Kirstie Edwards

@kirstie-edwards | contributor
Kirstie Edwards is a writer and single mama to four wonderfully weird kids. She loves to paddleboard, wild swim and feels privileged to live by the beach, in a whirlwind of teenagers and toddlers. Oh, and she is chronically ill and disabled. Read more here: mamamifsud.com

Why the Hardest Part of Dealing With Chronic Illness Is Other People

For me, the hardest part of dealing with chronic illness has and will always be other people. Silly, right? It’s not the pain or the sleepless nights. It’s not the constant hospital trips and treatments. It’s not the sickness and sadness that the life you thought you had, you have now lost. All of those things are heartbreaking and challenging, but fluctuate from day to day. Dealing with the general public doesn’t go away. Ever. Even when at my very strongest mentally, I tiptoe carefully around new people or in public places. I’ve experienced firsthand on a number of occasions just how cruel and intimidating people can be, when they feel they have the right to challenge my disability. There are of course an army of kind, considerate people that way outnumber those who are hostile, but that fear doesn’t ever quite go away. Look at me. I’m 38, a mother of four. Of athletic build. I don’t often wear makeup, do my hair or think beyond comfort when dressing. But I look normal, right? Just your average middle-aged woman. It’s no wonder people look baffled when I try to explain to them what’s going on inside my body; this huge battle whereby my cells fight each other and organs become compromised in the process. I look “normal.” You can’t see my joints eating themselves. You can’t see the muscle spasms shooting down my legs and arms. You can’t see my kidney struggling to filter my blood. You can’t see my heart’s third chamber cramping as it pumps life through my body. You can’t see my brain pulsating as it struggles to cope with the swelling at the top of my spine. You can’t see my gut attacking itself. You can’t see my lung lining puffed up and squished against my rib cage. You can’t see any of it, but it’s there. Like day and night, while my smile beams, the pain and darkness are hidden, but never stop existing. For every event I attend, there is a plethora of extra drugs and pain; normal life that’s so finely balanced becomes impossible in the days after. I will come to your wedding and party with the best of them ( who doesn’t love a good wedding) but unlike most of the guests, I won’t be able to walk without pain for days after. I’ll need help to get undressed at the end of the night and for the next few mornings. I won’t be able to do the washing or washing up for the next week. Getting in and out of the car will leave me in tears. We will eat food that the children can cook themselves. That’s what you don’t see. That’s the bit that all but those who live with chronic illness will never see. The payoff. The tough bit. I think it’s because we keep this part of our lives predominantly private and personal that people find it so hard to accept and understand the reality of living this way. It’s why when I get out of the car on a good day, walk normally into a shop or go to the beach for a walk, I feel ashamed. I feel a fraud. I feel judged. I live my life expecting that letter telling me I’m not sick enough, that I don’t look ill enough to get the support that I do. The bad bits, the pain, the struggles, all that stuff goes on privately. When you are really sick, do you leave the house? When you are in pain and ill, do you plaster that all over your Facebook page? Do you update your social media with every symptom and bad thing you feel, post only pictures of you crying and hurting? Of course you don’t. Most people don’t. They project positivity, show only the good bits, and that’s better, right? I made a choice some time ago, to live with joy in my heart. To no longer feel ashamed and hide away. To begin to live to my fullest potential. To treasure the positive, incredible things that I do have. To push myself as far as I could and to achieve as much as possible. I choose to fight for my life. To live. That is, by far, the hardest battle. We want to hear your story. Become a Mighty contributor here .

