Kristy Johnston

@kristyjohnston34315083 | contributor
I’ve been living with a severe case of ME/CFS for 5 years. It was a mild case for another 10 or so before that. I love encouraging others who suffer with similar conditions, through my writing.
Community Voices

Injury Adventure Stories Versus Invisible Illness Dramas

Broken arm adventure story

My 6-year-old daughter broke her arm at school yesterday afternoon. Today, after an early morning hospital checkup, she was itching to get back to school so we awkwardly wrestled her uniform over the bulky plaster cast on her right arm and dropped her off.

At school, she was given a hero’s welcome. Her classmates were eager to hear what had happened, and the teacher kindly let her stand up the front to tell her story. Some close friends handed her a homemade sympathy card. And she can’t wait to have her playmates sign the cast once it’s fully dried!

I’ve been struck by how different my daughter’s visible injury adventure story has been to my invisible neuroimmune illness story over the past six years.

Diagnosis and treatment: broken arm

With a broken arm, doctors know what to do. They ask a few questions, gently prod the arm to assess the likelihood of a break, and send the patient to get an x-ray. Once the break is confirmed, the patient goes to hospital to get the bone reset and placed in a cast.

Simple. Predictable. A routine procedure.

Recovery: broken arm

Bones take time to mend. Inconveniences and temporary limitations are involved. But in the end, broken bones heal: it’s expected that my daughter’s life will go back to normal within about six weeks. She’ll have a good story to tell in years to come, and the break will become a distant memory.

The ME/CFS drama

In contrast, my invisible illness experience has been less of an adventure story and more of a poorly written drama. Adventure stories offer action-packed plots with a clear progression — an orientation, a series of compelling complications, a suspenseful climax and a satisfying resolution — whereas invisible illness dramas lack structure, progress haphazardly, and fail to resolve.

Slow and sloppy plots are not what great stories are made of! And without a happy ending, ME/CFS is not a crowd-pleaser either.

Diagnosis: ME/

Doctors are stumped when a patient’s symptoms don’t fit into a clearly defined category. It can take years to get a diagnosis, after many exhausting and disheartening failed attempts at finding the cause of the patient’s illness.

Treatment: ME/

Treatment protocols are at best nebulous and only partially effective for a small percentage of patients. At worst, they are inaccessible (particularly to the most severely affected patients who are unable to leave their homes) and even harmful.

ME/ has no known cure, and the official treatment protocol is hotly debated. There is considerable pressure for the current recommendations to be scrapped, due to www.bbc.com/news/health-43490335 study whose conclusions are misleading.

Recovery: ME/

As for getting back on the horse and returning to your normal life, this is another difference between a broken arm and ME/. www.meaction.net/about/what-is-me. I am one of them. And there is no end in sight.

The symptoms of each ME/ patient wax and wane like the sea tides, ranging from mildly inconvenient to severely debilitating depending on the day; but contrary to the rhythmic ebb and flow of ocean tides, our symptoms are unpredictable. Our only way forward is to make drastic lifestyle changes — lopping and clearing away energy-sucking activities (even the fun ones) to allow for adequate rest time — and to do the hard emotional work of rebuilding our sense of self on a barren and unfamiliar plot of land.

Not all good stories have happy endings!

Thankfully, a story doesn’t need to have a happy ending to be worth reading. Similarly, our lives don’t have to follow the expected trajectory in order to be meaningful.

We love our children with all of our (limited) strength. We contribute and volunteer where we can, to make a positive difference in the lives of others. And we remain thankful for the gift of life — for while there is breath, there is hope…

Perhaps, some day, the typical ME/ story will be more like a fast-paced adventure than a dreary drama. With more funding for research, future generations of ME/ sufferers might be able to follow a clearly defined diagnosis, treatment and recovery path.

Until then, we do our best to strengthen what remains and appreciate each new day we are given: Dum spiro spero — while I breathe, I hope.

