The Power in Defining Your Chronic Illness

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I write to you today from inside a café at my university. There is the quiet mumble of voices, the clinking of cups and the bittersweet smell of coffee lacing the air. Cafés are quite possibly my favorite place in the world to write, but unfortunately, I barely visit them anymore.

According to the world, I could look at this situation in one of two ways. I can be disappointed in the fact I can no longer sit here for more than an hour before going home and having an energy crash. Or, I can be thankful that I’m just here in the first place, and be grateful because things could be so much worse.

The reality of my feelings towards the restrictions I’ve had to place on myself for my own well-being since I’ve been sick is much more complex. Like with everything related to chronic and incurable conditions, nothing is ever black and white. Life isn’t consistent or predictable when you spend every day praying that your body just holds it together for one more day, every single day of your life.

The way I describe it, it sounds like my whole being is defined by my illness. I feel like this is one of the biggest fears of those with chronic illness – being defined by your illness equates to being controlled by it.

Having had almost a year to think about what life changes are bought along with myalgic encephalomyelitis (my most recent diagnosis), I’ve been through a whirlwind of emotions. The uncertainty and ever-changing
symptoms of my conditions mean that I’ve been on edge and living in fear for a long time. That, as well as the crushing disappointment of, “there is no cure,” and even worse, “I can’t help you,” left me in limbo and all consumed by managing this illness. In the end, I realized that in fighting my condition so valiantly, I had done exactly what everyone told me not to. All my actions, my thoughts, and my whole way of life became underlined with the limitations of illness.

And yet…

I am 100 percent OK with this.

Because my condition doesn’t define me. I define my condition.

I define how much I let it affect me, how much of it I show to the world, how much I want to make it part of me. Constantly considering the impact of my actions has made me a more aware individual, not just of my limitations, but also where I can excel. In refusing to not consider my condition in my life, I would’ve ended up letting my illness control me. In my opinion, constantly burning myself out and ending up with aching joints, a head full of cotton wool and forgetting where I am, is letting my illness control me.

By working with it, rather than living like it doesn’t exist, I have freed myself. I can do some of the things I love, but I must appreciate the energy it takes. Now, I spend time doing things I really want to do, rather than letting my days fly by.

I think we need to let go of the notion that being defined by illness is the worst thing that could happen to any of us. The more I butt heads with symptoms, the more obvious they become. Many of us were told as children that you shouldn’t care what people think, and the more time you spend focusing on being normal, the unhappier and sicker you will get. Everyone has limitations. Appreciate yours, and work with them. Otherwise, you might miss out on life, and that is personally my biggest fear of all.

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The Hidden Struggle of Being Young and Chronically Ill

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I’m a 19 year old university student in semester break. It’s a Saturday morning. I woke up dehydrated and nauseas, absolutely exhausted (I didn’t sleep until around 4 a.m.), sore and feeling foggy. I’m sure I’m not alone in this feeling – many other young university students will be waking up feeling ill after a big Friday night. The difference is that last night, I stayed in. I drank a cup of tea, quietly read, and then lay in bed for hours begging my body to sleep. I didn’t wake up feeling like this because of alcohol or partying. I woke up feeling like this because of myalgic encephalomyelitis (ME).

I have had this illness since I was 16. In many ways its severe fatigue, pain and insomnia have become a normal part of my life. But as I got older, and grew more independent, I realized just how dearly you pay when you are forced to give up your youth and live the life of being ill instead of someone just discovering the magic of the world. You pay by getting just a little taste of what’s out there – of love, of parties, of travel, of hiking, of working, of living – and then being forced to give it up before you even try it, before you even have any memories to treasure. I’m forced to lie in bed, wondering if I’ll be able to finish this uni semester as the half an hour travel time takes its toll on my energy, while I scroll through Facebook feeds of friends who are touring Europe, volunteering, dancing and starting their lives.

On top of this is the huge emphasis placed on young people for being so vital and full of energy. Not only do you find yourself sad, lonely, and with the worst case of FOMO in history, but you constantly have people telling you:

“You’re sick? Oh you’re young! You’ll spring right back.”

“Live while you’re young. Don’t stress as much as you do, just relax and go party – you’ll be fine!”

“You should get a job, how else are you going to travel?”

“This is the best time of your life! You’ll never feel better than you do now.”

I want to say to these people that if this is the best time of my life, life royally sucks! How’s it meant to get worse from here? No thank you!

