Warning: This article discusses mental illness and thoughts of self-harm.
Like many people, I’ve always enjoyed watching films. Films tell us a story about someone’s life and struggles and shows us how they were able to overcome those obstacles that they had to face. About a year and a half ago, I had gone through a rough patch in life where I didn’t know where to turn to. I was going through college and my first real break up, along with knowing that I was going to have to live with Cerebral palsy for the rest of my life.
I didn’t know where to turn to as nothing I did seemed to help me cope with the many different emotions that I was facing at the time. Then a friend recommended that I watch ‘Perks of Being a Wallflower’ which is about a high school freshman named Charlie who’s an aspiring writer who loved journaling about his everyday life but has a difficult time handling depression.
My connection with the main character:
From the minute I first saw Charlie on my screen I automatically connected with him and what he was going through as someone who was at that point in her life where everything felt very confusing. I had thought that I had everything figured out and I was now adapting to changes at the time that changed my outlook on life.
While watching ‘Perks of Being a Wallflower’ I felt as if I was Charlie in the movement, and he was speaking to me directly. I related to him as he was going through being the outcast of his fellow classmates because he was the one who was not ordinarily. This is just like myself since I have Cerebral palsy and use a wheelchair as my legs. So, I tend to be the outcast of society.
At times this could all be too much for me to handle. Watching ‘Perks of Being a Wallflower’ allowed me to be confident in my life and the person that I am, as well as the life story I have to tell.
How what this movie taught me applies to my life:
‘Perks of Being a Wallflower’ reminds me that despite the bad chapters in my book I have to keep writing my life story no matter how bad the chapters are. It reminds me that it’s just one bad chapter, it’s not my whole life story. And just like Charlie overcame his obstacles and challenges of being an outcast with very little confidence, I am reminded that I’m not alone and I will overcome anything that comes my way.
Watching ‘Perks of Being a Wallflower’ also helps me forget about the lack of mobility I have on the left side of my body due to Cerebral palsy, which can lead me to feel suicidal at times and feel trapped within my own mind and body.
Watching this film takes away any negative thoughts I might have about myself and my abilities and helps me to continue living my life as a disabled woman with Cerebral palsy. I will be forever grateful for ‘Perks of Being a Wallflower’ and its message.
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
IBD, Perianal Crohn’s Disease, Abscess, Fistula complications, Sepsis, Crohn’s Arthritis, Pyoderma Gangrenous, DVT, blood clotting disorder, low blood pressure, Tachycardia and an irregular heartbeat with palpitations, Migraines, Body Dysmorphia, Depression, Anxiety, Agoraphobia, PTSD, hair loss, insomnia, self-isolation.
No, you didn’t just read a list of side effects from a newly FDA approved medicine. What you did read are just some of the things I have to battle with and continue to overcome daily. It’s unfortunate, but I can continue on with that list for quite a while. Being diagnosed with a chronic illness at 27 is utterly perplexing, as I am sure it is at any age. You live this life and you have your plans, goals, aspirations, and, at the flip of a switch, that all changes. I was completely blindsided and continue to be with every new diagnosis.
Finding my “new normal”
Once I was diagnosed, I would hear from other IBD patients and medical professionals about the importance of finding your “new normal”; a phrase I found to be so true and necessary, as I myself was discovering what that would mean for me. My struggle came into play when I realized no one around me seemed all that open about the process that preceded this new life I would be creating for myself. With the daily challenges associated with chronic illness, figuring out how this new life looks can feel as if you’re driving at night in a rainstorm, with your headlights off, just praying you’re on the right side of the road.
I had never really been exposed to the chronic illness lifestyle. Even though it has now been 2 years, the chronic part is still something I struggle with regularly. It’s easy to forget that this illness is for life. It definitely doesn’t help when the “able” ask you if you’re better yet. Especially, when after every procedure, that thought passes through your own mind, only to disappoint you again because you know that “better” will never be a permanent option.
I was beyond lost at the beginning of my chronic illness journey. I was scared and I felt alone. I was the only one in my world who could speak my language and everyone was staring at me like I was a circus clown. As if the chronic pain wasn’t enough, I was now facing emotional turmoil as friends, who I considered family, began to drop out of my life. I was left to fend for myself the same instant everything I knew changed; with only a few true friends remaining by my side to help navigate the most difficult challenges I’ve ever faced. True colors began to shine in moments of crisis and I was seeing rainbows.
Highly medicated and awkwardly positioned in my hospital bed, I felt as if I was being tested. I can only describe my time in my post-op, shared-room as a character-building experience. I squinted one eye shut to combat the drug-induced, kaleidoscope vision so I could begin to research how to achieve this “new normal”.