#ChronicFatigueSyndrome

Thank You Letter to Chronic Fatigue Syndrome

Dear chronic fatigue syndrome, I need to get a few things off my chest. First of all, you need to change your name. You have a confusing name. Life with you involves much more than just feeling tired all the time. Plus, your name doesn’t even have capital letters, but your acronym has extra capital letters: ME/CFS. The name needs to go. Secondly, my husband and I most definitely have not enjoyed your company over the past two years. You moved in uninvited, for starters. And at a most inopportune time: two weeks before our second baby was born. How rude, taking my mobility away at such a time! Caring for a newborn and toddler is demanding work. Our kids are now 2 and 4, and they don’t know life without you… Sick Mommy trying in vain to have a rest while the kids watch TV Thirdly, I don’t appreciate your invisibility. Sneaky and sly, you evaded medical detection for quite some time. I knew something was wrong, but had no name for my debilitating symptoms. Was it post-natal depression? Was sleep-deprivation making me this way? Terribly confusing. So even though I dislike your name, I’m sort of glad you at least have a name!  Now we know how to treat you. Lastly, you present me with a dilemma: I’m mysteriously contented. More contented now than I remember being pre-illness. Bizarre. Paradoxical. But true… I’m being forced to accept a much simpler life. Unfettered by my old “friends” – busyness, perfectionism and over-achievement – my spirit is thriving. I hesitate to admit this, for fear that you’ll mistake it as appreciation. I concede I’ve changed for the better during your time with us.  My tunnel-visioned, self-sufficient independence has given way to a more community-oriented interdependence. Our children are cared for by a small army – paid and unpaid – of loving people devoted to their well-being. It’s taking a “village” to raise our two kids. By necessity, not by choice (I do miss them). But I’ve been pleasantly surprised! This less mommy-centric model is actually working OK. The kids are resilient and playful and intact. I’m no longer terrified that you’ll destroy them. Again, please do not misconstrue this as praise, but our marriage has even grown since you moved in. I’ve become less nit-picky and less critical of my husband. You are such a truly awful pest to live with, ME/CFS. I’ve got bigger fish to fry with you around! Your presence has given me a different perspective on my husband. Who cares if he leaves his clothes on the bedroom floor and scrapes the margarine out messily and leaves cupboard doors open? He’s doing all he can to love us, while putting up with you, and that means the world to me. I’m more patient with him now. And kinder. And more trusting. He hasn’t changed; I have – for the better. Chronic fatigue syndrome, my life is now bare where it used to be blooming. I’ve lost my career. I’ve lost touch with friends. I’ve lost my social life, my independence, my mobility. I’m not the vibrant, active mother I set out to be. My short-term memory is worse than ever. I have become unreliable. (My poor husband!) I struggle to concentrate on simple things. But different parts of me are flourishing now. On a “babymoon” holiday, a few weeks before the virus that triggered ME/CFS knocked me out. Parts that were weak and neglected before have become strengths, even assets. I’m becoming a less self-absorbed, less opinionated person. I’m more grateful, calmer and more gentle. Yes, I still have days where it’s all too sad – the losses still overwhelm me sometimes. But I can’t deny the beauty that’s present in my “new” life. I’m growing. Is it because of you, or despite you? Or a bit of both? You really are an enigmatic character, chronic fatigue syndrome. Keenly unwanted and truly awful, yet at the same time, you’ve enriched our lives… I’ve got it! You are a bit like compost. Smelly, disgusting, putrid, rotting, nutrient-rich compost. A reminder that new life can sprout from unpleasant sources. Compost… That’s your new nickname. I like it better than your real name. Regards, Ruth Follow this journey on Fruitful Today.