While this illness is completely devastating and life altering at any stage in life, I’ve found you’re even less likely to receive sympathy when you’re young. You’re more likely to be the recipient of glares if you find you can’t walk properly because your legs buckle beneath you, and judgemental looks of disbelief if you park in a disability spot. On top of this is the huge isolation that comes from not being able to keep up with your peers, not having any news to tell them even after months, not being able to go to long parties or out dancing. Eventually the invitations stop coming, and so do the friends.

Not only are you desperate to figure out who you are and to try to choose a career and a life that suits you, you have no time or energy to make a mistake, and you must work it out with the burden of ME interfering with the “me.” How are you supposed to build an identity, love the world and yourself, when you’re not allowed to experiment, explore, or even feel connected to the world? It feels lonely, and terrifying, and like you’re going to let everyone down if you can’t fix your health and be successful. It feels like you’ll let yourself down.

It’s hard to have hope. I’m struggling with it myself right now. But my best advice to give if you are young and sick like me is to learn to love yourself anyway. You have an identity. You have beliefs and a personality, you have kindness, opinions and your words. It might feel like you have nothing. No job, no degree, no experience, no purpose. You might feel like a failure. But I assure you, that is not you. Because becoming sick young also makes you brave, kind, and mature far beyond your years. You can learn to pace yourself, value the quiet times of life and what really matters, way before any of your peers even realize that they need to. I know it sucks. But you are strong. You are incredible. And you are worth every breath you take.

All I ask is that next time, if you’re young and one of your friends has to keep canceling for mental or physical illness, give them the benefit of the doubt. And if you see someone young who is struggling, don’t tell them they should be grateful for their youth, give them your care, because they know all too well what they’re missing out on.

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When a Doctor Gave Me Antidepressants to Treat My ME/CFS

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Almost everyone with ME/CFS has a story about the time a doctor tried to persuade them they were “just” depressed. This is mine.

A year after being diagnosed with ME/CFS, I relapse badly. Nauseous, feverish and weak, barely able to walk to the end of the street, I sign off work for a month, then another three. My GP takes blood and runs tests, but the results were normal. Unable to find anything wrong, he refers me to a specialist.

The specialist listens while I tell him about the nausea, the night sweats, the difficulty walking. Then he leans back in his chair and says, “I think you should try antidepressants.”

 

I’m thrown. The symptoms I’ve just described are physical, not emotional. “But I’m not depressed,” I say. “Let’s see, shall we?” he replies, pulling a questionnaire from a folder like a rabbit from a hat.

The questions are familiar: I know them from psychology textbooks. I could cheat – either way. But I’m curious. Maybe I am depressed, I just don’t know it. Isn’t that a hallmark of depression? What if I was depressed, and taking a pill could make this illness disappear?

Totting up my score, the specialist is disappointed: I’m not, officially, depressed. Disappointed, but not deterred. “I’d still like you to try the antidepressants,” he says. He seems to think we’re playing a game, one in which he knows I’m hiding something, and I know he knows I’m hiding something, but as long as I just agree to take the pills, we need say no more about it. I’m not hiding anything, so I refuse.

Four weeks later, still nauseous and weak, still barely able to walk to the end of the street, I ask for the antidepressants. Swallowing the small white pills, I feel anger and hope, both.

We sell our house, with its bathroom at the top of the stairs I can no longer climb, and rent a bungalow on the coast. Each day I walk the short distance down to the shore, wanting to be near the ready, expansive beauty of the sea. But something’s gone awry. Sunlight festers on the water. The waves break like tired clichés, over and over. The whole scene, rocks, sea, sky, is lifeless as an amateur painting.

That summer, the world takes on the hue of a stage-set – becomes flimsy, illusory, fake. I start to hate the bungalow, with its sunshine yellow walls and perky curtains, its garish roses and sickening green lawn. Behind the paint, beneath the grass and the shag-pile carpet, another world heaves. When I’m alone in the living room, deep pits open in the floor and try to swallow me up. I lie awake at night plotting to take my own life. The world is a trick. I’m still in the Emerald City, but I’ve taken off my green-tinted glasses.

At my next appointment, I tell my specialist about the sulky sea, the pits in the floor, the suicidal thoughts. I think he’ll be pleased, because I’m pretty sure this is depression. He isn’t; he’s concerned. He makes me an appointment with a psychologist.

A few days later, in a moment of lucidity, I look up the side effects of the antidepressant I’m taking. The list is long, and includes “suicidal feelings.” I call my GP, and he tells me to change brand, straight away. 10 days later I’m no longer trying to work out the best time to take my own life so no one will see and intervene.

