oil painting of woman standing on street holding umbrella

On the surface, I look like I have come to terms with my chronic illness diagnosis. I have learned how to advocate for myself and found words to explain my illness to those around me. I have found some ways to cope and am adapting  to live my life around it. However, there is one part of accepting my illness that I am still struggling with.

I am finding it hard to accept that it is not my fault.

I know I am not supposed to blame myself. I would never dream of blaming someone else for their illness. I would be the first to correct anyone else in my position. I know the blame I carry is neither rational or justified. So why can’t I shake the feeling of guilt?

Having a chronic illness feels like being set up to fail, and I have never been very good at failure. A diagnosis doesn’t come with an instruction booklet. No one tells you how to manage your days, what to do and what not to do. But people around you expect you to have all the answers. It’s like being forced into a tournament, but no one will tell you what game you’re playing or what the rules are. Every time you think you’ve got it and start to believe you’re winning, the rules change and you’re back to square one. And it seems you are only competing against yourself, the better, healthier version of yourself, trying to get back to who you used to be.

Yet even my best efforts cannot keep my symptoms at bay. A good day for me is still not as good as I or others would like it to be. I am learning to cope by trial and error. And a year post-diagnosis it still feels like my errors are more noticeable than my successes.

I blame myself for the days I don’t succeed in managing, thinking,
“Surely by now I should have got to grips with this.” I feel responsible for every day off work, every canceled plan, every time I hibernate and abandon communication. I feel guilty for the times I push myself too far and experience the inevitable crash. Or for the days when perhaps I could have pushed myself further but was too afraid of failing. I blame myself for every missed target at work. I am critical of every time the brain fog rips my
concentration to shreds. There seems no one else to blame when every change or concession I make, yields no improvement. I am constantly comparing myself to everyone around me and finding myself lacking.

It doesn’t help that I have an illness that has become increasingly shrouded in controversy. Half the medical community still seem determined to treat myalgic encephalomyelitis as a mental illness. It is an illness still so poorly understood, under-researched and under-funded, despite the thousands of people affected. Whilst there have been some advances in research to show a biological basis for this illness, this is having little impact on local treatments options.

There are still many doctors who would dismiss me with “it’s all in your head.” My diagnosis came with a course of cognitive behavior therapy, and once that is finished there will be nothing else they can offer me. They believe my debilitating fatigue is a result of my body being de-conditioned, having too much rest and unhelpful thought patterns. I worry how many people in my life think the same. I am being taught not to trust what my body is telling me. It’s hard to know who I am supposed to be listening to.

In such a climate, it is difficult to validate your feelings and to ask for the help you need. I can fall into the trap of over analyzing every feeling, to fear I am misinterpreting every ache and pain. I would give a great deal of money to swap bodies with someone else for a day. I long to have someone else confirm my experience, to see my illness through their eyes. And I would love to remind myself of what healthy feels like, to experience a day without fatigue. It has been so long now that the goal, of a healthy life, gets harder and harder to picture.

I don’t know what the road ahead looks like. The future has become hard to predict. Some days it feels like improvement is just around the next corner, other days it could be a million miles away.

The truth is I am so very tired. I know I am carrying a weight too heavy for my weary body. I cannot do anything about my diagnosis. But I think it is time to learn to lay down the burden of guilt and blame that is pulling me to the ground.

I know it won’t be as simple as saying a few significant words and leaving that suitcase of guilt behind me forever.  I know every time I set it down I can choose to pick it back up again. Maybe it will always be there, tempting me on the bad days. However, at those moments I will try to hold out kind and compassionate words to myself, rather than blame. I am human and flawed, I will make mistakes and get it wrong. But every fall will be a chance to get back up and try again.

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Those of us with chronic illness are often forced to wage two wars at once. Not only must we cope with the immeasurable impact of our illness, but many of us also face the burden of skepticism from peers, the medical community, friends, and even family. If you’re anything like me, you’ve spent an unfortunate number of hours banging your head against a wall metaphorically (most of the time) trying to convince others that the nightmare you are going through is very, very, real.