Thank You Letter to Chronic Fatigue Syndrome

Dear chronic fatigue syndrome, I need to get a few things off my chest. First of all, you need to change your name. You have a confusing name. Life with you involves much more than just feeling tired all the time. Plus, your name doesn’t even have capital letters, but your acronym has extra capital letters: ME/CFS. The name needs to go. Secondly, my husband and I most definitely have not enjoyed your company over the past two years. You moved in uninvited, for starters. And at a most inopportune time: two weeks before our second baby was born. How rude, taking my mobility away at such a time! Caring for a newborn and toddler is demanding work. Our kids are now 2 and 4, and they don’t know life without you… Sick Mommy trying in vain to have a rest while the kids watch TV Thirdly, I don’t appreciate your invisibility. Sneaky and sly, you evaded medical detection for quite some time. I knew something was wrong, but had no name for my debilitating symptoms. Was it post-natal depression? Was sleep-deprivation making me this way? Terribly confusing. So even though I dislike your name, I’m sort of glad you at least have a name!  Now we know how to treat you. Lastly, you present me with a dilemma: I’m mysteriously contented. More contented now than I remember being pre-illness. Bizarre. Paradoxical. But true… I’m being forced to accept a much simpler life. Unfettered by my old “friends” – busyness, perfectionism and over-achievement – my spirit is thriving. I hesitate to admit this, for fear that you’ll mistake it as appreciation. I concede I’ve changed for the better during your time with us.  My tunnel-visioned, self-sufficient independence has given way to a more community-oriented interdependence. Our children are cared for by a small army – paid and unpaid – of loving people devoted to their well-being. It’s taking a “village” to raise our two kids. By necessity, not by choice (I do miss them). But I’ve been pleasantly surprised! This less mommy-centric model is actually working OK. The kids are resilient and playful and intact. I’m no longer terrified that you’ll destroy them. Again, please do not misconstrue this as praise, but our marriage has even grown since you moved in. I’ve become less nit-picky and less critical of my husband. You are such a truly awful pest to live with, ME/CFS. I’ve got bigger fish to fry with you around! Your presence has given me a different perspective on my husband. Who cares if he leaves his clothes on the bedroom floor and scrapes the margarine out messily and leaves cupboard doors open? He’s doing all he can to love us, while putting up with you, and that means the world to me. I’m more patient with him now. And kinder. And more trusting. He hasn’t changed; I have – for the better. Chronic fatigue syndrome, my life is now bare where it used to be blooming. I’ve lost my career. I’ve lost touch with friends. I’ve lost my social life, my independence, my mobility. I’m not the vibrant, active mother I set out to be. My short-term memory is worse than ever. I have become unreliable. (My poor husband!) I struggle to concentrate on simple things. But different parts of me are flourishing now. On a “babymoon” holiday, a few weeks before the virus that triggered ME/CFS knocked me out. Parts that were weak and neglected before have become strengths, even assets. I’m becoming a less self-absorbed, less opinionated person. I’m more grateful, calmer and more gentle. Yes, I still have days where it’s all too sad – the losses still overwhelm me sometimes. But I can’t deny the beauty that’s present in my “new” life. I’m growing. Is it because of you, or despite you? Or a bit of both? You really are an enigmatic character, chronic fatigue syndrome. Keenly unwanted and truly awful, yet at the same time, you’ve enriched our lives… I’ve got it! You are a bit like compost. Smelly, disgusting, putrid, rotting, nutrient-rich compost. A reminder that new life can sprout from unpleasant sources. Compost… That’s your new nickname. I like it better than your real name. Regards, Ruth Follow this journey on Fruitful Today.