The Struggle of Being on Disability as a Single Mom

I don’t know how I keep managing this, but yet again I find myself in a tumultuous period of time. My kids have been off school for a couple of weeks and we have been blessed with good weather and physical ability on my part that has allowed us to go on some wonderful adventures together. Sure, I’ve had to make them watch a film when we get home so I can lay still awhile, but we’ve lived. It’s been great. Underneath this happy, primary-color-saturated series of pictures, though, the undertow is pulling. In amongst those happy, grin-filled days came a rather unwelcome visitor. Those of you that follow my personal story know I have lived in temporary housing for over five years. For those that don’t, here’s  a quick refresher — great academic job, big house, three kids. Successful. Health rapidly deteriorates, lose job, lose house, found out was pregnant the next day. So here I find myself five years later, now a single parent with four children, still a homeless statistic. Still working to create a new better life, but on benefits and totally beholden to the state. Going back to my visitor, or visitors should I say, the people at the local council housing department. Rarely do they come bearing good news; this time it was pretty damn crappy. The landlord who rents my house to the council as emergency accommodation is selling up, in part having been pressured to resolve the mountain of disrepair issues in my home, in part because it’s easier and more profitable I’m sure. This leaves me for the second time in five years with nowhere to go, this time with four children. The council of course have a duty of care to me and the kids, so we will be moved into another set temporary accommodation, a flat, house or B-and-B somewhere in my 1,376 square mile county. So most likely not in my hometown. Then bam, hit me again, the school allocations arrive and we don’t get option one, two or three. Instead we get put in the school closest to my home, although still not in walking distance for me. The school that wasn’t on my list for a wealth of reasons. I have spent 20 years building up a support network in my hometown and at the public services I use here. The schools and doctors all know me and my family, because we have a very distinct and specific set of circumstances. I have worked so hard to develop that support system that enables me to retain my independence but gives me a plethora of options when I am in crisis with my health. I have a list a mile long of contacts and people that willingly offer support and assistance, teachers included, when I have needed it. Instead, I’m expected to start from scratch. I don’t even know where we will be in three months’ time, let alone next September, so in many ways it feels pointless appealing this decision and as for the housing, I’m not being defeatist, but what can I do, really? Seriously, if you have some suggestions hit me with them, as I feel utterly powerless to control or change any of this stuff right now. Not where I live, where my children attend school, where I’ll be in the future. I can control nothing. I am a long-term sick and disabled single woman. I have four children. I can’t work and will never be able to in a full time sense again. I’m on state benefits. There’s a huge stigma to that fact, despite my best efforts to shake it. I’m a well-educated, smart, sometimes articulate woman who’s fought hard for every last thing, and I’m tired. I’m so tired of fighting for everything, every right I allegedly have. I’m tired of every single thing being a battle. It’s so hard being in my situation; I can’t even explain the constant conflict with the various agencies I deal with, aside from the battles with the general public and their ill informed opinions of people like me. It is no holiday being in my situation. I present to the world a predominantly positive, happy image as that helps me to remain positive about my, at times, dire situation, but it’s not real a lot of the time. It’s tough. It’s tears. It’s frustration. It’s anger. It’s self-pity. It is a constant fight to see the bright side or be positive. I can’t work my way out of my situation. I can’t retrain for a better option of my life, I can’t magically wipe away all the baggage that comes with me. I am utterly powerless. That’s the me behind closed doors that few get to see. Next time you make a flippant comment about people being on benefits, or how being off work long-term must be lovely, please, stop and think for a second about the reality of that choice. Do you really think I would choose this battleground over my well-paid, respected successful previous life? What would you choose? I choose to live with as much joy as possible. I choose to continue to fight. I choose to be happy regardless. But please don’t think that’s the easy option, that my life is wonderful without any work. It’s by far the hardest option available to me, it’s a full-time job keeping as healthy as possible aside from solo parenting four children. Then there’s dealing with our family unit being in crisis mode over and over through external circumstances — housing, money, school. All of us who are chronically sick or disabled have so many unwritten battles, it really is nothing like a holiday, laying in bed all day. On those day I have to it’s frustrating — I hear the birds singing and see glimpses of the world I want so desperately to be part of, through my window. I’m always aware of the million things I should or could be doing. We keep going regardless and grab the good bits, focus on the positives and desperately try not to sink under the plethora of pressures put upon us. We want to hear your story. Become a Mighty contributor here .

The Struggle of Being on Disability as a Single Mom

I don’t know how I keep managing this, but yet again I find myself in a tumultuous period of time. My kids have been off school for a couple of weeks and we have been blessed with good weather and physical ability on my part that has allowed us to go on some wonderful adventures together. Sure, I’ve had to make them watch a film when we get home so I can lay still awhile, but we’ve lived. It’s been great. Underneath this happy, primary-color-saturated series of pictures, though, the undertow is pulling. In amongst those happy, grin-filled days came a rather unwelcome visitor. Those of you that follow my personal story know I have lived in temporary housing for over five years. For those that don’t, here’s  a quick refresher — great academic job, big house, three kids. Successful. Health rapidly deteriorates, lose job, lose house, found out was pregnant the next day. So here I find myself five years later, now a single parent with four children, still a homeless statistic. Still working to create a new better life, but on benefits and totally beholden to the state. Going back to my visitor, or visitors should I say, the people at the local council housing department. Rarely do they come bearing good news; this time it was pretty damn crappy. The landlord who rents my house to the council as emergency accommodation is selling up, in part having been pressured to resolve the mountain of disrepair issues in my home, in part because it’s easier and more profitable I’m sure. This leaves me for the second time in five years with nowhere to go, this time with four children. The council of course have a duty of care to me and the kids, so we will be moved into another set temporary accommodation, a flat, house or B-and-B somewhere in my 1,376 square mile county. So most likely not in my hometown. Then bam, hit me again, the school allocations arrive and we don’t get option one, two or three. Instead we get put in the school closest to my home, although still not in walking distance for me. The school that wasn’t on my list for a wealth of reasons. I have spent 20 years building up a support network in my hometown and at the public services I use here. The schools and doctors all know me and my family, because we have a very distinct and specific set of circumstances. I have worked so hard to develop that support system that enables me to retain my independence but gives me a plethora of options when I am in crisis with my health. I have a list a mile long of contacts and people that willingly offer support and assistance, teachers included, when I have needed it. Instead, I’m expected to start from scratch. I don’t even know where we will be in three months’ time, let alone next September, so in many ways it feels pointless appealing this decision and as for the housing, I’m not being defeatist, but what can I do, really? Seriously, if you have some suggestions hit me with them, as I feel utterly powerless to control or change any of this stuff right now. Not where I live, where my children attend school, where I’ll be in the future. I can control nothing. I am a long-term sick and disabled single woman. I have four children. I can’t work and will never be able to in a full time sense again. I’m on state benefits. There’s a huge stigma to that fact, despite my best efforts to shake it. I’m a well-educated, smart, sometimes articulate woman who’s fought hard for every last thing, and I’m tired. I’m so tired of fighting for everything, every right I allegedly have. I’m tired of every single thing being a battle. It’s so hard being in my situation; I can’t even explain the constant conflict with the various agencies I deal with, aside from the battles with the general public and their ill informed opinions of people like me. It is no holiday being in my situation. I present to the world a predominantly positive, happy image as that helps me to remain positive about my, at times, dire situation, but it’s not real a lot of the time. It’s tough. It’s tears. It’s frustration. It’s anger. It’s self-pity. It is a constant fight to see the bright side or be positive. I can’t work my way out of my situation. I can’t retrain for a better option of my life, I can’t magically wipe away all the baggage that comes with me. I am utterly powerless. That’s the me behind closed doors that few get to see. Next time you make a flippant comment about people being on benefits, or how being off work long-term must be lovely, please, stop and think for a second about the reality of that choice. Do you really think I would choose this battleground over my well-paid, respected successful previous life? What would you choose? I choose to live with as much joy as possible. I choose to continue to fight. I choose to be happy regardless. But please don’t think that’s the easy option, that my life is wonderful without any work. It’s by far the hardest option available to me, it’s a full-time job keeping as healthy as possible aside from solo parenting four children. Then there’s dealing with our family unit being in crisis mode over and over through external circumstances — housing, money, school. All of us who are chronically sick or disabled have so many unwritten battles, it really is nothing like a holiday, laying in bed all day. On those day I have to it’s frustrating — I hear the birds singing and see glimpses of the world I want so desperately to be part of, through my window. I’m always aware of the million things I should or could be doing. We keep going regardless and grab the good bits, focus on the positives and desperately try not to sink under the plethora of pressures put upon us. We want to hear your story. Become a Mighty contributor here .