My illness is invisible. It is called myalgic encephalomyelitis (ME), which is a chronic neuro-immune disease that causes a wide host of unpleasant symptoms, with extreme exhaustion that does not improve with rest being the main hallmark.

It has taken me two years to receive a diagnosis, and even so, this disease is still not widely respected by the medical community. Although times are changing with the emergence of new research that shows us how patients with ME have metabolic differences compared to healthy controls, this disease is often thought to be psychiatric in nature, or a “fake” disease that gives patients an excuse to be lazy.

This misconception could not me more ridiculous and wrong. There is no on and off switch. There is no “snap out of it” or “try harder.”

In an attempt to have the normal 20-something experience, I downloaded Tinder. Man, I wish I could copy and paste some screenshots of the conversations I have had as they perfectly sum up how alien I feel in comparison to others my age.

As I was scrolling through the profile pictures, these people were more often than not rock climbing, river rafting, or posing with some exotic animal on a safari trip. I was exhausted just from swiping right or left. Although I don’t like to talk about my illness (especially to those I am just getting to know), oftentimes it is hard to avoid it because it has become the 50-ton elephant on my back for three years. It has prevented me from going to school or having a job, let alone posing to take a selfie with a tiger in the jungle.

When these people on Tinder would ask me my backstory, or what I’m up to currently, I sometimes default to my go-to line: “I just took some time off of school to deal with some things that have come up.” If the conversation continues, I often am pressed to be less evasive. I was talking to one guy on Tinder, and explained a little about being struck down with an illness. His response was, “Oh man that sucks, if that happened to me, I would just work out, eat tons of protein bars, and think as positive as possible. Positivity could cure anything.”(Damn dude, you should write a book. That’s some ground breaking stuff.)

Although I am sure these comments only have good intentions, they tend to only extenuate my feelings of isolation and invalidation. What I read in between the lines, is “You’re not trying hard enough to overcome this.” In turn, I begin to second-guess myself. Am I not giving this my best shot? Am I weak? Perhaps I am not being positive enough after all, or not pushing myself hard enough. As soon as I push, I am violently jerked back into my reality. This is not a problem that positive thinking and granola bars can cure on their own. Every physical and mental activity is that much harder, as it feels as though I just downed a bottle of Nyquil, only got eight minutes of sleep, all while having the worst flu imaginable.

Lately I have learned to expect the slew of “try harder” or “you just need to have more fun” comments for my peers, and I no longer think too much into it. Unless you are going through it yourself, it almost impossible to understand the complexities of a chronic invisible illness striking you down at age 20. However, I do not expect this treatment from my doctors.

A few weeks ago, I was referred to a neurologist. After I explained everything to him, I was shocked at his response. My doctor was no better than some of the guys I was speaking to on Tinder.

In response to my years of struggling, he told me I was an “attractive and healthy young girl” and perhaps I was just lonely. Maybe it would pick my mood up if I had a cute boy to take my mind off things. I was appalled.

Not only is this treatment sexist, but it is belittling. He had only just met me. He had no right to minimize my years of suffering by telling me it could easily go away if I just swiped right on the perfect man. He had no idea how much I try to push myself beyond my limits.

Comments like this do way more harm than good. This treatment is so 1950s. This erodes the sense of trust between doctor and patient, and makes this patient feel even more ostracized and invalidated. I am secure enough to understand this is not all in my head, but another patient may begin to second guess herself. She may leave that doctors office with a sense of guilt that she is not trying hard enough, and in turn push herself dangerously beyond her physical limits.

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Thinkstock photo by Dreamerjl83

When you have chronic fatigue syndrome (CFS), you don’t just feel “tired.”

The fatigue I experience hits me like a solid brick wall and quickly spreads over my entire body, leaving me with no energy at all. When I tell someone that I have chronic fatigue, they think I’m tired. I am often advised that I’ll feel better after a good sleep. But there are two things wrong with this statement.

First, I cannot sleep. One of the symptoms of my CFS is insomnia or inability to fall asleep. And I spend almost every night literally wriggling in pain and trying to sleep just for some time. Sometimes I don’t sleep at all, lying in the bed and clutching my body tightly because I cannot bear the pain. While other times, when I do fall asleep, it’s usually broken and disturbed.

