drawing of woman in gold tones

To anyone who has ever said (usually with a slightly confused-sounding tone), “But you don’t look sick?”

You are right. Sometimes, I don’t look sick. In fact, sometimes I can look quite well. It even confuses me on the days when my face looks healthy, as often it is so far removed from how I actually feel in my body.

What you don’t see are the days and months where actually, I do look incredibly sick. Where there is no way to hide how unwell I feel and no amount of makeup can cover up my glassy eyes and yellowy toned skin.

These words and the ones I am about to write to you don’t come from a place of self-pity, but from a place of reality. A reality, that actually, millions of people are living, most of them behind closed doors. It’s something I think needs to be spoken about more openly to raise awareness of a condition that is so misunderstood.

Think of pain. Any type of pain. You can’t visually see it can you? Sometimes you can see someone wince in pain, or see the pain etched on someones face, but usually, it’s hidden. If you have a headache, it’s not visible is it? Perhaps think of a time you have felt emotional pain. Maybe cast your mind back to a time when you felt deeply hurt, anxious or heartbroken — could people visibly see it? During those times when you had to put on a brave face and step outside the front door, was how you truly felt on show to anyone outside of yourself? Not really.

Many of us are conditioned to hide pain. To hide suffering.

One of the reasons we do this is perhaps that it feels safer somehow, to keep it close to our chests, to retreat, to only let those who are the closest to us enter into this darker side of our world. It is seen by many as a sign of weakness to show suffering, to show pain, to show fear, when in fact, it is part of being human. No one has a life purely filled with light; darkness is as much a part of it all. It just can seem easier to only share the joy. The happy times. The success and achievements and milestones.

To keep ourselves safe and cocooned during tough times and put up a protective invisible guard around ourselves, can in some ways be a survival instinct to many of us. But it can also leave those of us with invisible illnesses open to so much misjudgment, misinterpretation and confused sideways glances due to so much of our reality remaining hidden.

Facebook feeds are filled with smiley faces and snapshots of happy moments, when in fact these photos are only the tip of a mammoth iceberg, underneath which the struggle and larger part of our lives remains unseen.

It confuses people. And understandably so. I would be confused if I was to glance over how my life may sometimes appear to an outsider or an acquaintance.

For months at a time, you won’t see me post on Facebook, and you won’t see me out and about. This is because during those times I’m housebound and encountering suffering on a level I didn’t even know was possible until this illness came into my life. I embrace the better days, just as so many others in a similar position to me do, because I want to lead as much of a normal life as I possibly can. However, just because I look OK on those days, it doesn’t mean than I am.

Seeing me in a shop looking happy and well could be a tiny percentage of that month. I will have had to rest before I left the house, and rest again when I get back home, but people don’t see that. More often than not, symptoms are hidden, and usually when I am out, I am enduring a fatigue so deep that it’s hard to begin to explain how this feels to someone who hasn’t experienced it. Makeup works wonders and the happiness that comes alongside a day where I can get out and about, sometimes after long periods of time at home, is what you may misleadingly see through the sparkle in my eyes.

I hate the judgement and misunderstanding that can come alongside this.

When you are living with a chronic illness and glimpses of better days come along, you just want to try and enjoy what you can and distract your mind from what is going on inside your body. In an attempt to have some sort of normality on those days. Your pale face, is covered up. The spaced-out, exhausted feeling that never leaves you is disguised through experienced practice, and the crushing feeling and urgency to go home and lay down isn’t seen, because it’s not until the last minute when we excuse ourselves and leave the room when this would even be visible to an outsiders eye.

The background feeling of uncertainty and distrust in your body due to the sheer amount of times it has crashed and relapsed and let you down over the years is something people aren’t even aware of. The trepidation you can feel on a day-to-day basis, and the sense of vulnerability that comes from living in a world that often resembles a roller coaster, as well as the isolation and the continuous wondering if life will ever be “normal?” All hidden.