How I Found a New Purpose After My Diagnosis

It’s a tricky thing to embrace being off work long-term. I’m sure people think that would be amazing, but the reality is quite different. It’s lonely and tedious obsessing over every nuance of your health. Every. Single. Day. Life was previously so full of things that gave me meaning – my job, my role as a mentor, my continuing education, my social life. The void being forced by my body to leave all that behind has felt so difficult to fill. I have scrambled around lost for a very long time now. Today however, I awoke determined that phase of my life should come to a close. I have been listening to a lot of TED talks lately, both to inspire me and to continue my education. Although I can’t participate in academia the way I once did, I can still continue my life long learning, I can still keep trying to be a better version of myself. Whilst slowly stumbling along the seafront this morning in my hometown, I found myself listening to a wonderful lady named Emily Esfahani Smith give a speech on how “There Is More to Life Than Being Happy.” The title alone intrigued me; I’ve been searching relentlessly for happiness lately, in the void that my children starting their next steps has left deep inside me. It turns out that happiness is found, according to this lady anyway, in attributing meaning to your life. The problem is that for me, I kind of lost my meaning somewhere along the way. So what do I know for sure? What do I feel is factual about me in this moment? I am a mother with no children at home . I am a writer with nothing to say. I am a teacher without a class. I am a paddleboarder that’s too sick to paddle board. I am a sea swimmer that’s not allowed in the sea. You can see where I have struggled, right? There has been no outlet for my training and education, positive personal attributes or skills. I have felt like my body went off and left the core of me behind. That my life has spiraled onwards but left me behind. Miss Esfahani Smith then began speaking about “redemptive narratives;” a phrase I had heard before, but assumed applied only to the ex criminals or heartbreakers amongst us. Then she used the example of a football player once at the top of his game, who developed an injury that ended his career. He used to morosely tell people “I had such a great life and then everything changed. I lost everything. Life sucks.”He was miserable. After a significant period of self-reflection, soul searching and learning, he changed his own narrative. Instead he said, when asked, “I used to party too much, I never had enough time for my family, I valued the wrong things, I spent too much time and money on the wrong things. My life changed for the better. My story changed for the better.” He is now a highly regarded mentor for disadvantaged young people and truly believes that he has found his passion and purpose, when previously believed that he lost it forever more. Ultimately his previous history was factually the same, it was his retelling and perspective of that same past that changed. I’m not suggesting for a second that the process was easy for him. It could take weeks, months or in my case, years to flick the switch that changes the perception of what your life has thrown at you. I thought I had already done that – I realized what a privilege it was to be at home for my youngest’s preschool years in their entirety. That has been a huge upside of being sick. So many parents have no choice but to miss those years. I certainly didn’t get to have that with my other children when I worked all the time, often late into the night. You see, I thought I already had my redemptive narrative in place. I was a dedicated mother of four – until that same youngest child started school. Once again I found myself adrift and without purpose. I’m determined that this time, I will change my narrative for good. I want to write my own honest redemptive narrative, I want to finally heal and let go of the me that went before. To that end I’ve been taking steps to make the change. While wandering aimlessly through this period of self-reflection, I have begun to naturally do the things that come to me – that feel right in the moment. I began collecting pebbles, taking them home and painting them. It seemed like a positive way to fill some time and occupy my mind. Then that lead to me taking these pebbles on walks and leaving them hidden, hoping to brighten somebody’s day when they found a cheeky monster or flower as they wandered around, maybe aimlessly or distracted themselves. For some reason I started becoming really bothered by the rubbish and plastic everywhere. Like really, really bothered by it. Instead of rolling my eyes and moaning, I began picking up bits of litter with my grabber near where I hid my stones. Then my routine evolved to include picking up rubbish whenever I’m walking, or am out and about for any reason – hospital, doctors, kid related activities . I had been cleaning beaches with my family for a long time, but suddenly I found myself picking plastic up in the woods. Then before I knew it, I was picking it up around villages and outside school, then randomly in the street. People often look at me strangely, like I’m doing something wrong. My whole family was collecting plastic at a large beach in North Cornwall a few weeks back. We lost count of the number of people that stopped and stared as if we were maybe taking something we shouldn’t, or doing something illicit. They simply couldn’t understand why on a beautiful crisp winters day we would be on our knees collecting tiny pieces of plastic for hours. Well here’s the thing I’ve realized. It gives my life meaning. Its given me a sense of purpose to do these things. Maybe what I was supposed to do all along was to be a giver, a fixer, an organizer, a volunteer, to use my time helping others from my sickbed. I have accidentally became a warrior for the underdog – an advocate for other disabled people, someone who befriends the lost and lonely, I spend my days fixing myself and what I can in the world around me. My mental health needs me to get outside in the fresh air with a sense of purpose. My physical health prevents me from doing what I thought I was supposed to be doing with my life. So, I’m left at this life junction, where whilst flittering on the edge of my previously existence, I can see clearly. I have time. That’s one thing I’m very lucky to have that others do not. I have an excellent education, something I’m very grateful for. I’m a good public speaker, organizer and teacher, I can use that. I’m passionate and enthusiastic when I care deeply about something- that’s worth something right? Maybe this is it. My true purpose. Maybe I’m supposed to use my time for the greater good, not for personal gain. Maybe I’ve been looking in the wrong place all along. So here goes, I’m writing my own redemptive narrative. My body has taught me compassion. My diagnosis has given me space to think and communicate. My prognosis makes me want to make my life count, to give myself meaning, instead of waiting for it to happen. I’d ask you to wish me luck, but I’ve realized I don’t need it. I am the writer of my own tale now… We want to hear your story. Become a Mighty contributor here . Getty image by splendens