Thank You Letter to Chronic Fatigue Syndrome

Dear chronic fatigue syndrome, I need to get a few things off my chest. First of all, you need to change your name. You have a confusing name. Life with you involves much more than just feeling tired all the time. Plus, your name doesn’t even have capital letters, but your acronym has extra capital letters: ME/CFS. The name needs to go. Secondly, my husband and I most definitely have not enjoyed your company over the past two years. You moved in uninvited, for starters. And at a most inopportune time: two weeks before our second baby was born. How rude, taking my mobility away at such a time! Caring for a newborn and toddler is demanding work. Our kids are now 2 and 4, and they don’t know life without you… Sick Mommy trying in vain to have a rest while the kids watch TV Thirdly, I don’t appreciate your invisibility. Sneaky and sly, you evaded medical detection for quite some time. I knew something was wrong, but had no name for my debilitating symptoms. Was it post-natal depression? Was sleep-deprivation making me this way? Terribly confusing. So even though I dislike your name, I’m sort of glad you at least have a name!  Now we know how to treat you. Lastly, you present me with a dilemma: I’m mysteriously contented. More contented now than I remember being pre-illness. Bizarre. Paradoxical. But true… I’m being forced to accept a much simpler life. Unfettered by my old “friends” – busyness, perfectionism and over-achievement – my spirit is thriving. I hesitate to admit this, for fear that you’ll mistake it as appreciation. I concede I’ve changed for the better during your time with us.  My tunnel-visioned, self-sufficient independence has given way to a more community-oriented interdependence. Our children are cared for by a small army – paid and unpaid – of loving people devoted to their well-being. It’s taking a “village” to raise our two kids. By necessity, not by choice (I do miss them). But I’ve been pleasantly surprised! This less mommy-centric model is actually working OK. The kids are resilient and playful and intact. I’m no longer terrified that you’ll destroy them. Again, please do not misconstrue this as praise, but our marriage has even grown since you moved in. I’ve become less nit-picky and less critical of my husband. You are such a truly awful pest to live with, ME/CFS. I’ve got bigger fish to fry with you around! Your presence has given me a different perspective on my husband. Who cares if he leaves his clothes on the bedroom floor and scrapes the margarine out messily and leaves cupboard doors open? He’s doing all he can to love us, while putting up with you, and that means the world to me. I’m more patient with him now. And kinder. And more trusting. He hasn’t changed; I have – for the better. Chronic fatigue syndrome, my life is now bare where it used to be blooming. I’ve lost my career. I’ve lost touch with friends. I’ve lost my social life, my independence, my mobility. I’m not the vibrant, active mother I set out to be. My short-term memory is worse than ever. I have become unreliable. (My poor husband!) I struggle to concentrate on simple things. But different parts of me are flourishing now. On a “babymoon” holiday, a few weeks before the virus that triggered ME/CFS knocked me out. Parts that were weak and neglected before have become strengths, even assets. I’m becoming a less self-absorbed, less opinionated person. I’m more grateful, calmer and more gentle. Yes, I still have days where it’s all too sad – the losses still overwhelm me sometimes. But I can’t deny the beauty that’s present in my “new” life. I’m growing. Is it because of you, or despite you? Or a bit of both? You really are an enigmatic character, chronic fatigue syndrome. Keenly unwanted and truly awful, yet at the same time, you’ve enriched our lives… I’ve got it! You are a bit like compost. Smelly, disgusting, putrid, rotting, nutrient-rich compost. A reminder that new life can sprout from unpleasant sources. Compost… That’s your new nickname. I like it better than your real name. Regards, Ruth Follow this journey on Fruitful Today.

Balancing Between Hope and Acceptance of Chronic Illness

Do you ever find it difficult to balance between hope and acceptance of chronic illness? I thought that the longer I was sick, the easier this would be. The first time I was really sick with stomach problems, it lasted for seven years, and then with diet and supplements I was fully healed. This second time around, it’s been four years of constant pain, weakness and fatigue. Unfortunately, the treatments I have tried have not been successful in a full recovery and have provided only slight and temporary relief. I have read several self-help books on the stages of grief with chronic illness, the importance of accepting one’s illness, and how having hope and faith can contribute to overall well-being and healing. The challenge for me, is that hope and acceptance seem to be slightly opposing. How can I have hope and still accept my illness? Every time I take a new medication, supplement routine, exercise program or diet, I think to myself, “maybe this was the missing piece all along, and I will get better.” When I try something new, my hope is more alive than ever. Hope is a wonderful feeling: powerful, strong and joyous. I try to always be hopeful and envision myself healthy. I try to remind myself that there are always options to try new things and that healing is possible, as it has happened to me before. I have read so many stories of miraculous healing. I want to believe in a full recovery, but it isn’t always possible as acceptance interrupts that experience. When I try a new treatment, and it doesn’t go as well as I had hoped, it is devastating. I’ve put so much effort, time, money and hope into every treatment I’ve tried. I feel as though I have betrayed myself by being so hopeful. This is the point that a practical voice of acceptance pops into my mind, reminding me that this is the process of chronic illness. I won’t get better over night. There are no quick fixes. There isn’t just one treatment that will heal me. During this process of acceptance, I rarely feel hopeful or powerful. If anything, I feel the peace of a break from trying so hard to get better. During this time of acceptance, I focus on what I have that is good and enjoy the days where suffering is tapered. I understand the benefits of both hope and acceptance. Hope is an energizing and empowering belief of a better future, and acceptance provides peace in the current situation. Being chronically ill means shifting sometimes abruptly between the two. It can feel like a crash from a beautiful high to a realistic contentment, but I guess that is just the process. Perhaps the transition is never smooth, as its usually a loss or disappointment that sends me from one experience to the next. I think it is possible to be both hopeful and accepting of illness. It is just challenging to do so at the same time. Now I try to balance between hope and acceptance of illness. When I am trying a new treatment approach, I dive head first into being hopeful. I let my imagination run freely thinking of how good it could be to not suffer from symptoms or sacrifice beloved activities to recuperating. If things don’t work out with a planned treatment, then I allow myself to rest in the peace of “what is.” The truth is that there is always something good in my life despite suffering. I can focus my attention on “what is,” such as, a sunny day, the funny way my cats play together, the pleasure a of a home-cooked meal with love, etc. To me, that is the balance between hope and acceptance: believing in a better future and appreciating the life that I do have in the meantime.

