Zoë B.

@zoe-b | contributor
I have been suffering with ME/CFS for a few years now and it has completely turned my world upside down. I am mostly housebound and am able to do very little most of the time. I use my writing to both help myself cope with the way I’m feeling, hopefully help others going through similar experiences, and to raise awareness.
Zoë B.
Zoë B. @zoe-b
contributor

Marking My 'Lost Years' With Myalgic Encephalomyelitis

So here we are, Myalgic Encephalomyelitis Awareness Week 2022. I’ve been ill with ME for 6 years, 5 months, and 4 days. That’s 2,347 days of feeling poorly Every. Single. Day. That’s 2,437 days of waking up unrefreshed and aching from head to toe, of struggling to make it through the day, of watching the world moving fast around you but being unable to join in. It can be hard to imagine something like that without actually living through it yourself. It is strange because in a way you get used to it as the days drag on, but at the same time, you never get used to it because you always have a feeling that something is not right in your body. Even though it gets harder and harder to remember what it felt like to be healthy with each day that passes, you can still feel that what is “normal” is not your body functioning properly. I got sick when I was 24, and I am now in my early 30s. In some ways, I am grateful that I got to have my teenage years, go to university, and even have two years post-university, all before it became impossible for me to live a “normal” life for my age. However at the same time, I feel a lot of pain and sadness that most of my “living” in my 20s was taken from me, and now my 30s seem to be going that way too. The way some people feel about the time of the pandemic, the way they view them as “lost” years while life was on hold, that has been what my life has felt like ever since I got sick, with the addition of being physically unwell the whole time. I’ve been missing out on many milestones that my peers have experienced, and the older I get the worse it is. Most of my peers have been getting married, starting families, and that’s not even mentioning their career progress. All the while I feel a bit like my life has been halted at 24, wanting to be able to live my life like everyone else, but being trapped in a body that won’t let me. In the stage I’m at now, I feel less of the acute pain and frustration I felt earlier on in my illness. I’ve even learned to enjoy life as much as I can, where I can, and that’s helped me to find more acceptance. I still desperately hope I will improve, and I often find myself planning all the things I will do once I am well enough. I now have a mental list that stretches to the horizon. I’ve always wanted to do and experience lots of things, and my illness hasn’t taken that from me. It has simply made the actualization of my ambitions much, much harder, sometimes impossible, and sometimes requiring some inventiveness or reshaping. ME is a very real, physical illness that devastates lives, affects way too many people, and receives way too little funding. This ME awareness week I would encourage you to try to learn more about ME from good sources (I recommend the ME Association and my stories and other articles here on The Mighty) and also please consider donating to an ME charity if you are able.