Why the Hardest Part of Dealing With Chronic Illness Is Other People

For me, the hardest part of dealing with chronic illness has and will always be other people. Silly, right? It’s not the pain or the sleepless nights. It’s not the constant hospital trips and treatments. It’s not the sickness and sadness that the life you thought you had, you have now lost. All of those things are heartbreaking and challenging, but fluctuate from day to day. Dealing with the general public doesn’t go away. Ever. Even when at my very strongest mentally, I tiptoe carefully around new people or in public places. I’ve experienced firsthand on a number of occasions just how cruel and intimidating people can be, when they feel they have the right to challenge my disability. There are of course an army of kind, considerate people that way outnumber those who are hostile, but that fear doesn’t ever quite go away. Look at me. I’m 38, a mother of four. Of athletic build. I don’t often wear makeup, do my hair or think beyond comfort when dressing. But I look normal, right? Just your average middle-aged woman. It’s no wonder people look baffled when I try to explain to them what’s going on inside my body; this huge battle whereby my cells fight each other and organs become compromised in the process. I look “normal.” You can’t see my joints eating themselves. You can’t see the muscle spasms shooting down my legs and arms. You can’t see my kidney struggling to filter my blood. You can’t see my heart’s third chamber cramping as it pumps life through my body. You can’t see my brain pulsating as it struggles to cope with the swelling at the top of my spine. You can’t see my gut attacking itself. You can’t see my lung lining puffed up and squished against my rib cage. You can’t see any of it, but it’s there. Like day and night, while my smile beams, the pain and darkness are hidden, but never stop existing. For every event I attend, there is a plethora of extra drugs and pain; normal life that’s so finely balanced becomes impossible in the days after. I will come to your wedding and party with the best of them ( who doesn’t love a good wedding) but unlike most of the guests, I won’t be able to walk without pain for days after. I’ll need help to get undressed at the end of the night and for the next few mornings. I won’t be able to do the washing or washing up for the next week. Getting in and out of the car will leave me in tears. We will eat food that the children can cook themselves. That’s what you don’t see. That’s the bit that all but those who live with chronic illness will never see. The payoff. The tough bit. I think it’s because we keep this part of our lives predominantly private and personal that people find it so hard to accept and understand the reality of living this way. It’s why when I get out of the car on a good day, walk normally into a shop or go to the beach for a walk, I feel ashamed. I feel a fraud. I feel judged. I live my life expecting that letter telling me I’m not sick enough, that I don’t look ill enough to get the support that I do. The bad bits, the pain, the struggles, all that stuff goes on privately. When you are really sick, do you leave the house? When you are in pain and ill, do you plaster that all over your Facebook page? Do you update your social media with every symptom and bad thing you feel, post only pictures of you crying and hurting? Of course you don’t. Most people don’t. They project positivity, show only the good bits, and that’s better, right? I made a choice some time ago, to live with joy in my heart. To no longer feel ashamed and hide away. To begin to live to my fullest potential. To treasure the positive, incredible things that I do have. To push myself as far as I could and to achieve as much as possible. I choose to fight for my life. To live. That is, by far, the hardest battle. We want to hear your story. Become a Mighty contributor here .