I have done so much work on letting go of what others think, but it doesn’t mean it still doesn’t get to me from time to time. It doesn’t mean I’m not aware that I often look perfectly fine. That my face very often does not actually match up with what is going on inside my body. I write this as much for anyone else in this position as much as I do for myself. People with invisible illnesses, whatever they are, deserve compassion and understanding, be it myalgic encephalomyelitis/chronic fatigue syndrome, Lyme disease, depression, multiple sclerosis, cancer (yep, even cancer can be invisible. My dad passed away from cancer last year, and it wasn’t until the very latter stages you would visibly know anything was wrong with him).

Bear in mind, that the days when we do look incredibly sick, and trust me there are plenty of those, are often the days we are at home. Sometimes for months or years at a time.

On closing, one last thing I’d like to say, is that many illnesses, such as ME/CFS, can fluctuate massively. These fluctuations, sometimes happening on a day-to-day basis, sometimes over years, can be confusing. I had a period of time in my mid-20’s where I could work and lead a relatively normal life. Yet I spent the most part of 2010 to 2012 unable to leave my bed, tolerate external stimulus or care for myself.

My intention as I write this is to just gently open the eyes of any of you who are a little confused by my face that sometimes looks quite well. To ask that if you know someone, who is suffering with an invisible illness, show them some love, some kindness and a little understanding. Don’t be so quick to judge. So often, people are fighting battles we know nothing about, and that goes for all of us, not just those who are chronically unwell.

A smile and a flick of mascara, on one of the better days, can cover up a whole world of hidden depths.

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It’s difficult to truly understand what chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is like unless you live with it yourself. Within the CFS/ME community, you’ll find millions of people who completely understand the unique frustration of not having the energy to shower, and can empathize with the fact that “just get more sleep” isn’t very helpful advice.

We asked our Mighty readers with CFS/ME to share the truths you’ll understand if you live with the condition, too. If you can relate to these, know there’s an entire community out there of people who know firsthand what you’re going through.

Here’s what the community told us:

1. “‘I’m exhausted’ isn’t an exaggeration. It’s legitimate exhaustion to the point of nausea and shaking. A nap won’t fix it.”

2. “I’m not lazy. I’m constantly in a fog I can’t escape from. It doesn’t even matter how many hours of sleep I get, I never wake up feeling fully rested.”

3. “It isn’t our fault that we don’t have the energy to do the same things you do… And no, sleep will not help!”

4. “Taking a shower can be an absolutely exhausting endeavor.”

5. “Fatigue and being tired are two completely different things. Healthy people usually think they’re the same. I’ve often talked about being really fatigued and gotten the response, “Yeah, I’m really tired, too.”

6. “The disoriented sensation of physically being somewhere but mentally being up in the clouds because you’re just that tired.”

7. “It’s easier to eat something while standing in front of the refrigerator because walking across the kitchen and collecting proper dishes and actually heating something is too exhausting to even fathom doing.”

8. “Guilt – there is always that feeling of ‘I should be doing —’”

9. “The name is completely inappropriate. ‘Feverish, sweaty, palpitations, dizzy, feel like boiled over crap, exhausted, allergic to everything, insomnia city, weak-as-a-kitten, inflammation town, bla bla bla disease”… Is there an acronym for that?”

10. “Netflix saves lives.”

11. “The concept of ‘pushing past/pushing through’ your limitations no longer applies to you. Our bodies don’t work that way.”

12. “The frustration that comes with random people messaging you trying to sell you a vastly overpriced vitamin supplement with the promise to cure you because it ‘cured’ their *insert relative here* of their chronic fatigue.”

13. “How happy you are with only one small accomplishment each day that to others would seem trivial.”

14. “Just because I can find the little spark in me to do the things I love doesn’t make it any easier. It just means days of downtime to repair my body from all the energy I used trying to be fulfilled and happy.”

15. “It isn’t all in our minds, despite what people may think.”

16. “Some days it feels like I am walking through wet sand up to my hips and I have concrete blocks on my arms and legs! It is not a ‘tired’ thing, it’s a pure and total exhaustion!”

17. “Anything is a lean-able surface if you try hard enough.”