Zoë B.
Zoë B. @zoe-b
contributor

What It's Like to Be Suicidal With Chronic Fatigue Syndrome

I have times when I want to die. I know this isn’t because of clinical depression. I’ve experienced that oppressive weight in the past and that’s not what this is. My desire to die is due to something different. I suffer from the chronic illness ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I’ve been ill now for over three years, and I’m not really any better than I was at the beginning. In fact, I’m worse than when it started, though it has been a roller coaster of minor improvements and declines. The illness has hugely altered my life, and I feel like I have a very low quality of life now. I am mostly housebound and everyday tasks like showering, cooking or even reading on the computer exhaust me. I do occasionally manage to go out, or to have friends visit, but I always pay for this afterwards with a worsening of my symptoms. There are so many things I still want to do in my life, but I’m trapped in a body that won’t let me. Sometimes I will push myself to do things I want to do, such as attend a friend’s wedding, but because I’m in so much pain and discomfort I find it hard to enjoy even though I desperately want to take part. Then, of course, I still have to pay afterwards for doing the activity, often crashing for weeks or months. I dream of traveling, having a family, being able to work again and being self-sufficient, but I know these things are impossible for me right now. I even dream of simply being able to go for a walk or ride my bike again. I just want to feel like a normal 20-something. The suffering feels relentless. As a result of my illness, I have to deal with the endless fight to get welfare. I’ve had to endure the breakdown of my long-term relationship and the subsequent struggle to find somewhere to live. I feel like a burden: a burden on my parents who have to help me in so many ways, a burden on society as I am unable to work and a burden on friends and family. I’ve undergone a profound loss of self-worth, as I am now able to do so little and I’m so dependent on help from others. Sometimes it just all feels too much, and I feel like it would be better if I weren’t here. That it would be better if I were no longer around to feel like a burden on my family, or on the state. I can’t face the thought of a lifetime feeling so unwell and so unable to be part of the world, of seeing my life pass me by while I watch helplessly from the sidelines. Of course I do experience feelings of depression, but I’m sad because it is sad, not because I’m clinically depressed. I know that some people are able to stay positive in the face of extreme adversity, though I’m sure many people with ME will at some point experience wanting to “give up.” ME is a cruel illness to have. The symptoms often appear invisible to onlookers, and there’s a lot of stigma surrounding the illness. We are dismissed, disbelieved and ignored, and this all adds to the anguish we endure. I know it could be worse for me. I could be bedbound, unable to feed myself or speak. However, I feel like I am well enough to know what I am missing, but not well enough to take part, and it just feels so hard. What keeps me going is knowing how much it would hurt those who love me if I left this world, my fear it might encourage others to make the same choice, as well as having hope that things will improve. I still feel like I need to have the choice to opt out, though I do try to tell myself it’s not an option for me. I have to find my inner strength and work on understanding my value despite my limitations. We live in a society that values external achievements above all else, so I have to learn a new way to view what it means to be successful. I’m getting there, I think, but it’s an ongoing lesson and I have to keep trying. If you’re reading this and you empathize with what I’m saying, know that you’re not alone and we’re in this fight together.

Community Voices

How The TV Show ‘13 Reasons Why’ Saved My Life

A few years ago I spent quite a bit of time thinking about ending my life. So much so that I wrote a musingsofaplatypus.blogspot.com/2019/01/im-suicidal-but-im-n... discussing the reasons why I wanted to die. I even got close a few times, I had my escape route all planned out and everything.

I had been going through a really difficult time in my life. I had been struck down by a debilitating and incurable chronic illness, and as a result, my relationship of several years was falling apart. My world as I knew it was crumbling all around me, and I happened to actually like the way my world had been. I was losing everything that was important to me: my hobbies, my job, my relationship, my independence, even what I thought of as my identity. So many things were being taken away from me, and what I was left with didn’t seem worth living for.

I wasn’t really clinically depressed, although I did have moments of despair and depression, it was just that I felt like my life was too small to be worth living, and I was just a burden on those around me. I thought that those who loved me would be better off if I weren’t around, as they were having to do so much to take care of me, and I could offer so little back.

Then I watched season 1 of the show ‘13 Reasons Why’. If you haven’t seen it, it is about a teenaged girl who commits suicide, but leaves behind a set of tapes explaining why she did it. As the series goes on, you begin to get a clearer picture of all the things that drove her to take her own life.

Whilst her story and motivations definitely don’t mirror my own, what struck me was how many people were deeply affected and upset by her death. I had always thought that whilst my dying would affect those who love me, such as my parents and friends, they would be better off without me to be a burden on them. However, it was ultimately thinking about those I loved that had prevented me taking any action yet. But when I saw the portrayal of the lasting and profound impact this teenaged girl committing suicide had on many people, not just her family and friends, really hit home to me the devastating impact this has on those around the person who has died.

Although it is fiction, the show is moving and impactful, and it made me see how widespread the harm can be from a suicide. As the ‘mind’ www.mind.org.uk/information-support/guides-to-support-and-se... says, “Suicide can have a ripple effect, extending well beyond the person’s immediate family and friends”.