Secondly, no matter how much I sleep (and I’m counting those rare good days when I get up to 12 hours of undisturbed sleep) or rest, I don’t feel better. The fatigue and exhaustion just never go. They cling to my body like my own skin and no matter what I do or how I do it, nothing seems to help. I feel like my limbs have heavy weights attached because when I try to move them, I can’t. Many times, my body just goes numb.
Crushing fatigue and pain shoots up my body and flows through my veins from morning to night.

It becomes difficult to even perform tasks like brushing my teeth and changing clothes.

But I force myself. I force myself beyond my capacity to at least manage to wash myself up every day.

It’s a strenuous task and it leaves me gasping for breath, extremely dizzy and in a lot of pain. Right now, I’m lying in bed, crying as I write this because I am in so much pain and I’m just tired. My arms hurt badly as I hold my phone in my hand and I cannot even use the speech-to-text option for typing because speaking makes me much more unwell.

It’s difficult to imagine how someone looking so well can be this sick. But this is the truth.

The reality of living with chronic fatigue syndrome is not a sleeping beauty spending a luxurious life in her comfortable bed.

It’s this — a normal girl with an ill body. A girl who is determined to live in spite of the challenges that come her way but, who is too sick to do it. I spend 95 percent of my time lying in the bed because I am too tired to get up. And when people see this, they tell me to “just get up and get moving.”

How much I wish that was possible.

Because if it were, I’d get up in a heartbeat.

I always force myself to do stuff. If I just listened to my illness, I’d be bedbound forever. And the very thought frightens me to bits. So I get up — no matter how painful it is. But what happens after that? I have to pay back, sometimes for days, sometimes weeks.
And the payback often includes even more fatigue and pain.

Chronic fatigue syndrome is a complex, multifactorial illness. It just doesn’t affect one part of the body. For me, its effects are worse on the gastrointestinal tract and the immune system. So, fatigue and pain aren’t the only symptoms I have. They are just the ones I choose to talk about in this post.

For different people, this illness can mean different things and it’s not necessary that if I have extreme pain, the other person with CFS has it, too. This is one of those illnesses that are often overlooked and not taken into serious consideration.

But behind closed doors, there are people — like me — probably like the one reading this — who struggle with the devastating effects of this illness.

And we are all trying to fight, with all the strength we can gather.

One day at a time.

One second at a time.

And we hope and wish for everyone to be kind and understanding and not dismiss our illness as “just tiredness.”

Find me @its_little_ayra on Instagram where I share the ups and downs of my chronic illness journey.

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As I waited in the examination room, my excitement grew about seeing one of the world’s leading specialists for my condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I had seen him six months prior and felt that we were finally ready to get down to the business of improving my health. I have been chronically ill for 10 years and, for five of those years, I have been undergoing intensive treatment for tick-borne illness. I felt excited about the prospect of having access to new treatments and being on the leading edge in this field.

Instead of hearing about the latest breakthroughs in ME/CFS research, my appointment focused on lifestyle choices and pacing. It’s no coincidence that many patients with ME/CFS have type-A personalities – hard-driving, ambitious, energetic, seeking. That was me, like so many others, before I fell ill. Although my illness has forced me to slow down substantially, I seem to have a high tolerance for feeling poorly and pushing through my symptoms. And the second I feel a little better, I am out trying to do as much as I can get done. Until I crash.

Learning to Avoid Post-Exertional Malaise

A hallmark of ME/CFS is a phenomenon called post-exertional malaise, or PEM. It is poorly understood, but people with ME/CFS (as well as many autoimmune diseases) experience a crash after engaging in physical, mental or emotional activity. The triggers differ for people and the activity is often decoupled from the crash by days sometimes, making it hard to know which types of activities lead to PEM.