18. “I am not ‘lucky’ to nap during the day. If you think that I am, you don’t understand chronic fatigue.”

19. “Having energy and stamina is not a matter of will. If we could will ourselves to feel better we most certainly would. Just like you cannot will away a flu or a headache, we cannot will away CFS/ME. And trust us… we have tried!”

If you have CFS/ME, what’s one thing you know to be true? Share in the comments below.



19 Things You Know to Be True When You Have Chronic Fatigue Syndrome

For such a long time I had no idea why emotional situations made me sick. And not just your typical exhaustion after a shouting match, but an actual ill feeling that would last long after the emotions went away.

I now know one of the hallmarks of my myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the disease I battle every day, is my alarmingly low amount of cortisol, a hormone essential to how the body reacts to stress, including blood pressure and immune responses. This, among other near non-existent hormones in my body, makes it almost impossible for me to be fully, if at all, present in any given situation. Whether it’s a hostile argument or a lust-filled kissing session, I feel the emotions these situations conjure so intensely, my body often can’t process them. Instead, it panics — my heart rate soars past its anaerobic threshold and a band of extreme nausea, muscle pain, and sensory-sensitivity sends me crawling into a fetal position.

This has happened countless times since I first got sick in 2010. Over the years I have learned how to detach myself from people and situations because I simply cannot process the emotions they create in my body. To those unfamiliar with ME/CFS, I imagine this may sound like a simple process — things get emotional, then I flip a proverbial switch so I don’t feel mad or sad or anxious or any other emotion. But in reality, it’s much more complicated and often painful.

Before getting sick I was never one to shy away from emotional situations. In fact, I often embraced them instead of hiding my feelings. I’ve always been someone to talk things out and express myself, at times perhaps too much. Nonetheless, this is the type of emotional and sensitive person I have always been — a person I’ve always been proud to be.

One of the first memories I have after getting sick was having to suppress my emotional side. I was robbed of my emotions, but not in their entirety. To this day I still feel, I’m still human, but my emotions are now tainted by an evil disease. Any catharsis of anger is immediately thwarted by a slew of symptoms. Any elation from excitement or euphoria from pleasure is smeared by a sinister malaise.

Even after the acute phase of the illness, I found myself unable to cope with stressful and emotional situations. The most dramatic example was after my nephew, Thomas, passed away a week after his birth. I remember riding to the hospital, tears deluging from my eyes, my face bubbling with emotion. Within minutes, I felt the physical effects of an emotion overload. Later that night I got home and my body crashed from all the emotions. Sure, the physical exertion of walking around the hospital that day made my symptoms worse, but it was the emotions pulsing through my body that sent me over the top. I spent days in bed recovering.

Perhaps the saddest part of getting sick from experiencing my emotions is having to decide whether feeling — raw emotion — is worth being ill. So many times I’ve been faced with a dilemma of whether to fully experience situations and the emotions they create, only to deal with the physical consequences, or to withdraw and detach myself to preserve what little health I have left.

A few weeks after his death, my family and friends gathered to celebrate Thomas’ life. The dilemma was never more evident for me. Everyone in my immediate family got up to speak at the ceremony, but when the opportunity was presented to me, I just couldn’t do it. I’ve always regretted not saying anything. But as painful as my remorse has been, I know I made the right decision. I know I would have made myself so incredibly sick by speaking at the ceremony. The physical exertion of standing for an extended period of time, mixed with the cognitive struggle to piece together coherent sentences, on top of the emotional toll from my nephew’s death and witnessing the heartbreak of my sister, would have put my body in an emotional state it couldn’t have afforded.

I have, unfortunately, had to learn this lesson the hard way through trial and error. I have essentially taught myself how to survive and cope with my lack of vital hormones by avoiding them whenever possible. In many cases, my decision to detach myself from an emotional situation comes down to factors like the severity of the physical repercussions I will endure afterward, as well as how important the situation and people involved are to me.