If you are feeling like you are in a place similar to where I was, I would like to offer you some encouragement. I no longer feel like I want to die, or that my life isn’t worth living. The people who I worried about being a burden on, they look after me because they want to, because they see my life as something valuable and worth preserving. I have learnt to focus more on the positives in my life: every night I write down three things that I am grateful for that day, and this small act has had a profound impact on the way I feel about my life. I make time and use my limited energy to do things I enjoy, and I try to feel excited about it. Even if they are only small things, if I think about my enjoyment of them, it makes me feel happier to be alive, and I can look forward to the next thing. My value to others is not in what I do, but in offering love, kindness, and my own unique personality. I promise that the same is true of you as well.

Whenever I am going through a hard time, I find it helpful to think about the concept of impermanence: this is the idea that everything is always in a state of flux, nothing ever stays the same. Whilst this means that the good times never last, it also means that the bad times never last either. Everything passes, we just have to weather the storm and wait for the sun to come out. Or we can even learn to enjoy the storm (dance in the rain), for we know it will pass and we won’t get to experience the same storm again – though that may be a bit hard to contemplate from a place of despair.

Whatever your current situation, know that you have value that is intrinsic. You don’t have to do or be anything to be valuable, who you are is enough. Also, your life touches so many people that you might not even imagine, people whose lives are made better by your existence.

Community Voices

When you become disabled, regardless of your disability, I think the things you miss the most are the things that gave you freedom and independence.
I miss simple things that most people don’t even think about: like being able to walk to get places, or being able to pop to the shop if I need something. Without the ability to do those things it’s easy to feel trapped and dependent.
That’s why aids, such as wheelchairs, are so important. They allow me to do things I couldn’t otherwise do. They give me more freedom. Whilst they don’t necessarily overcome all obstacles, any extra freedoms are important and can help make life more enjoyable. #MyalgicEncephalomyelitis #Disability #MobilityAids

Community Voices

As I approach this milestone birthday, I can’t help but feel a sense of sadness. Is it okay to mourn the loss of much of my 20s to this devastating illness? Whilst I admit that focusing on the positive is good, ignoring your more painful emotions just causes them to fester, so embracing them can be helpful.

I sometimes find myself comparing my life to those of the elderly, who have already lived full lives, and I find their lives still fuller than mine, even though I am not yet 30. That is hard. When you have more in common with your grandparents than your school friends it is painful and sad.

I got ill with ME at 24, and similarly to how people view the last year with the pandemic, I feel a bit like my life was put on hold then, and the intervening time has just been a pause. In a way, I still feel like I’m 24, because my life hasn’t progressed in the way that it ‘should’.

I’m so far from where I thought I would be at 30. I’ve lost so many of my ‘good’ years in my 20s to this illness. I’d hoped to progress a career, go travelling, maybe even get married and start a family, but none of that has happened.

I’ve had to learn that life often doesn’t go to plan, and that the only way to live is in the moment, one day at a time. I’ve had to let go of the expectations I had for my life, and learn to accept and appreciate the life I’ve been given (which isn’t always easy!).

I struggle to accept the loss of my 20s, but I hold on to hope that my 30s will hold something better in store for me, even if it’s not what I might have planned.

Myalgic Encephalomyelitis

Chronic Fatigue Syndrome

Chronic Illness

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Zoë B.
Zoë B. @zoe-b
contributor