My doctor told me that PEM must be avoided at all costs and that, if I do not, I would not get better, and even run the risk of getting worse. This is the first time during my chronic illness that a doctor has said this to me. If I didn’t get on top of PEM, he told me I could decrease my chances for certain drugs to work. He informed me that the hard part isn’t when patients feel very sick – those are the times when we are already in bed and resting. It’s when we start to feel better that the trouble begins. This happened to me this past fall – I started a new treatment but was still working part-time and, for the first time in a long while, I started to feel dramatically better. Despite my doctor’s advice, I treated this as a license to push harder and harder with each gain in my health. Naturally, I crashed and am at a much lower baseline and the medications no longer appear to be having an effect.

What if the thing hampering recovery from chronic illness is your personality?

I like to live life large, even in my much diminished capacity. I love people, ideas and places and gain great satisfaction from being deeply engaged with these things. I love to make people feel good and probably have the people-pleaser gene that seems to get passed down to many women. I love exploring the natural world even though I have not been able to experience it the way I like to for years. I love my work – teaching ecology and conservation at the university level. I love being a part of the community – volunteering in my son’s school, serving on boards, working with local organizations. I have cut way back on all of these things. But even my vastly shrunken world takes energy I do not have and most of the time I am pushing through, only to crash again and again.

I don’t yet have the answers to this predicament but suspect it has everything to do with how I frame the challenge. Rather than viewing it as a process of giving up my favorite parts of who I am, I am seeing that much of what drove me in the past came from some unhealthy places and patterns. As a chronically ill person, I can still show people that I care about them and make meaningful contributions to society. I can relax in the moment more than I do and discover who I am in those spaces. Instead of feeling sidelined by my illness and doing everything I can to preserve the last vestiges of life as I knew it before falling ill, I can remind myself that resting even when I feel better may hold the key to a meaningful recovery. I can also uphold my end of the bargain with my doctor – by learning to avoid PEM, I stand a better chance of the treatments working and perhaps increase his willingness to try new drugs with me when they become available.

This morning I stumbled upon a quote by Elizabeth Gilbert that seemed to provide a clue for how this might go for me: “When you come to the end of yourself is where all the interesting stuff starts.” We shall see.

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Thinkstock photo via golubovy.

One of the most frustrating things about living with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is that most of the time, I don’t “look” ill, and so people may not understand the fact that there’s anything wrong with me.

CFS/ME falls into the category described as “invisible illnesses,” which I think sums it up very well! Other invisible illnesses include fibromyalgia, lupus and Lyme disease, to name a few.

Living with CFS has made me realize how easy it can be to misjudge people. People may see me and think I look absolutely fine, whereas on the inside I am dealing with a debilitating chronic illness. This can be very frustrating!

My husband also gets frustrated as friends/family will say “Emma looks well” and he’s trying to explain that although I do, I’m actually feeling pretty rubbish — to put it mildly! If you also have CFS/ME or other similar illnesses, you may also know how challenging it can be to explain to people how you feel when they can’t see it. When you have an illness that is so poorly understood, we really do have a challenge on our hands!

When I first got sick, I used to worry about going out of the house in case people thought I was a fraud. However, after a few months of living with CFS/ME I realized I can’t stay cooped up inside forever. See, it’s not like having a short-term illness where you’re off work sick for a week or so. This becomes everyday life. You are living with a chronic illness and you need to try and get out and about when you can (as difficult as it can be sometimes). Obviously there are times when I feel so ill I absolutely can’t leave the house, but for me, on the “better days” I feel better for popping out — even if its just for a short stroll.

Which brings me on to my next point. Just because you see me out having a coffee with a friend (or something along those lines), it doesn’t mean I feel well. For me there is an amount of effort (not to mention planning!) that goes into getting out for that coffee. It can use up a huge amount of energy and I have to make sure I factor in time to rest before and afterwards. Even then I may still feel it for the next day or two. Before I became ill I’d never have thought that going for a coffee could be such a big deal! It would be so nice not to have to think so much about every little activity, but these things really do need careful planning or it’s me that will be in pain.

Please also bear in mind that the times you see me will be on my better days. So I will have made an effort to look OK and may therefore likely look like any healthy person. Very few people will see me on my bad days and during the tough times. Friends will see the Emma out having a chat and a coffee, whereas only my husband will see the Emma who comes home wiped out from it and has to go to bed for the rest of the day.