I swallow the second brand of antidepressants for the next four years. I’m scared that my depression was part of my ME, that my suicidal feelings were the manifestation of some dark undercurrent of the illness. I’m scared that without the pills, those feelings will return. When I finally stop taking the antidepressants, nothing changes. My mental health stays stable. And my ME neither worsens, nor improves.

I experienced this depressive episode in 2008. It kickstarted years of fear and self-censure, in which the medical profession continued to suggest my illness was psychological, and I was encouraged to exercise and push through my symptoms. When my health deteriorated, and eventually I became bed-bound, I blamed myself: I was weak, I wasn’t trying hard enough, I must have some deep-seated psychological reason for staying ill. It would be another seven years before I met a practitioner who taught me my body needed rest, and how to pace my activity. “Respect the illness,” she told me. It was the single most helpful thing anyone has said to me in the 10 years I’ve been sick.

Antidepressants can sometimes be of benefit to people with ME. They can alleviate symptoms such as pain and poor sleep, and they can help – just as they can help people with any chronic illness – when patients become anxious or depressed as a result of being sick long-term. But this doesn’t mean ME/CFS is the same as depression, nor that antidepressants provide a cure; and it doesn’t mean ME/CFS is an illness of the mind.

The bizarre logic employed to argue that ME/CFS is depression – often “just” depression, as if depression itself were innocuous and easily cured, rather than a complex, poorly understood and sometimes fatal condition – runs something like this. People with ME/CFS complain of tiredness, but no physical cause can be found, so their problem must be psychological; people with depression feel tired, ergo people with ME/CFS are depressed. But it’s an arrogance in Western medicine that assumes that because its usual tests find nothing physically wrong, there’s nothing physically wrong to be found. Over the last decade researchers have discovered a range of neurological, immunological and endocrinal abnormalities in people with ME/CFS. In 2015 the US Institute of Medicine published an evidence-based report stating that ME/CFS is a serious systemic physiological disease and should not be seen as a mental health condition.

Despite this, much of the medical profession here in the UK and beyond continues to see ME/CFS as a psychological illness. This has to change. It’s not just a question of semantics, nor of patients with ME/CFS trying to distance themselves from the stigma often associated with mental health problems. Treating ME/CFS as psychological – conceptually, literally – can cause patients real harm. The psychological model of ME/CFS assumes its symptoms are simply the product of the mind or the imagination, rather than of a physical disease, and can safely be ignored. Patients are encouraged to exercise despite their exhaustion, weakness and pain, yet time and again – just as I experienced – they report that even minor exertion worsens their health. We need to keep talking and writing about ME/CFS until both the medical profession and the wider community understand the truth of this disease. We don’t yet know exactly what ME/CFS is, but we do know that it isn’t, as I was once told, “all in your head.”

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Thinkstock photo via psphotograph.

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11 Hidden Realities (and 4 Hidden Gifts) of Myalgic Encephalomyelitis

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You can read quite a bit on the internet about the symptoms of myalgic encephalomyelitis. But there’s so much more beyond the clinical terms and symptom lists. Here are just a few of the hidden realities, along with a few hidden tricks!

1. You will likely grieve, and grieve hard, for the things you have lost. Both the small and the big things. For me, one of those things was working out. When I say working out, I mean the sweaty, hardcore workouts that most people hate. (Yes, I am that person!) Every day I still miss the feeling of strength, power and accomplishment those workouts gave me.

 

2. Selecting your meal – this has now become a conscious choice. On bad days, I will literally make my selections based on how much chewing is involved. Chewing actually takes quite a bit of energy; more than I may have in the moment.

3. Ice cream is a treasure not to be taken lightly. No chewing and it melts in your mouth. Sometimes it can even perk you up a bit. As long as the cold doesn’t give you the chills for hours after, you are golden!

4. Sippy cups! A blessing! I spill so often now due to my new lack of coordination. Sippy cups with a tight snap shut are great and can even be very fashionable!

5. Resting for extended periods of time is unavoidable on many days. Sadly, the resting may have no meaningful effect on how you feel, but you may not be able to avoid it. Sometimes I even crave it, almost like an addiction. My body lures me into a deep sleep, only to wake feeling like I’ve been hit by a semi-truck, at best. But it can be unavoidable – your body won’t let you escape it and you fear it because you know what awaits you when you wake up.