Feeling Overwhelmed Being a Single Mom With Chronic Illness

I have been quiet for a while. This tends to be because I am out living life as much as I can, going on adventures and challenging myself. Whilst this is true, on this occasion it’s also because I have been exhausted. Too exhausted to sit in front of my laptop and put words next to each other in any way that makes sense. Don’t get me wrong, I am lucky that I have been able to get out there in and on the sea, I’ve been to gigs and on trips, I have been volunteering and writing for other sources, helping people when I can. But the overriding thing I have been feeling lately is frustration. I am back in one of those phases where I feel overwhelmed by what is expected of me as a single mother and as a seriously ill woman. I spend my days making a million tiny choices between using my energy to do the washing up or to take the kids out to park, do I go for a swim and take care of myself or do I run the kids about and supervise yet another activity? All I really want to do is sleep, if I’m honest. To just curl up in a ball, hibernate and be left alone for a few days, or weeks… For whatever reason, I’m not sure why, these moments of pain, exhaustion and weakness are when my kids seem to fight, have existential crisis after existential crisis and challenge my patience. Just yesterday in a local store, two of them had a huge row that lasted a good 10 minutes over who got to hold these paint color strips. We didn’t even need the aforementioned strips; we were stuck in a queue to pay for the items we did need and neither of them would let it go. I was tired and fed up with parenting. I felt like screaming, but instead calmly told them to cut it out or else they would be going in the bin (the strips, not the kids). You see, there is a downside to this positive, strong exterior — people forget. They forget how ill I am, how much pain I am in every day, how exhausted I am. Of course I don’t want my kids to worry all the time — that’s not what I’m saying at all, I want them to live life as normal children that just happen to have a sick mother. So I’m loathed to say I struggle, that I find it tough, that no, sometimes I don’t cope. I’m human though, right? It’s been two years, 24 months, 104 weeks, over 700 days and nights. Every sickness to treat, every appointment to attend, every bill to pay, every tear to wipe, every show to watch, every meal to make, every form to fill, every speck of dust to clean, every nightmare to soothe, every bit of exercise or fresh air to take, every sock to wash, every decision to make, every difficulty to help them overcome. All. Me. It’s no wonder I’m shattered when you look at it that way. Does anyone really feel like they have their life under control the whole time? Are there any parents, single or otherwise, who feel like they are perfect and don’t screw up every other day? Are there any chronically sick people out there that feel they are enough even when in crisis? I wonder if these things I struggle with are normal or are they related to my health and marital status at all? Speaking to my siblings and friends lately, I figure that I’m not alone, I’m not incompetent at all, I’m ordinary. It’s completely OK to feel this way sometimes. Life as a grown-up is tough. Having children is tough. Of course it goes without saying that we are blessed and lucky to have the care of these little souls in our hands — that doesn’t mean it’s all laughter and smiles, though. Is anybody’s life that simple, when you look behind the lens? I guess the bottom line is, are you doing your best? Do you start each day as a new dawn and a chance to do better than the day before? Do you push yourself to live a better, happier, healthier, fuller life despite your limitations? Can you look yourself in the eye and say, “I’m trying?” Go and do it right now — what do you see? I see a woman who has lived. I see a woman still standing. I see a 39-year-old mother of four in the lines of laughter and age etched on my face. I see a woman who cares deeply about the world she lives in. I see a woman who wants to do better and be a better version of herself. I see me. Mama. Wanderer. Adventurer. Thinker. Writer. Volunteer. Teacher. I don’t see an ill woman. I don’t see a failed marriage. I don’t see all those things I worry about in these fleeting dark moments. I feel like I am doing the best job I can. I shout and sometimes cry. I have moments of deep despair over my ability to keep going, but i don’t ever just walk out because life’s too tough. I make mistakes. I do and say things and make decisions that I’m not proud of, but I am not ever afraid to say sorry. I don’t quit on myself or my kids even when they drive me potty. I don’t run away, even when inside i want to. I get up yet again at 6 a.m. to face the day in physical pain, with four humans who need me to keep going. I put one foot in front or another. I try. Some days, simply doing that is enough. I. Am. Enough. We want to hear your story. Become a Mighty contributor here .