Hollie Butler

How I Compare Chronic Fatigue Syndrome and Depression With Art

I see a psychiatrist once every couple of months to get medication for anxiety disorder. Inevitably we end up talking about everything happening in my life, including my coping with chronic fatigue syndrome (CFS). During these check-ins, she will frequently point out that many of the symptoms I talk about in having CFS are also signs of depression. Fatigue, exhaustion, weariness, exercise intolerance, difficulty sleeping, difficulty concentrating. Those are all things that can come with depression. I’m aware of this, believe me. I had a very serious depression in my early 20s. I remember it well, so it’s sometimes frustrating to constantly reassure caregivers I know the difference, and I need them to see me accurately. Why is this important? Because accuracy in diagnosing mental health conditions is just as important as accuracy in diagnosing anything else. It affects what drugs you’re offered, what care you have access to, and whether and if you get better. Part of the issue that comes up with a CFS diagnosis and management is how many patients are initially told they’re just depressed, and that depression meds are all they need. This lazy and careless handling of CFS patients has caused a great deal of damage. We need to work harder at understanding the experience of CFS – whether a patient’s experience includes depression, or doesn’t. This is how I explain it to friends and family, and how I explained it to her today. “It’s like if your mood is a canvas,” I said. “Every day you wake up, and your canvas is blank. A fresh surface to paint upon.” “By the end of your day, it’s full of imagery based on the feelings and experiences you had throughout your waking hours. Maybe a difficult interaction with a co-worker leaves a dark and brooding bit of color in one corner. Maybe a phone call with great news leaves a bright splash of color. Maybe the rest of your day was pretty average, and your canvas has a big swath of neutrals through the center. You wake up the next morning and the canvas is mostly blank again. Maybe a few things carried over a bit, but mostly your options are open, your potential for anything is back again.” People always get this, it intuitively makes sense. I continue. “OK, so depression, for me, was waking up every day and my canvas was already black. Before the day had even started, before I’d had any experience to warrant a black mark, my canvas was already covered in black. I would spend the whole day just trying to overcome that, to feel anything other than what was already there. After a time, I only had energy to live with it.” Usually heads are nodding by this point. Depression as a thing you carry with you, as a thing you can’t control, an inescapable weight. This makes sense to most people. But nowadays, here’s where I veer off: “Chronic fatigue syndrome, for me, is different. I don’t wake up to a black canvas. Instead, I wake up, my canvas is fresh and ready to go, but…I only get two colors. Before I was sick, I had access to a rainbow. A rich, complex palette of experience. These days, I get two colors. One is the color of fatigue, the other is pain. Everything in the whole day is filtered through fatigue and pain, and by the end of the day, that’s what I see. How much was I able to do through the fatigue and pain? How much was I able to feel through the fatigue and pain? Every color the world tries to add to my canvas gets fatigue and pain mixed in with it, and most of the time, I can’t see anything but those two colors.” Today, she got it. She finally understood. It was such a relief to feel like I’d finally hit on the image that made it clear. It’s this reality that I’m grieving. This is why I “seem depressed” to a person seeing me every couple of months, like my psychiatrist. To my therapist, who sees me once a week, it’s clear that what is happening is not a depression coming in and making it so I don’t want to live my life, but CFS coming in to steal the life I very much still want to live. I still make lists of things to do, both mundane and adventurous. I still go to Antioch’s website frequently and dream about finishing my degree and someday having the professional life that so many of my friends enjoy. I get teary when I talk about selling our little sailboat because all those adventures I’d dreamed of are still very much a part of what I want, crave and pine for in my life. And for many other things, I still want, I still crave, I still pine. The problem is, the energy to get those things just isn’t here anymore. I needed her to see the difference. Finally, she did. The superstitious part of me needs to end this by explaining that, in clarifying the difference between depression and grief to my psychiatrist, I am by no means saying I’m somehow immune to depression. It remains a big fear of mine, and it’s unfortunately very realistic to be concerned about it recurring. I keep a sharp eye on trends in my mood, and have a health journal where I record what I’m noticing. When I’m really down, I ask myself questions used to diagnose depression, as a way to get perspective on what I’m feeling, and to know whether it’s approaching the red zone. I also regularly ask that my family members be aware of depression signs, and to reflect back to me what they see, in case I’m viewing things inaccurately. Finally, of course, my therapist who sees me weekly talks with me about anything he notices. We stay on the lookout, but we don’t dwell on it. We want to hear your story. Become a Mighty contributor here .