Reflections on Living With Chronic Illness for 5 Years

I remember the days when weeks felt like a long time to be ill. Once, before myalgic encephalomyelitis (ME), I got a nasty infection and was ill for about three weeks, but it felt like an eternity. Now the idea of being ill for weeks then recovering doesn’t sound too bad to me. When I first got sick with ME I swore I’d be better in a few months, then that extended to within a year, and later within two years. When I passed all these milestone with no real improvement, it was crushing. I was so optimistic that I would achieve that two year mark. Now I’ve hit the five year mark and sometimes it truly feels like it will go on forever. I try to hold onto the hope that it won’t, but it is easy to slip into despair from time to time. The person I was before I got sick now feels like a distant memory. I still get glimpses of her sometimes, like in my rare bursts of energy, but these past five years have definitely changed me significantly. I do remember I used to worry and stress a lot about things that seem silly to me now, such as things at work that seemed so important at the time, but in retrospect didn’t really matter. Being sick, and for so long, has actually forced me to learn to be grateful for the small things, and taught me to value what truly matters. My story is a sad one, of a young woman cut down in her prime by a devastating illness, subject to disbelief and a lack of understanding from friends, family and doctors. This illness has taken many things from me: my career, my partner (who I’d hoped to marry before I got sick), my hobbies I loved, my fitness, my self-esteem and my independence. Still, I do consider myself relatively fortunate. My family have mostly been supportive, it only took me 10 months to be diagnosed (it takes some people years), and I am able to live in my own apartment (with a lot of support!). The last five years have not been easy, and I have suffered many painful losses, but I am thankful for the lessons I’ve learned. I do, however, feel like I’ve learned enough now! I’m ready for this to be over so I can live a healthy, active life again. Unfortunately there is no miracle cure, so I just have to be patient and take care of myself as best I can, while maintaining hope for a better future.

Zoë B.
Zoë B. @zoe-b
contributor

Reflections on COVID-19 From Somebody Housebound From Chronic Illness

This year has been an interesting one. I’ve heard many people describe 2020 as hellish, a waste, a write-off, unbearable and other negative descriptors. For me, the pandemic hasn’t really affected my life that much. I was mostly housebound before the pandemic, with little social interaction; so all the restrictions haven’t changed my day-to-day. As a result, I haven’t felt the same negative feelings about this year that many others have. The events this year have given most of the world a taste of what life is like for people in my position. It may not be exactly the same; they could still go out for walks, to the shops and they had the energy to do household jobs, but it did give people some insight into what the social isolation feels like. For many this has been tortuous and something they can’t wait to escape. I’ve honestly found it quite upsetting to hear people talk like this, as if the way my life looks is something terrible and intolerable. When I find myself lacking empathy towards people for whom this is new, I have to cast my mind back to when I first got sick and remember how unbearable it all felt then. I couldn’t wait for my struggling to be over and to get back to my “normal” life. But as time went on and this didn’t happen, I learnt to adjust and to accept what was going on. Humans are very adaptable and over time we get used to all kinds of struggles. This is why this year didn’t feel so bad to me, whilst seeming awful to many others. My relative struggle was not significantly increased, whereas for those who’d been living active, social lifestyles, their struggle compared to previously was greatly increased, giving them a greater sense of unease. It can be difficult for those whose absolute suffering may appear greater to find sympathy for those complaining about comparatively lesser problems, but it is important to remember that the way it feels for those people may be significant, and no amount of “thinking of those who have it worse than you” will make you feel better about your own situation. We can’t measure the suffering of others relative to our own, because it’s not; it’s only relative to their own experiences. Hardship is a very personal experience; one that different people feel in different ways, so it is impossible to truly judge the amount of suffering someone is going through. We all need to nurture our empathy and listen to others rather than make our own decisions about what they are experiencing. Though perhaps it wouldn’t hurt for people to think a bit more before complaining loudly about things that many have been facing since long before the pandemic and for whom there is no end in sight.

Community Voices

Chronic Life In The Time Of Corona

For me, a global pandemic has changed my life very little; apart from missing the occasional visits from friends, and the services I rely on being under extra strain and thus becoming unavailable to me. I don’t know what I would have done if I didn’t have people who lived nearby to bring me food and care for me. I know for some disabled and chronically ill people it has been very difficult because supermarket deliveries and other services they rely on have been overwhelmed and it has become impossible to book deliveries. The supermarkets have been prioritising some groups but many fall outside of this ‘priority’ group yet are unable to go to the shops themselves.