It’s not that Thomas wasn’t important to me, it’s that he was so important to me the reaction his death created in my body was unbearable — not detaching myself in the way I did would have been catastrophic. At the time, it was a heartbreaking reality to face, one I inevitably had to suppress in order to protect my physical and emotional health.

Some people may wonder why I haven’t tried medication to replace the hormones I lack. Well, I have. I take hydrocortisone to boost my cortisol levels. Unfortunately, the dose I take only elevates my cortisol for a few hours, then it drops dramatically. When I increase the dose, for whatever reason, my body simply does not react well — I crash for weeks. I have a similar reaction to fludricortisone, and most recently, midodrine. So it’s not like I haven’t tried to fix the problem. At this point, I have to hope my cortisol, and other deficient hormones, returns to normal levels naturally, because experimenting with new medications is even more dangerous for me than putting myself in an emotional situation without vital hormones.

I hope, one day, my body will be well enough to revisit the many events and people from whom I have had to detach. Then, I will be able to process them in a healthy way, not neglect them.

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A short awareness video explaining the differences between chronic fatigue and tiredness.


I wake up, dizziness, a storm, gathering strength behind my eyelids. I can tell it’s going to be a bad day. I consider reaching for my phone, turning on my meditation that urges “my cells to heal my body” but I don’t quite have the will for it.

My children pitter-patter into my room. “How you feeling, kid?” my 3-year-old daughter Paige asks, climbing into my bed. She loves to pretend that she’s the mom and I’m her baby. We never played this game before I got sick and a little voice in my head whispers that this role reversal isn’t normal creative play, that it symbolizes my failure as a parent. Paige brushes my hair out of my eyes, before ordering me to, “Give your mother a kiss.”

My 5-year-old son Ethan picks up my pill case of the nightstand, pops out today’s dose, spilling them into my palm. “Here’s your get-better-medicine, Mamma.”

I cuddle them close, trying to make this moment count. They start telling me about everywhere Daddy’s going to take them today: Trader Joe’s, the zoo and maybe for pizza. They sound better than my plans which are: TV, sleep, contemplating a shower.

Later, when the slamming of the front door announces their departure, it feels like a layer of my skin has been stripped off. Alone time used to be a luxury, but since chronic fatigue has taken hold of my cells, pushing me out of my life, it’s fallout, an ugly necessity.

My children have been gone for a few hours when my husband texts me the first picture – the kids on the bug carousel, their smiles huge half-circles. Then every 20 minutes or so, I get another one comes until I turn off my phone. I know he’s trying to make me a part of their day but I can’t get past the fact that I’m not in a single picture and I don’t know when I will be again.

I first started feeling tired a year earlier. “Well, you’re a mom with two small kids,” other people said. “We’re all tired.”

But I knew that wasn’t it. My exhaustion permeated my bones and my head constantly felt like I’d just stepped off a carnival ride. I hopped from doctor to doctor and diagnosis to diagnosis: thyroid, vertigo, autoimmune issues. I took medication, went to vestibular therapy, did elimination diets, added supplements, and had acupuncture but I just got worse. The term chronic fatigue syndrome, or myalgic encephalomyelitis/CFS, started popping up. I didn’t want to claim it because it was one of those things that no one understood and no one could fix, like colic for adults, but with less hope of growing out of it. But month by month as I was able to do less and less, I wasn’t sure what else to call it.

Through Facebook, I connected with a friend of a friend who had been dealing with this for years. I read the articles she posted about advocacy for research, watched video clips showing “The Millions Missing,” showing the struggles of some of the estimated 1 to 2.5 million people pushed out of their active lives by this disease. We texted occasionally but I was afraid to call her because it meant acknowledging this diagnosis was mine. But finally one school vacation when I had to go to my mom’s for help with the kids because I was too weak and dizzy to get out of bed, I called.

We spent the first portion of the call, talking symptoms, supplements, the known and the unknown about the disease, but it wasn’t enough. I wanted her to tell me how to live with waking up each morning having your first breath end in a yawn and your muscles feeling like they’re caked in cement, to have the thought of walking three blocks to pick-up your child from school make you want to curl into the fetal position while the walk itself makes you collapse on the couch with barely enough energy to pick up the remote and turn on “Peppa Pig.” Most of all, I wanted her to tell me how I deal with the fact that I’m slipping out of my children’s lives.