Making My Invisible Illness Visible Through Makeup

I undertook a creative project that depicts the disparity between how one feels living with an invisible chronic illness, versus how imperceptible that experience is to the outside world. This incongruence presents many unique challenges that can often confound life with a chronic illness. This is especially true of the unspoken and spoken expectation that if you look good, you are feeling good. Invisibility is a double-edged sword. There are many benefits to invisibility. It maintains privacy about the health struggles I’m having. Disclosure of them are within my control at all times. On good days, I seamlessly blend into the world. On my bad days, I conserve a lot more energy for myself. Invisibility is also harmful. It means my true experience is not known. If my struggles remain unseen and unheard, authenticity – which is essential for all healthy human connection – is lost. On bad days, my suffering is rendered even more invisible. If I’m not physically out in the world, no one knows I even left. Breaking Through Invisibility The first step is vulnerability. Disclosure is inevitable. Whether it be through requesting special needs, or opening up and sharing my experiences – disclosure always invokes anxiety. This anxiety stems from fears of being misunderstood. These fears are from years of being misunderstood. Firstly, invisible illness can be met with skepticism or doubt… “You look really great, you don’t look sick at all.” “You’re too young to be sick.” …your suffering trivialized… “I’m tired today too, must be the weather.” “Why don’t you just drink coffee?” …your disclosure met with stigma and shame… “That’s not a real disease, it’s just a waste bucket disease.” “So you’re just going to give up on your life then?” … blame… “If you just got out of the house and went for a walk, you would feel a lot better.” Don’t get me even started on the recommendations. You can see why invisibility feels so safe. A safe harbor from the siege of ignorance, however well-intended. Conversations do not begin with invisibility. Change cannot be born there. The potential for change can only be found with visibility. To be vulnerable time and time again there. To continue these conversations time and time again. Until eventually, not one chronically ill person feels uncomfortable when they need to use that disability parking space, elevator or priority seating on a bus. Invisible illness is everywhere. It’s been everywhere before you and I. It will be everywhere after us. Our experiences are woven into the same fabric of life as the healthy, and will always be. It’s time we feel apart of it. The main message of my creative project was this: Our diseases may be invisible, but our experiences are not. We want to hear your story. Become a Mighty contributor here.