I am familiar with the feeling of being stuck as time passes by mercilessly, of watching my life tick away with little to show for it. This pandemic has given people a brief glimpse into what life is like for me and others who are chronically ill. I sympathise with the people who are going through isolation now for the first time, because I remember how hard I found it to adjust and to deal with the disappointment of cancelled plans at the beginning.

I’ve actually quite enjoyed everyone being stuck at home because, for a while at least, I don’t feel like there’s a whole world going on outside that I’m missing out on. Everyone has joined me in my way of life and it has made me feel less alone. Not everyone’s experience of this time has been the same, but it’s still nice to feel a sense of connectedness between myself and the rest of the populace, which in normal times is hard to find.

However, I have found myself struggling with comparing myself to others still, those who have been over-achieving still despite being in lockdown. The people who have learnt new languages, renovated their homes, or ran marathons. I have felt inadequate and lacking because for me, an achievement is just getting through each day. It’s now, more than ever, I have to remind myself to be kind to myself, as perhaps we all do. We don’t have to be constantly achieving to be worthwhile.

I have found it hard to hear all the messaging about “we will get through this” and people looking forward to “things returning to normal”. I know this brings comfort to most people, but as this is my normal it makes me feel sad that my way of life is seen as something to be escaped, to get through and be done with. It reminds me that I don’t have that same light at the end of the tunnel and that I might not get through this. I have managed to find some level of acceptance for my condition, and this messaging makes me feel invalidated and reminds me that this isn’t just temporary for me.

I know I am in a privileged position because I am secure in my home and have people to help me. I feel for those who have been suffering through this crisis: those working on the front line, in an abusive home, struggling financially and worried about the future, those suffering from mental health issues, those who have lost loved ones, and many more besides. I am not glad for these times and I do not wish people to suffer, but I am grateful that it’s given others a little insight into what life is like for those chronically ill and housebound. I hope that this time will help to open some doors (such as home working and live streaming) for disabled and chronically ill people, which until now have been closed, as well as fostering a greater understanding for what these groups have to endure all the time.