The Struggle of Being on Disability as a Single Mom

I don’t know how I keep managing this, but yet again I find myself in a tumultuous period of time. My kids have been off school for a couple of weeks and we have been blessed with good weather and physical ability on my part that has allowed us to go on some wonderful adventures together. Sure, I’ve had to make them watch a film when we get home so I can lay still awhile, but we’ve lived. It’s been great. Underneath this happy, primary-color-saturated series of pictures, though, the undertow is pulling. In amongst those happy, grin-filled days came a rather unwelcome visitor. Those of you that follow my personal story know I have lived in temporary housing for over five years. For those that don’t, here’s  a quick refresher — great academic job, big house, three kids. Successful. Health rapidly deteriorates, lose job, lose house, found out was pregnant the next day. So here I find myself five years later, now a single parent with four children, still a homeless statistic. Still working to create a new better life, but on benefits and totally beholden to the state. Going back to my visitor, or visitors should I say, the people at the local council housing department. Rarely do they come bearing good news; this time it was pretty damn crappy. The landlord who rents my house to the council as emergency accommodation is selling up, in part having been pressured to resolve the mountain of disrepair issues in my home, in part because it’s easier and more profitable I’m sure. This leaves me for the second time in five years with nowhere to go, this time with four children. The council of course have a duty of care to me and the kids, so we will be moved into another set temporary accommodation, a flat, house or B-and-B somewhere in my 1,376 square mile county. So most likely not in my hometown. Then bam, hit me again, the school allocations arrive and we don’t get option one, two or three. Instead we get put in the school closest to my home, although still not in walking distance for me. The school that wasn’t on my list for a wealth of reasons. I have spent 20 years building up a support network in my hometown and at the public services I use here. The schools and doctors all know me and my family, because we have a very distinct and specific set of circumstances. I have worked so hard to develop that support system that enables me to retain my independence but gives me a plethora of options when I am in crisis with my health. I have a list a mile long of contacts and people that willingly offer support and assistance, teachers included, when I have needed it. Instead, I’m expected to start from scratch. I don’t even know where we will be in three months’ time, let alone next September, so in many ways it feels pointless appealing this decision and as for the housing, I’m not being defeatist, but what can I do, really? Seriously, if you have some suggestions hit me with them, as I feel utterly powerless to control or change any of this stuff right now. Not where I live, where my children attend school, where I’ll be in the future. I can control nothing. I am a long-term sick and disabled single woman. I have four children. I can’t work and will never be able to in a full time sense again. I’m on state benefits. There’s a huge stigma to that fact, despite my best efforts to shake it. I’m a well-educated, smart, sometimes articulate woman who’s fought hard for every last thing, and I’m tired. I’m so tired of fighting for everything, every right I allegedly have. I’m tired of every single thing being a battle. It’s so hard being in my situation; I can’t even explain the constant conflict with the various agencies I deal with, aside from the battles with the general public and their ill informed opinions of people like me. It is no holiday being in my situation. I present to the world a predominantly positive, happy image as that helps me to remain positive about my, at times, dire situation, but it’s not real a lot of the time. It’s tough. It’s tears. It’s frustration. It’s anger. It’s self-pity. It is a constant fight to see the bright side or be positive. I can’t work my way out of my situation. I can’t retrain for a better option of my life, I can’t magically wipe away all the baggage that comes with me. I am utterly powerless. That’s the me behind closed doors that few get to see. Next time you make a flippant comment about people being on benefits, or how being off work long-term must be lovely, please, stop and think for a second about the reality of that choice. Do you really think I would choose this battleground over my well-paid, respected successful previous life? What would you choose? I choose to live with as much joy as possible. I choose to continue to fight. I choose to be happy regardless. But please don’t think that’s the easy option, that my life is wonderful without any work. It’s by far the hardest option available to me, it’s a full-time job keeping as healthy as possible aside from solo parenting four children. Then there’s dealing with our family unit being in crisis mode over and over through external circumstances — housing, money, school. All of us who are chronically sick or disabled have so many unwritten battles, it really is nothing like a holiday, laying in bed all day. On those day I have to it’s frustrating — I hear the birds singing and see glimpses of the world I want so desperately to be part of, through my window. I’m always aware of the million things I should or could be doing. We keep going regardless and grab the good bits, focus on the positives and desperately try not to sink under the plethora of pressures put upon us. We want to hear your story. Become a Mighty contributor here .