“I hate that I can’t mother,” I lamented to her. “Their lives are going by without me.”

“You can mother,” she said. “You’re just mothering differently. You’re doing everything important.”

I didn’t believe her but I repeat her words daily anyway, swallowing them along with my stack of pills. I repeat them when Ethan begs me to go for a walk around the block until Daddy comes home. I repeated them when Paige cries because I’m supposed to be parent of the day at her playgroup but have to ask a friend to step in for me. I breathe her words in and out like a mantra as I pull my children onto my lap, asking them to tell me about their day, trying to weave my presence into their existence, even if after the fact.

I can’t say that I’ve found peace, because I haven’t. I hate this disease that has lay waste to my body and to the mother I thought I was. But I will not let it destroy the fierce kernel of love in my soul, will not let the loss of part of my identity, eviscerate the rest. So, I work my hardest to focus on what’s still there, like making up oogly-googly stories with Ethan and bunny foo-foo and fa-fa stories with Paige, kissing Paige until she laughs so hard she starts to cry, helping Ethan sound out the “letters of the week” while we cuddle on the couch.

I haven’t given up faith that I’ll get better. But if I don’t, I hope this is what they’ll remember – how my love was so powerful it exploded out of my pores like sweat, how I listened to every word about their day, how we created magic worlds with words, called out karate commands and dance moves and told knock-knock jokes that made no sense, even if 90 percent of it was from my place on the couch, my head resting against a stack of pillows.

Because I am mothering. I am. I’m just mothering differently.

This blog was originally published in Mothers Always Write.

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Lead photo by Thinkstock Images


Since being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, “tired” has become one of my most commonly used words. It’s a word we all use. Everyone gets tired. Whether it’s at the end of a busy day or as you drag yourself out of bed early in the morning, we all experience it. But the more I use the word the more I realize that what I mean when I say it can be very different to what other people mean.

For me it has almost become a code word, or shorthand, for the millions of other words I keep trapped in my mouth. It’s as much about what I am not saying as what I am saying.

To me those five letters are so much more than an adjective. It’s the ache in my muscles that weighs down my body until it feels almost too bruised and heavy to move. It’s the sadness and guilt I feel when I have to cancel something I really wanted to do. “Tired” is the thing I see when I look in the mirror. It is the paleness of my skin and dark circles around my eyes. “Tired” is the darkness and weariness that sometimes creeps into my spirit, making me wonder how many more days like this I can take.

When I say, “I’m tired,” I mean this day will be hard. I will ride the roller coaster of being happy one hour and sad the next because my emotional regulation has given up and gone home. My head will be filled with a fog so dense that forcing my brain to concentrate feels like a particular kind of torture. I will be irritable and say things I don’t mean; the words I want to say will get mislaid somewhere between my brain and my mouth. I will be endlessly frustrated with myself and my inability to “cope better,” when really I am frustrated with the direction my life has taken.

“Tired” is the black hole I am being perpetually pulled into. The opponent I have to fight, who has a fondness for changing the rules of the game whenever they feel like it. It haunts my good days and my bad days. It is the monster I will sometimes let you catch a glimpse of, but will mostly keep hidden away. Some days I worry it is all I am and ever will be.

But while “tired” is more than a word to me, I am also more than those six letters.

I believe I have a value that comes not from what I do or how I feel, but from who I am. I have no less worth on the days I can’t get out of bed than on the days I can pretend all is well. I am a daughter, a sister, a friend and I am loved. I am creative, clever, empathetic, thoughtful and strong. I am so many other things before “tired.” There will be days when I will need reminding of that fact.

I may be tired today, but I refuse to give up on the hope that tomorrow will be better. Maybe there will come a day when energy is no longer a distant memory.

In the meantime, I still have dreams to chase. I’m not done yet.

Follow this journey on Hope Whispers Today.

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