the better of me and not having answers that gave me a clear path forward frustrated me. My response was to curl into a ball and give up for a little bit — hide away from people I care about, stop trying to communicate about my experience, stop working to make things better. It happens. Fibromyalgia can be overwhelming when you hurt and are exhausted and your brain isn’t working well enough to formulate a plan to be as healthy as you can be. But cloudy days do pass and I’m back to trying. I have an obligation to do what I can to safeguard my body. It really hurts right now, but I still have good days, I’m still mobile, I can still do most of what I need to do. To me, that means I need to kick myself in the butt a little — eat well on the days I can and don’t let dietary setbacks send me into a donut eating frenzy; write every day; make my body as strong as I can; go for a walk, even if it’s only around the block. Anything I can do to push the blackness away and protect my body from deterioration has to be a priority. For me, the biggest part of self-care is finding a focus for my mental energy, finding a purpose for my day even if I can’t get off the couch for more than 20 minutes at a time. I need to feel like I have a place in the world, in my community, in my family. I think we all do. We all want to feel like we are leaving a positive mark on the world. Finding that purpose is one of the hardest things about being sick. I’ve had to give up the things that would have formed my career. Most of that inner struggle has to do with other people’s opinions (or what I imagine their opinions to be) of my situation. I struggled with this already when I was a stay-at-home mom and now that I’m a 50-year-old at home, it’s only gotten worse. People always ask “what do you do?” Raising kids isn’t enough. Educating them isn’t enough (unless you’re paid). I got some credibility when I started a girls’ choir in my town, so I just started calling myself a music educator. Then I started teaching voice lessons again and I felt more acceptable. But when fibro made those things impossible, I lost my professional credentials. People ask me that question in the most intrusive ways: “What are you doing? Still running the choir? Still doing your music? Still singing?” The disappointment on their faces when I say no is obvious, and it makes my position as an independent, able, intelligent, feminist woman feel so tenuous. I know in my heart that these questions aren’t malicious. Most people are curious and wish me well. They have a magical idea of what a musician is and really want me to be that person. I want to be that person. But having to awkwardly answer that question is so hard. What am I doing? Taking care of myself and my kids? A wee bit of housework? A daily walk? It’s hard to convey how important those things are right now. I kind of sparkle things up with bold, positive statements. I write. I’m currently collecting and selling vintage oddities (I don’t add that I’ve made all of $50). I’m teaching myself upholstery. I think that’s where the magic lies when you have an incurable, invisible illness. You’ve got to find the sparkle, the meaning in the little things. Most of us spend a lot of time researching the best approaches to our illnesses. Most of us spend a lot of time planning and preparing appropriate food. We listen to podcasts, read interesting books, listen to new music, craft, color, talk to our kids. All of these little things can add beauty and shape to our days. I’ve added small hobbies to the list. I wanted new furniture, so I’m teaching myself to upholster instead. It takes me forever as it hurts my hands and back, but that’s OK – I have lots of time. Since I couldn’t do a lot of gardening this year, I took up indoor plants and am learning to care for them and propagate them. And, of course, just caring for myself through this fibro flare and being present for my family are the two most important things I can be doing right now. During that dark couple of months, exhaustion crept over me. It was so hard to plan meals. The heat and humidity kept me indoors for long stretches. The constantly changing weather played havoc with my headaches. But while I was moping on the couch, little habits started that helped pass the time. I found podcasts that interested me. I found YouTube videos that sparked new ideas I was able to bookmark for a time when I felt better. I discovered some of the foods that upset my system. All that time, ideas were percolating and concepts of how I might move forward were growing. And now, it’s time to slowly put my ideas into action. Short walks, better eating, physiotherapy, a new referral, daily writing, hobbies — all of it is a start to better management of my symptoms. And when my symptoms are being managed, my mind is clearer, I can function better and I can do a little more. And my days look brighter.