Finding Hope When All Feels Lost

I’ve been feeling absolutely pants this week, worse than I have for a while, and it’s already been a crappy winter. Then out of the blue I got an email from my editor at The Mighty telling me another editor from Babble.com wanted to publish one of my articles. Sometimes I think the universe is trying to make sure I don’t give up when it feels I’m close to quitting. So today I am grateful for hope. I’m grateful someone, somewhere out there wants me to keep going and find the strength to keep fighting, when to be honest, I just want to quit and hide in my cave until further notice. Hope is a powerful tool. Hope is basically positivity — thinking things can and will get better, even if they might not. It would be so easy to give into the bitterness I occasionally feel. How unfair it all seems that I got stuck in this body and have to live each day with pain that causes silent tears to spring from within, despite my best efforts to hide them. I caught up with a really important old friend in the last few days, and he said to me, “I let go of the bitterness early on, nothing good can come from that.” We were talking about our failed marriages at the time, but it made me think actually he’s so right, not just about the hurt and pain you feel when a relationship ends or you lose a loved one, but also the bitterness that can eat you alive when you lose a job, a friend, a house — your health. Negative emotions can be so damaging if we let them set down roots deep inside us. This week has been a time of mixed emotions. I have been battling with some of the highest pain levels I’ve experienced for a while, a real peak of unpleasantness that has wiped me out, and I’ll be honest, has made me want to quit. Like quit everything — not in the sense that I want to die but in the sense that I want someone else to swoop in and plonk me in  a hospital or something where I no longer have to manage my meds, my home, my life. There, no one expects you to work, make the dinner, to write, to help with maths, to do laundry, do they? I just wanted to be left alone. After nearly two years, this week my ex asked for his belongings. I should have thrown some of these things out awhile ago, but how could I throw a lifetime of memories in the skip? But after all this time, I felt lighter and tears flowed freely as I found I could finally move on, I could let some of the bitterness go. The rush of liberating endorphins combined with the rush of pain at lifting these endless boxes totally floored me, and I wondered if I would get up again. Then I opened a bag shoved inside a box I was to return. Out spilled a lifetime of memories. An entire life captured in still images flowed over my sore legs until I was surrounded by every person I’ve known in my life. Each friend I have laughed with. Each man I’ve loved. Each family member I grew alongside. Every place I’ve been. My grandparents, now gone from this life. My babies, oh my babies, so small, and me looking so ill and young and afraid. I selected a few hundred and began the process of digitalizing and uploading them — some of the best memories of my life — sharing them with friends I’ve long lost touch with and some I see regularly but often forget just how far we go back. What a privilege and pleasure it was to give some documented history to the people who have shared my life so far. Among these pictures are some I will keep but never share. Because within them they hold so much pain. There’s one of me holding my 4-month-old son awkwardly, my arm in a cast and looking exhausted, older than I do now and just utterly broken and beaten down. In this picture, the woman, the mother, was holding so many secrets inside. She was dying a little every day. She was scared. She felt trapped. She was lost. She was alone. She had lied to every person who loved her and many who didn’t, to protect her baby. She had lost all hope. She was 21. Me. That was me. I never ever in the moments that picture and others like it were taken, could have imagined I would be where I am now. I had lost my hope, my dignity, my pride, my whole self and lied about it at the time to the only people who could have saved me. Now, 18 years later, yes, I have a  failed marriage, four children by two fathers, no paid job and my health is worse, but I have hope. I have peace. I know who I am and what I cannot and will not tolerate anymore. I worked my butt off in those decades  to qualify in two professions. I was successful in both until my health deteriorated. I gained a high level of education. I traveled a little. I learned new skills. I met new people. I read more books. I listened and learned from those I encountered in all the spaces and places I entered. I tried to help anyone I came across who needed a part of me, in case they also felt lost and alone. I think I’ve made a positive difference, even if it’s just a smile or an ear when there is no one else around. I am still fighting to give myself a new occupation and purpose. I forged a new life from the ashes of who I used to be. I found hope. I found peace. I “let go of the bitterness because nothing good can ever come of that.” So even when the darkness tries to take you, just hold on that little bit longer, as you never know when that email from an editor, that message from a friend or that photograph reminding you how far you’ve come, might fall into your lap. There is always hope, even when all seems lost. Hope is you. It’s your mind. Your truth. You. No one can ever take that away. 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 o r text “START” to 741-741 . If you or a loved one is affected by domestic violence or emotional abuse and need help, call The National Domestic Violence Hotline at 1-800-799-7233 . We want to hear your story. Become a Mighty contributor here . Thinkstock photo by lolostock

You Don't Have to be 'Old' to Have Arthritis

Let’s get straight to the nitty gritty here. I’m not old. Well my kids would say I am, but contextually I’m not. I’m pushing 40, but was diagnosed with a rare type of rheumatoid arthritis at 14 years old. I’ve spent a lifetime on and off crutches, in and out of wheelchairs and hospitals. I’ve spent forever looking pretty damn normal in between times. For a good portion of my 20s, I made up elaborate reasons why I looked like this….When I used a stick, crutches or splints, it often brought up the tiresome question, “What have you done to yourself now?” I’d reply with various responses: “I fell in a skiing accident.”“I went down in a bad tackle last week at football.”“My dog tripped me over.”“I was escaping a bear and slipped.”“Whilst running from an alien invasion I fell down a ravine.” It became easier for a while to make up stories than it was to try and explain how someone who looked so young and well could be so ill inside. Then there’s the word arthritis. It makes you think of your granny, right? It’s an “old person’s” problem, caused by aging and living a good, long, active life. Except at 14, I hadn’t lived a good, long, active life, and people saying,”Oh, you can’t possibly have arthritis at your age,” was surprisingly unhelpful. So I made up tall tales, mostly to amuse myself and occasionally because I just thought, “I can say anything right now. You don’t really care about my answer. It’s not going to change your life, so what does it matter?” The problem with much of the media is that a lot of these rare and unusual diagnoses are overlooked, or in my case hugely overgeneralized. Arthritis. We all know what that is, right? In fact, everyone knows what osteoarthritis is, just not rheumatoid. Pretty much every elderly character on TV ever has complained of creaky knees, hips or back, the weather effecting their bones, their arthritis giving them problems. Osteoarthritis is a degeneration of the bones, rubbing away through wear and tear. Rheumatoid arthritis is a swelling of the tissues within the joints, that causes inflammation, pain and joint deformation. They are very, very different with two very different causes. One comes with life, one is caused by the immune system. One generally comes with age. One can effect anyone, even very young children. Rheumatoid arthritis has the added fabulous bonus that it can also inflame organs, and has a whole host of other invisible complications and symptoms that no one can see, and will invariably struggle to comprehend. Next time someone youthful tells you they have arthritis, please don’t say: “Oh you are too young.”“Oh you look too well.”“Isn’t that an old person’s problem?”“How old are you?!”“My nan/grandad/elderly relative has that.” Don’t. Please. Don’t. Just say, “Hey that sucks. Is there anything I can help with?” Or ask compassionate questions: What’s the treatment? What strategies do you use to manage? How has that changed your life? Ask me anything about my life, just don’t, for the love of God, tell me I’m the same as your gran, or too young to have arthritis. Evidently I am. I’ve stood right in front of you, having been sick with this disease for 25 years, and I’m not yet 40. Yes, I definitely do have arthritis. Plenty of specialist doctors did, in fact, extensively check before labelling me an “old lady.” Thank you. We want to hear your story. Become a Mighty contributor here .