Trista McGovern's Photo Series De-stigmatizes Disability and Sexuality

I thought it was Just Fine. The ingrained issues with being ~born~ very different, as well as developing more or having chronic conditions. I thought it didn’t matter because I knew myself, and nothing phases me. I had a sound mind and a calm heart; logic and grit have always propelled me. But every now and then, it jumps out at me. It reminds me how much I know it infected my roots, discolored my branches and stunted my growth. Disability is the largest minority, and the only one that can suddenly become an attribute to anyone at any point in their life. But it seems to be the one talked about the least; sexuality being the least discussed topic. I’ve seen both persons with disabilities and/or visible differences as either objects to examine or as tokens for inspiration, but never ~just~ as humans within the umbrella of sexuality. Not in movies, photos, shows or even in your general damn conversations. It seeps in without having to ever be blatantly named or shown. The carbon monoxide of disability. I knew it was an issue when I was younger and couldn’t speak even to join a conversation. I knew it was an issue when my “friend” groped me and I was too frozen to stop it. I knew it was an issue when I had no fear, yet tensing up or shaking from intimacy was involuntary. I knew it was an issue when a partner affectionally traced my scars and I didn’t realize I reacted with crying. I knew it was an issue when I simply retold the notions the world gave me with a blank face, but it caused my friend to sob. I can’t speak for everyone with disabilities and/or major differences, but I know of some who can relate. I know it’s up to every individual to figure things out for themselves and how they relate to those around them — but how are we supposed to put ourselves in the conversation when we’re left in the other room? How do we get/feel invited to the circle when we seem covered in red flags? How can we rectify the twisted connotation that disabled means nonsexual when you perpetuate it? How can we process our layers of trauma when we’re too busy putting you at ease? How do we put ourselves out there when people with disabilities are three times more likely to be assaulted than literally anyone else? How can we expect healthy relationships when you’ll either love us or fuck us but rarely both? How could I have discussed attraction, desire, sexuality or literally intimately using my body when people have shouted, “What the fuck is that?” at me for just physically existing at a bus stop? How could I tell a crush I liked them after they cried because they felt bad for my condition? How could I tell you how I like it when you assume I completely don’t? How could I believe your generic compliment when yesterday a friend called me repulsive? How can I pretend it’s not still a problem when a stranger makes a video post mocking my old Tinder profile on the internet? How could I bring these things up when you give me that look on your face? This is not about my personal gritty details, or my various private relationships. I’ve already done the work. I’ve ripped off the bandaids. I’ve soothed the once debilitating hyperawareness of how I’m perceived and treated. I’ve dismantled the machine to rebuild it correctly and discarded the parts not useful to me. I’ve translated the twisted, ingrained language so I could decipher what’s real and what’s not. I’ve walked across the coals and consoled you for watching. I thought it was fine to just keep my progress and life private. Because it is what it is, right? But it’s not just about my lifetime of invisible obstacles I hid under the rug. It’s less about stepping in the light and more about pointing out the lion. It’s less about me and more about why you might feel uncomfortable right now. It’s about people who look different. The people who have been “othered.” The people who are wrongly infantilized. The people who have felt broken or lacking. The people who might be the most insatiable queer sluts you’ve ever met but get silenced into amicable pals. It’s for anyone subtly forced into the dark corners under the impression that they don’t belong and are definitley not welcomed. It’ll always be an issue in some form, but like with all things, I’ll keep trying to unlearn for myself and to show up for others. Fuck that, fuck you, fuck me. Photography: Emma Wondra Photography @emmawondra Models: Brian Pepinski @browniethunder + Trista McGovern @tristamariemcg Writing and concept: Trista McGovern @tristamariemcg

Kayla Cubbage

When Relationships End Because of Chronic Illness

“If you’re still sick by New Years, I think I have to consider breaking up with you.” I was sitting across from my boyfriend in a coffee shop and all I could do was look at him with a blank stare. There have been many moments in my life where I have felt completely out of control, this was one of them. “No pressure. I want you to focus on getting healthy and I don’t want you to worry – but this is where I’m at.” When you’re in a new relationship it’s all walking on air and it’s if the whole world is new. For me, while I was incredibly happy with the person I was with, it was also the beginning of my relationship with chronic illness. I was able to keep little down food wise, and my good days were far and few between. I valued the good days I had with my person and took any time I could get. Although I was happy and content, there were many terrifying things beginning to happen to my body that I did not understand. My relationship was one of the things making it bearable and keeping me grounded through it all. A week after that conversation in the coffee shop, my boyfriend broke up with me. All I could fixate on were the things wrong with me, and when I was finally diagnosed, the things about me that I had now labeled “deal breakers” for relationships. How could I possibly have a relationship with all these newfound complications? I began an unbearable self-destructive spiral as I was beginning to believe that I was only worth what my body could physically do. Even though I’m a loving supportive person, how could that matter when I struggled to balance standing up some days? The scars from that relationship stuck for a while. I went through a few self-destructive relationships thinking that they would help me feel some sort of better. Each time I would eventually retreat out of fear my physical ability would not be enough for someone. What I’ve come to find through the experience of it all is that it is important to me to be able to face the illness without someone holding my hand. There are times when it’s just my illness and I, and I’ve learned to be OK with that. I’ve learned more about how my illness works and the ways in which it is predictable and the ways it is not. I have the life-hacks in place. The tricks and other things that make my life work with an illness in the picture. I have many people that have loved and supported me through having an illness and many people who have gotten lost in the “deal breakers.” However, the biggest lesson I’ve learned is to not see myself as one. We want to hear your story. Become a Mighty contributor here . Gettyimage By: lolostock