Mother's Guilt Because of Illness on Mother's Day

Mommy guilt… I think we’ve all felt it at some point! Mothers with chronic illnesses may have an extra layer of Mommy Guilt: We feel guilty about our illness and wonder how it might be affecting our children’s well-being. This Mother’s Day, I want to encourage “sick mommies” to remember: We still have a lot to offer our children! I hope my story strengthens your spirit. Sometimes I get lost in grief, when I think about the type of mother I can no longer be. Before, I was an active and sociable mother. I went on long walks with our little man almost daily. My survival mantra? Get out of the house in the morning! While our son tirelessly climbed and swung and slid at the playground, I would chat with the other moms. We’d have a laugh and moan about the “joys” of motherhood: the sleep deprivation, the toilet training, the vomit episodes, the public tantrums. It was so therapeutic! We’d share snacks and lend baby wipes. We’d laugh at the cute things our kids said and did. The camaraderie buoyed me in those first years as a mum. And all those sunny days I spent outside with our little boy… Some of the happiest days of my life. Ruth and her son. Before, I was a working mother. Returning to work part-time when our son was a toddler gave me a sense of accomplishment, and even (dare I say it?) freedom. Who would have thought that going to work could feel like a welcome break?! But I still remember the thrill of seeing the little guy again at the end of the day. Bliss… Pudgy fingers reaching towards me as soon as I enter, like petals opening in the sunlight. I’d grip him in a bear hug until he could hardly breathe, overjoyed to see him again. My work also supplemented our family income. The five-year plan was to move to a “family home” once child number two came along. So much for that plan! I got sick two weeks before our second child was born. Oh, how “our future” has changed! Now I’m a mother who spends most of her time at home. Alone. Resting. Carefully pacing my physical and cognitive activity in order to maintain homeostasis. Do too much and I can be sick for days, sometimes weeks or months. The social isolation has been perhaps the most grueling aspect of life with a debilitating neurological illness. Typically I am brimming with motivation, but I lack the physical capacity to do the things I love. When I am well enough to briefly leave the house, there are no outwards signs of illness. I look fine! Understandably, it’s very confusing for people. They say well-meaning, “encouraging” things like, “You look well! Are you getting better?” I suppose it’s a bit like a battery that’s flat: Put it next to a fully charged battery and there’ll be no visible difference. It’s not until you try using the flat battery that the difference shows. At a glance I look well; spend an hour or two with me and my illness shows. Now, I’m neither a stay-at-home mom nor a working mom. I’m not even capable of being a proper housewife ! Oh, how I mourned this loss of identity in the early days of illness. My husband, and the kids’ grandparents, were burning themselves out while I lay in bed longing to be more “useful.” An aching, toxic guilt slowly smothered my spirit. Having our kids spend most of their time away from me was certainly not part of the plan. I yearned to spend time with them, like I had with our son when he was small. I even missed the less-pleasant tasks we used to do together, like grocery shopping! Lying alone in an empty home day after day, being sick year after year, I felt cheated. This illness was stealing from me the precious years-you-can-never-get-back of their infancy, and I was powerless to change it. I think I’ve cried just as many “separation anxiety” tears as our kids have, at daycare drop-off, since falling ill! My tears have just been less public. A Mother’s Day card made by Ruth’s son. But something beautiful happened last Mother’s Day, something that soothed my grief. It was a real turning point for me. Our son brought home a handmade Mother’s Day card from daycare. My heart throbbed when I read its sweet personalized message, dictated by our little boy (who indeed loved long cuddles on the couch) and typed by his caretaker. What unexpected joy this simple statement brought me! And what a relief when I remembered: No other woman loves our two kids the way I do. I am their one and only Mommy, the woman who cherished them before they were even born. I realized something else: I’d been allowing a sense of inadequacy to cripple my confidence. And that toxic guilt steadily gnawing away my joy? I saw just how unnecessary it was — I hadn’t chosen to be sick! Gradually, and with professional help, I was able to acknowledge the terrible reality of my losses, while also gaining a new perspective on my “new” life. So, yes, our children do have a sick mother, but they also have a mother who loves them with her whole heart. She may not be with them all day, but when she is with them, they get cuddles and kisses galore from a mommy who’s relishing these early years — when kids love all that attention! A mom who makes them feel cherished and wanted… What else does a small child need? Our children have a sick mother, yes, but they also have a mother who always aims to be consistent and “present.” She has set up morning and evening routines at home, to help the kids feel secure. She comforts when they’re frightened or sad; she coaches when they’re angry or sulking; she lets them be silly and totally wild sometimes. Yes, it’s done in very small snippets, usually from the couch or the carpet where she’s reclined, but that’s good enough. A mom who does all she can to meet her family’s emotional needs… What else does a small child need? Ruth and her daughter. Our children have a sick mother, yes, but they also have a mother who seeks help when “believing in herself” and “positive thinking” simply aren’t enough. Life will throw many challenges at our two children — life does that to every human being! I hope our children might be strengthened by my example. No, it’s not the example I would have chosen. Before getting sick, I wanted to be the hero of their story. I wanted to model a strong work ethic and an active lifestyle. I wanted our daughter to see in me a woman being more than “just” a wife and mother. Well, that’s no longer the example I can set — I’m not even in the running for the Superwoman or the Supermom titles! But I can still be an example to them. I can model one of the most valuable truths in life: We don’t thrive on our own strength alone; we thrive in community. These days I’m a person who must rely on others to get through daily life. But isn’t that true of us all to some degree? We just may not like to admit it! With help from family, friends, and workers in our local community, we are thriving as a family despite my ongoing illness. A community of people working together, and weak-but-strong role models… What else does a small child need? So, I may not be the active mother I used to be, or even the independent mother I wish I could be. But I do know this: I am the mother our kids need me to be. And that has made me tearfully glad this Mother’s Day. “My mommy is the best because… ‘She makes me happy when I’m sad. She gives me cuddles.’” Our daughter is now old enough to understand Mother’s Day for the first time. I read that sweet quote in a daycare “learning story” just before publishing this post… What a perfect ending! Follow this journey on Fruitful Today. The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? 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.