The Power of Social Media When You Are Sick

It’s winter and the short days of cold, windy rain are taking their toll on my body. I hurt. I’m sad. I’m ready for a break from the relentless pain and monotony of feeling terrible. Of course I don’t dare say that out loud. I don’t show that part of my life to many people. It’s private. It’s my struggle. It’s a battle that I let few help me with. There are a number of reason for this. Firstly, I feel like I am not great company when I’m struggling to deal with the higher levels of pain. I’m quiet, introverted and can barely smile or speak. For someone known for their loud, positive, chatty, bossy nature this part of me can be quite shocking and it can make people worry. I haven’t got the energy reserves on those days to explain and to reassure others. So I batten down the hatches and cut myself off for a while. I survive. I do what needs to be done for my children to remain safe and well, but that’s it. Secondly, I can not stand the idea of people pitying me. Of course it’s tougher than most people will ever know to fight as hard as we do, but do I want the sad head tilt and sympathetic nod? Not really. I just want to be treated normally. By all means, ask me how I am doing and if there’s anything I need help with, but talk to me about the things you’ve done or read, ask me about all the millions of other things that make me who I am. I still have thoughts, ideas, opinions and a life outside of my diagnosis. Thirdly, when you live every day locked in battle with your body, sometimes it’s nice just to forget and to play make believe, to be just those parts of you that you can accept in that moment. For me this would include showing pictures of me and my kids in the countryside or smiling after a swim or paddleboard. Maybe it’s me rambling on social media about the state of the world in various groups or debating Brexit, housing, Trump, war or any number of things that in that moment have zero to do with my health. I could be talking online about when I used to dance and sing, or play football. I could upload pictures that make me look healthy, happy, positive and strong. I choose to be that person. To fight, to reflect and grow, to try my absolute damndest to stay positive as far as the world can see. Then I read the most horrifying of articles. A woman is currently being taken to court for fraud, because apparently she doesn’t look sick enough. She looks too happy on social media to be disabled. She shows too much positivity in the way she presents herself online. She isn’t defined by her illness, pain and abilities because she publicly smiles and fights, so she is being punished. I don’t think I have ever read an article that made me feel so personally vulnerable and anxious. I immediately went through my own social media — damn it I look happy! I’m outside and smiling. It appears that I’m living the full life of an ordinary woman. I’m in deep trouble. Should I post pictures of my boyfriend or kids putting my shoes on and off? Should I document the days of rest I have to have, to be able to smile and get outside at the weekend? From now on each time I use a mobility aid, should I photograph it and publicly share it? Do they want to see me each day crying or with pain etched on my face, simply to reassure you that I am indeed sick? Is this what I should do? Or do I quit? Do I leave the lifeline of social media instead? A place where I can be the me that is everything, the place where I can get out even when I am trapped inside. The place where I reassure my family and friends that I am OK, the children are OK and that we live a wonderful happy life despite everything that’s thrown at us. Social media is so many things to so many people. For me it connects me to the outside world and makes me feel like I exist when I feel myself fading away in a blur of pain and distress. By liking people’s pictures, commenting and sharing things that interest me or I love, it reminds me who I am and what my place is in the world despite the fact I may have been stuck inside for days on end. It helps me live. I know many people would probably say just don’t share, don’t comment, don’t interact…. become one of those Facebook ghosts that sees everything but is never evidenced to have been there. What those people don’t understand is that they get to socially interact every day with people at work, in the shops or at the various clubs and activities they do. I don’t always have that luxury and if I choose to become an internet ghost, I feel like I’ll be slipping back into nothingness and isolation when I’m in a bad spell. No social contact. Isolation. Loneliness. Zero occupation. One of the biggest things that changed how I felt about my health was the internet. I’m old enough to have only known the internet as an adult, from my mid-20s onwards. I had a decade of being sick with no external support, and it was so very, very lonely. I read and I watched, but I had no one to share my discoveries with or discuss my opinions. I’m lucky and have an amazing family and friends, but they have their own lives, jobs, kids, and can’t always be there. The reality is that when you are ill, stuck inside and can’t cope with physical company, being able to connect with another human being is priceless. The internet becomes a lifeline. It grounds us, it connects us and it helps us define ourselves as more than just existing. It helps us to live. It helps us see past our prognosis. It helps us be every other tiny thing that we are other than sick. Should we be punished for that? We want to hear your story. Become a Mighty contributor here .