6. We’ve all second-guessed ourselves when making decisions on little sleep. Imagine the amount of second-guessing you do when it’s been years since you’ve felt rested. (Though I’ve found this to be a fixable issue. Awareness of this issue can eliminate it from being one.)

7. Phone alarms are fabulous. I live on an alarm-based system. If I didn’t set my iPhone for each daily event, I would easily zone out important events or activities.

8. Isolation is hard! Mentally you want to be challenged, to live, to laugh. You crave it. But physically getting off the couch is enough some days. The idea of even initiating a telephone conversation can seem overwhelming and take too much energy.

9. Friends will leave – this can be heartbreaking. It’s an overwhelming, invisible disease. Some people just find leaving easier than figuring out how to be there for the new you.

10. Friends will stay. These are the keepers! Through simple texts or an occasional day out, they help minimize your isolation and increase your socialization.

11. Your symptoms will probably fluctuate. There oftentimes doesn’t seem to be a rhyme or reason for it. The onset can be random and even your own range of symptoms can be random. For me, just when I got used to my own circle of painful symptoms, a new symptom would appear and integrate into the mix.

But… Despite all this you will also gain different perspectives and a new kind of strength.

1. If you can live a relatively good life despite dealing with the daily symptoms of ME, you can survive anything! Anything!

2. Also, certain types of stressors now become minimized or even forgotten (thank you, memory loss!). ME really puts things into perspective. So much of what I stressed about before is a nonevent for me now.

3. You will find new sources of success and enjoyment. It is inevitable that your new “lifestyle” will lead you down new, unexplored paths. Some of those paths may just be your next favorite thing to do!

4. My best advice: Hang in there! While it will get worse some days, there are some days that your new discoveries or accomplishments will really brighten your day. Don’t let yourself miss out on these days by focusing on your symptoms. Truly find ways to be grateful for all the good in your life (even with ME, there still is a lot of good!) and you will find this disease so much more bearable.

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Thinkstock photo via heckmannoleg.

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The Benefits of Connecting With Nature When Living With a Chronic Illness

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Since becoming ill with ME/CFS, just over four years ago, I have found many benefits in learning to connect with nature. Spending time in nature is both relaxing and deeply healing. It can provide some much needed nourishment for the mind, body and soul! Nature can help us to feel revitalized, and often helps provide us with a fresh perspective when we feel a bit stuck in a situation or negative mindset.

Unfortunately in today’s modern world, we often fail to spend time in nature due to an increasing amount of time spent indoors – often in front of screens. As technology continues to progress, it is very easy to get caught up in this “cyber world” as we become addicted to our tablets and mobile phones. How many people take their lunch these days, surfing the net while eating a sandwich?

 

Also, when living with a chronic illness, it’s not always that easy to get outdoors. Just getting out of bed can use up a huge amount of energy, so getting out of the house can be a step too far on some days. However, on the “better” days, I find that spending time outside in nature has a positive effect on how I feel.

Getting outdoors allows us to take a break from the monotony of living with chronic illness, as well as slowing down our busy minds. Paying attention to beautiful things such as pretty flowers or a clear blue sky can be incredibly calming. In fact, studies now suggest that time spent outdoors can have real long-lasting health benefits.

From my own personal experience in living with a chronic illness, I have found that spending time in nature has helped to ease painful sensations in my body and calm my mind. Rather than focusing on what is wrong or feeling helpless and frustrated by my situation, it has helped me to refocus my attention on all the wonderful things we so often take for granted.

On the “good days,” it’s usually easy enough to sit outside in a garden or on a park bench – or go for a stroll if you are up to it. As little as 10 minutes outdoors can make all the difference in how you feel, and it is such a simple thing to do!

If you are unable to leave the house, then how about opening the windows and letting nature come in to you! Simply gazing out of the window and looking at the trees can be wonderfully relaxing! Or lying in bed listening to the sound of the rain can be nice and calming – having an almost meditative effect!

However, if our minds are busy it can be difficult to switch off, which leads to us being de-sensitized as to what’s going on around us. Often we find our minds are elsewhere thinking about all sorts of other things. Also, when our bodies are in pain or our mood is low, it can be really hard to switch off from all of this.

Something I have found helpful when learning to switch off and “connect” with nature is to tune in to your senses – so paying attention to what you can see, smell, hear, touch and maybe even taste! This can really help you to be mindful and to start appreciating what is going on around you. Simple things will make a difference, such as noticing all the colors you can see as you look around at the flowers, plants, trees and sky, listening to the sound of the birds singing, touching the leaves on the trees and even taking time to smell the flowers.