I met someone else with CFS (she has since become a good friend) one Saturday at a reiki healing clinic, and she said she couldn’t believe I had the condition as I looked so well! At this time she was in the early stages of the illness and felt bad for just being out of the house. It was a “good” day for me, I had managed to wash my hair and I was also wearing makeup. I told her this and she said she didn’t wear makeup as then people wouldn’t believe how ill she was. I explained my own battles with this exact scenario but told her I now wear makeup as it makes me feel better and more positive. If I look in the mirror and I always look ill, that only makes me feel worse.

We had a chat about the difficulties in living with an invisible illness but how it shouldn’t stop us from presenting our best selves to the world. Even when on the inside we may feel pretty awful. So please do bear in mind that next time you see someone with a chronic illness smiling and looking well, that person is likely to be going through more than you might begin to imagine.

Follow this journey on Not Just Tired.

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Around 25 percent of people with myalgic encephalomyelitis (ME) are severely affected by the disease. Typically they’re housebound or bed-bound, sometimes for years, unable to carry out the basic tasks of day-to-day living. I’m one of them.

When you have ME, the world gets magnified. Things become too far or too heavy or too high or too loud or too fast or too complicated. When your ME is severe, the magnification becomes grotesque and bizarre. Your world goes up to 11. Daylight is too bright, birdsong hurts and you can’t walk the length of a living room. Think of a glass of water; think of lifting the glass to your lips. Now empty the water down the sink, and fill the glass instead with coins. Pound coins, copper, silver – any coins will do. Fill it to the brim with coins. Now lift the glass again. Notice the weight of it. Notice yourself noticing the weight of it. This is what it’s like to have severe ME. Now think of everything you lift in a day, but with that extra weight. A toothbrush, a newspaper, your phone, a fork, your body from a chair, your hands to wash your face, your clothes above your head, a child.

Severe ME doesn’t just cause physical disability though. It disrupts cognitive functioning too. So let’s try something different. Let’s try reading. Think of a paperback book. Remember that extra weight; it will be too heavy to hold for long. Rest the book in your lap, or on the bed beside you. Open it at the first page. Now think of your eyes and mind traveling along the first line, picking up the meaning of each word as they go, and the meaning of each word in relation to all the other words around it. It’s 12 or 15 words to the end of the line. Carry all those meanings with you all the way. If words start to merge or slide or dissolve, run your finger along the line, like a child. Now think of your eyes and mind traveling along the second line, picking up the meaning of each new word, and its meaning in relation to all the other new words, still carrying all the meaning from the first line, and adding to it all the new meaning as you go. It’s a lot to carry – words and words and words – but keep going. Sometimes you’ll drop things. When you do, read them again. A word or a line or a sentence. Read them again and again, if you have to. If words start to unravel, spell them out, letter by letter, like a child. I don’t care if you’ve got a degree. I don’t care if you’ve got several. Spell out the words until they make sense. Keep going, word after word, line after line. It’s more than 30 lines to the bottom of the page. More than 370 words. Keep going. At some point – maybe after a page, or a paragraph, or just a couple of sentences – you’ll start to feel sick. The kind of sick you feel when you run too far. You can’t go on reading, just like you can’t go on running. You have to stop. Stop. Take a breath. Close the book. Think about reading the whole book this way. It will take you four or five months, but you will have read an entire book. No one else will know what an achievement this is.

Now rest. You’ll need to rest so you have enough strength to do the next thing. The next thing might be getting to the bathroom, and you need to be able to get there on your own because there’s no one in the house to help you. Or it might be eating, and if you can’t lift a fork your husband will have to feed you. So rest. Think of lying in a darkened room, eyes closed, no sound. Use an eye mask and noise-cancelling headphones if you have to. Think of lying there for hours, exhausted because you just read a couple of pages or climbed a flight of stairs. Think of spending most of your day like this.

This is what it’s like to have severe ME.

This post originally appeared on The Bad News Is You’re Not Going to Die.

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Thinkstock photo via Voyagerix.

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