Community Voices
Community Voices

When People Encourage You to 'Think Positive' About Chronic Illness

I have been living with an autoimmune disease for nearly five years now. Cancel that. I have been living with an autoimmune disease for most of my life. I have known about it for nearly five years. Having a diagnosis is not what I expected it would be. I think I imagined it would lead down a direct path toward wellness. I anticipated an adjustment period in which I would master the management  of my illness before skipping back into the life I had always dreamed for myself, if only my health weren’t holding me back. Turns out autoimmune disease has its own agenda and mastering one looks a lot like being very still so as not to drown in quicksand. It feels like I’m simultaneously doing nothing and everything in my power not to drown. And as I’m holding still I’m watching, and I’m seeing the world in a way I had never seen it before when I was a moving part of it. One of the things I see is a whole lot of chronic illness warriors getting bullied with messages about positive thinking. If you feel like the idea of living your best life is ruining your life, you’re not alone. What I hear underpinning this notion is that the life I have is not enough. This doesn’t feel positive. It feels like victim blaming, and frankly I don’t need that because I’m still learning not to blame myself. Part of me still believes this is my fault. I understand that there is not a single action or series of actions I committed that caused me to develop celiac disease, bipolar disorder, SIBO or PCOS (and whatever remains undetermined). I get that I’m not to blame for my illnesses, but I still feel like I’m to blame for not overcoming them. I feel like I have failed to conquer by admitting that every aspect of my life from my activities, to the people in it, to the clothing I wear, has been curated by chronic illness, rather than lived in defiance of it. Sadly, I don’t think we have a proper context for understanding illness outside of recovery, and more unpleasantly, death. Wasn’t I supposed to rise l like a phoenix from the ashes and achieve all my dreams from the seat of the toilet where I’m forever perched? From that same seat was I not supposed to shepherd all my ill-brethren to uncharted inspirational territory where they, too, achieved their own dreams? Wasn’t I at least supposed to become a life coach? There is nothing inspirational about the absurd amount of time I have spent on the toilet. It’s not where I have epiphanies. It’s where I re-read the instructions on shampoo bottles and sniff my husband’s styling putty and deodorant to keep myself entertained. On a particularly exceptional day, I might come out of the bathroom with an idea for a story. In the event that I actually remember to use it, I might send out an article that will hopefully get a few likes or comments, and this is where I begin my downward spiral. Suddenly I think maybe my situation has nothing to do with autoimmune disease or mental illness. Maybe it’s me. Maybe I’m the only thing that’s holding me back. Maybe I’m using this as an excuse. Maybe I’m not trying hard enough. So instead of listening to my body, I push it, and it feels good for a minute, or however long it lasts before I crash. Let me tell you a secret I learned while I was on the toilet: I’m not leading my best life. I’m leading my only life. It includes doctors and tests, B-12 shots and naps and, episodically, frequent trips to the bathroom. It also includes people I love, pets I adore, and time spent practicing my craft and teaching it to others. It’s neither inspirational or unfortunate. The only time I feel unhappy with my life is when I think it should be more: more active, more balanced, more goal-oriented, more inspirational. When I hear noise about illness being overcome by positive attitude I want to shout, “Stop peddling your wares! Stop assuming that illness is a bad attitude or the manifestation of negative thoughts.” Chronic illness warriors are masters of positive thinking. Many times it’s the only thing that keeps us inching forward. Acceptance is positive, and it’s hard, and I’m up for that. Be more tells me you think I’m not enough, and that’s not cool. Instead of challenging sick people to think more positively we need to challenge the well and able-bodied to be more accepting.