When I first became ill with ME/CFS (and I was forced to slow down), it really occurred to me just how much I’d been caught up in the busyness of modern day life – by living life on a treadmill without really noticing what was going on around me. I vividly remember one day pausing to hear the birds sing, and then I realized just how long it had been since I’d noticed this simple pleasure. Now every time I go outdoors or open the windows, it is one of the first things I notice, and it always makes me smile!

The more you take the time to consciously “tune in,” the more automatic it will then become. You will soon find you become much more aware of the world around you. One of my favorite things to do is to sit in the garden with a cup of my favorite herbal tea, and simply spend time watching and listening to what is going on around me.

Being in nature can help to provide us with a welcome break from our pain, as it helps bring the body and mind back into harmony and balance. It’s not known as “nature therapy” for nothing!

If you have more energy, then why not plan a trip to the seaside or go for a stroll in the woods? Particularly if you live in an urban environment, this can be hugely beneficial. Spending time breathing in the fresh air and taking time to admire the scenery “connects” us to nature, which can feel wonderfully invigorating. Kick off your shoes and walk barefoot in the sand or grass and enjoy the feeling of being free from the constraints of everyday life!

Why not grab your camera and capture some snaps of the amazing things that grab your attention? This is something I have done since becoming ill and it has really helped me to pay attention to all the beautiful things around me (please feel free check out my Instagram account!). I’ve realized that you really don’t have to go very far to discover these things. Many of my photos are taken in my garden! Taking photos really does encourage you to focus more on what you can see – as well as maybe even bringing out your creative side!

In my opinion, connecting with nature can help to create a positive perspective on life and brings back a sense of wonder for the world we live in. Both of which I feel I certainly need when living with the constraints of chronic illness. It may not cure us, but it can certainly help us to feel a little bit better about our everyday lives!

What simple things can you do today to connect with nature? I would love to hear your comments!

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Thinkstock photo via Smileus.

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When My Illness Prevented Me From Attending College

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It’s 2014, I’ve graduated high school. Now, in the summer before everyone was getting ready to leave to start their exciting journey, I realized I was stuck. Stuck with the reality that my illness has overtaken my life and stopped me from moving away. I say good-bye to my best friends and wish them luck as they start their new adventure. I am heartbroken. I scroll through social media feeds and constantly see friends going on new and exciting adventures. It all seems unfair. There are many different reasons why I was feeling this way and I’ve tried to summarize a few:

1. My friends thought that I was “lucky” to not have to attend college. Little did they know, I constantly wondered when or how I will be able to attend university. I wondered if my body would ever allow me to live my dreams. I need my doctors close by, along with my pharmacy and pharmacist who knows all 19 pills I take daily and often answers complicated questions about my prescriptions. Moving away is just a dream – seemingly only available for those who are healthy.

2. I felt inadequate compared to the people around me. Even though I personally know the reality of my chronic illness, I still understand that other people don’t know the battle I am against. I felt judged when I said that I would not be attending college. Friends and family asked me what I would be doing instead of attending college, and unfortunately, I didn’t quite have an answer. I try to explain to them that I am not healthy enough to move away. They give their well wishes and say that they hope I have a “speedy recovery” or hope the doctors are able to miraculously “find a cure,” but they don’t understand that I will never truly be rid of my illness. Unfortunately, I know the reality that a cure is far from being here.

3. Complete devastation is the easiest way to explain how I felt when I came to terms with the fact that my illness was the only thing limiting me from my next step in life. I wondered what would happen to me and where I fit in the world. I asked myself so many questions. Will I ever be well enough to attend college? Do I even have a chance at pursuing my dream job? Will I ever be able to live on my own without assistance? For healthy adults, these are questions that they never have to think about, but unfortunately for those of us who are chronically ill we must ask ourselves these questions and so many more.

Throughout the years, I’ve realized that time really does heal. The feelings of frustration and anger will be relieved when you find something that works for you. I currently attend university online. I’m able to pace myself and work on my classwork when I feel well. I’m not expected to be in class everyday, for hours at a time and that’s the key part of my success in college.

Although we may always be chronically ill, that does not control our fate. We are warriors, strong and courageous, and if we can fight our illnesses everyday we can certainly make a difference in the world around us. Our story may not be like all the others around us, but that’s what makes us so uniquely and incredibly special.

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