Thank You Letter to Chronic Fatigue Syndrome

Dear chronic fatigue syndrome, I need to get a few things off my chest. First of all, you need to change your name. You have a confusing name. Life with you involves much more than just feeling tired all the time. Plus, your name doesn’t even have capital letters, but your acronym has extra capital letters: ME/CFS. The name needs to go. Secondly, my husband and I most definitely have not enjoyed your company over the past two years. You moved in uninvited, for starters. And at a most inopportune time: two weeks before our second baby was born. How rude, taking my mobility away at such a time! Caring for a newborn and toddler is demanding work. Our kids are now 2 and 4, and they don’t know life without you… Sick Mommy trying in vain to have a rest while the kids watch TV Thirdly, I don’t appreciate your invisibility. Sneaky and sly, you evaded medical detection for quite some time. I knew something was wrong, but had no name for my debilitating symptoms. Was it post-natal depression? Was sleep-deprivation making me this way? Terribly confusing. So even though I dislike your name, I’m sort of glad you at least have a name!  Now we know how to treat you. Lastly, you present me with a dilemma: I’m mysteriously contented. More contented now than I remember being pre-illness. Bizarre. Paradoxical. But true… I’m being forced to accept a much simpler life. Unfettered by my old “friends” – busyness, perfectionism and over-achievement – my spirit is thriving. I hesitate to admit this, for fear that you’ll mistake it as appreciation. I concede I’ve changed for the better during your time with us.  My tunnel-visioned, self-sufficient independence has given way to a more community-oriented interdependence. Our children are cared for by a small army – paid and unpaid – of loving people devoted to their well-being. It’s taking a “village” to raise our two kids. By necessity, not by choice (I do miss them). But I’ve been pleasantly surprised! This less mommy-centric model is actually working OK. The kids are resilient and playful and intact. I’m no longer terrified that you’ll destroy them. Again, please do not misconstrue this as praise, but our marriage has even grown since you moved in. I’ve become less nit-picky and less critical of my husband. You are such a truly awful pest to live with, ME/CFS. I’ve got bigger fish to fry with you around! Your presence has given me a different perspective on my husband. Who cares if he leaves his clothes on the bedroom floor and scrapes the margarine out messily and leaves cupboard doors open? He’s doing all he can to love us, while putting up with you, and that means the world to me. I’m more patient with him now. And kinder. And more trusting. He hasn’t changed; I have – for the better. Chronic fatigue syndrome, my life is now bare where it used to be blooming. I’ve lost my career. I’ve lost touch with friends. I’ve lost my social life, my independence, my mobility. I’m not the vibrant, active mother I set out to be. My short-term memory is worse than ever. I have become unreliable. (My poor husband!) I struggle to concentrate on simple things. But different parts of me are flourishing now. On a “babymoon” holiday, a few weeks before the virus that triggered ME/CFS knocked me out. Parts that were weak and neglected before have become strengths, even assets. I’m becoming a less self-absorbed, less opinionated person. I’m more grateful, calmer and more gentle. Yes, I still have days where it’s all too sad – the losses still overwhelm me sometimes. But I can’t deny the beauty that’s present in my “new” life. I’m growing. Is it because of you, or despite you? Or a bit of both? You really are an enigmatic character, chronic fatigue syndrome. Keenly unwanted and truly awful, yet at the same time, you’ve enriched our lives… I’ve got it! You are a bit like compost. Smelly, disgusting, putrid, rotting, nutrient-rich compost. A reminder that new life can sprout from unpleasant sources. Compost… That’s your new nickname. I like it better than your real name. Regards, Ruth Follow this journey on Fruitful Today.