Why a Gas Tank Is a Better Metaphor for Chronic Pain Than Spoon Theory

About a week ago, I tried to get out of bed. I cried out as I tried to sit up and unbelievable pain reverberated up and down my spine. My lower back paralyzed my movements, and tears welled in my eyes. By the time I was sitting up and I had managed to swing my legs out of bed — not that I “swing” anything these days — I was out of breath, crying quietly, and yearning to just lie back down. It took me 10 minutes to stand up, and I did that with the help of my husband. I was sweating and ready to go back to bed. However, the day was just starting. A few years ago, someone introduced me to the Spoon Theory as I was trying to apologize and explain why I could not attend yet another event, an outing which had been planned for some time. When I read “The Spoon Theory” by Christine Miserandino, I was struck by two things: how much I could relate to the things she was saying and at the same time, how inadequate the metaphor of spoons was to my life. It has been years, and I still struggle with my complicated relationship to the Spoon Theory. I kept coming back to the fact that I wish I had “spoons” from which I could deduct. However, my energy and ability levels are more like a sieve, in that I’m constantly being drained. I’ve been wracking my brain for years on a suitable metaphor, and this is what I’ve come up with: my energy and ability are like a gas tank without a gauge. Frequently and understandably, I find myself on “E.” The Spoon Theory posits that people who are sick have to make choices or conscious decisions about what to do with their day in ways that others do not. Each choice costs something, takes a toll, impacts future decisions — costs a “spoon.” And once you’re out of “spoons,” that’s it. It’s about feeling a little in control when something else (chronic illness) is controlling you. The problem with the Spoon Theory is that it’s too tangible and, in my opinion, it’s inaccurate for someone who lives with chronic pain or depression or, in my case, both. My family and friends think that I can sleep to replenish “spoons” or that if I don’t do one activity, I’ll have a “spoon” to do another. Other people have written about this, too, but I haven’t seen anything that presents a viable alternative to the Spoon Theory. My metaphor of the gas tank is different because unlike paying a toll to do a certain activity, I’m being drained of my energy and ability unceasingly. I make the metaphor of a gas tank for a number of reasons. For one thing, when I think about my car and where I need to go, I don’t always pay attention to the gas tank with every trip I take. For another, it’s almost impossible to plan the gas mileage/usage for my daily trips (I live in Atlanta, where traffic is as common as air). Additionally, every time I turn on the car, I lose some gas. When I idle with the car on to blast the AC, I use gas. Every trip takes gas. I’m constantly burning up fuel. The same goes for me and my energy and ability. The Spoon Theory doesn’t work for me because I get exhausted for just being. I don’t have “spoons” that can count out what I can and cannot do that day. Everything takes a toll. Just being up and out of bed costs energy. Talking to my husband, playing with my dog, convincing myself not to go back to bed all costs me something. And those aren’t even the “hard” things, like showering, cooking, cleaning the house, teaching. Staying awake costs me energy — it “burns gasoline.” Sitting instead of lying down, lying down instead of taking a bath, taking a bath instead of sleeping — all of these things cost me, often in unforeseen and unpredictable ways… Because I suffer from chronic illness, chronic pain, and depression, which can be intertwined, I leak energy throughout the day whether I nap or not, whether I get a full night’s sleep or not, whether I “take it easy” or not. My leaks are not quantifiable; they are cumulative. It doesn’t take a “spoon” or two or three to do my daily activities. I am operating in the dark, with no guarantee that the energy I exert is going to be worth it for the next step or the next part of the day. Here is an example. I was out with my husband and a couple of friends yesterday. I had slept the whole day, with the exception of about two or three hours. When I awoke, I didn’t know how much energy I had in me, but I knew I wasn’t driving the car on “full.” We met at 5:15 p.m. More people, friends of my friends but strangers to me, arrived by 6 p.m. Suddenly and unexpectedly, I had to interact with people differently than the way I had planned. I had to smile more and be more personable. By 6:30 p.m, I was feeling drained and just wanted food. By 7:30 p.m., extreme fatigue hit me and I couldn’t even finish my burger. I had to excuse myself by 8 p.m., and my husband had to drive home because I was too fatigued to do it. When I got home, I felt very tired but was hungry because I hadn’t finished my food. I contemplated heating up leftovers, but I decided instead to fall into bed. I slept for a solid four hours and woke up wide awake and, as usual, in a lot of pain. My new day was just starting. Now, as you imagine the gas tank, imagine that you don’t have a gas gauge. Pretend you don’t see your gas gauge. So you’re driving around not able to see it and you’re filling up your tank not able to see it. You know that starting up the car takes gasoline, as does driving from point A to point B… so does idling in the car at stop signs, at red lights, in traffic… I’ll give you another example. Today, I was writing and my blood sugar suddenly dropped. I recognized the signs and was able to get sugar in me, but the effort it took to do this was intense. My body was convulsing, my hands were shaking, I felt a great weakness in my limbs and a heaviness in my body as I was on the verge of passing out. No warning, no exerting activity. Just sitting on the sofa writing one minute and then the feeling of spinning into darkness the next. This was not a “spoon” that I gave away. This was the constant drain of the gas tank, only I hadn’t realized that my fuel was almost at “E.” I think the Spoon Theory has its merits, but I also think it doesn’t address what chronic illness is like with chronic pain — where you’re in a constant state of distress because of the pain — and depression — which can be influenced by the chronic pain and vice versa. I suffer from a multitude of chronic conditions, and using the Spoon Theory gives people the impression that I simply need to rest to replenish my spoons or that if I give up one activity, I’ll have a spoon enough to do another activity. In reality, I am constantly draining energy. The Spoon Theory gives the illusion of predictability, even as it disavows it. My alternative shows that there is no predictability. I listen to my body and she tells me what I can and cannot do from hour to hour, minute to minute. I cannot rest and reset.