Finding support
I stumbled across the Crohn’s and Colitis Foundation and sent them an email. Once discharged from the hospital and successfully escaping the grips of my home nurse, I managed to make it out to a few events. I started meeting people, people like me, only they were more informed and experienced with their place in their chronic illness journey. It was through these gatherings that I became connected with my mentor, who now is my closest and dearest friend.
We began going to support groups together and she got me to see a psychologist who specialized in IBD. I had a connection with my mentor-turned-best-friend that I’ve never experienced before. I wasn’t aware that relationships like that were real. I finally wasn’t alone on my planet where no one could figure out what I was saying. I was the least lonely I had ever been, and we were in our very own world where we finished each other’s sentences, showed up for surgeries, and answered the phone late at night just because the other couldn’t sleep. We support each other in every aspect of our lives and I slowly began to realize the steps needed to be taken to get to my “new normal”.
It was through our relationship and her perpetual support that she encouraged me to stop hiding behind my fears and do what I love. Out of this came The Lemon Blog, my passion project. The Lemon Blog is a place that supports all abilities and provides encouragement, mentorship, community, advice, an ear to listen, or even a shoulder to cry on when needed.
I cannot stress enough the importance of having a solid support system. Sadly, not everyone has that available to them, which is why The Lemon Blog has become so important to me. Not only have I made amazing connections with these warriors, but we check on each other regularly, we cheer each other on, offer support when needed, words of encouragement when down, and have some pretty good laughs along the way.
People like Meena at The Unchargables help pave the way for the rest of us and I am honored to be writing this for their site. Thank you for asking me to share my story. I encourage everyone to share their own; you never know who it may help. I’d love to see you over at thelemonblog.com or shoot me a direct message through our Instagram @the.lemon.blog – we’d love to have you be a part of our Spoonie Community and help you to discover you own New Normal.
About the Author:
Marie is a chronic illness warrior who runs The Lemon Blog, which is her passion project. Marie created this blog with the aim of supporting fellow chronic warriors and helping them find their own “new normal”.
One of the biggest misconceptions about people with disabilities is that we have no desire to date or have no understanding of what a relationship consists of. I can tell you first hand that this is false. For as long as I can remember, I’ve always dreamt about the day I will finally get married. I dream of having a ceremony in the smoky mountains of Tennessee, and getting to ride off afterwards in a red 1978 Ford Truck with my future husband.
What I’ve Learned About Dating with Cerebral Palsy
Dating has been one of the most difficult parts of my life. Ever since I hit puberty in middle school, I had an interest in dating and having a boyfriend, like many young 13-year-olds would be. However, I often had trouble with this because boys wouldn’t dare to give me the time of day. This was mainly because of my Cerebral palsy, they just didn’t want to deal with the judgement and stigmas related to dating someone like me, and I can’t blame them for thinking that way.
Love Yourself First
All of this taught me that the first step of meeting and getting to know someone is being in love with yourself first, while accepting your circumstances and your situation. Once you accomplish this, then you can meet someone who will look past your disability and love you for you. Loving yourself when you have a disability may not be the easiest task for some people, but it helps you to move forward when you’re single and want to put yourself out there into the dating scene as someone with a disability.
Picture of the Author: Tylia Flores
If you don’t love yourself, how can you expect other people to gravitate towards you and want to get to know you? Self-confidence is magnetic. If you don’t love yourself and accept that you are who you are and acknowledge that you were made this way, then others may find it difficult to love and accept you as well.
It all starts with you and whether you are willing to try loving yourself, including the way your medical condition shapes you, as well as how you perceive your life as a person with a disability.
I’ve also learned that not everyone you have a romantic interest in is going to return those feelings, and that’s okay. That doesn’t mean there’s anything wrong with you or the person that you are. You just have to accept their feelings and move on from it, while remembering that you’ll find to love you no matter what struggles you experience and what situation you’re in.
Dating May Be Hard, But It’s Worth It
All throughout my experience with dating with a disability, I’ve realized that while it isn’t an easy process, it is a worthwhile one. It is essential that no matter where you are in your journey, you take time out and learn to embrace yourself and your situation. In my case, I need to acknowledge my wheels, the adventures I get to go on because of my Cerebral palsy, and all the things that having Cerebral palsy has taught me over the years. I have learned a lot about myself during the experience of finding love with Cerebral palsy.
Although my life hasn’t been the easiest, I have learned that loving myself and my disability come first are foremost.
About the author:
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
According to the Merriam-Webster dictionary, the word “chronic” is defined as: continuing or occurring again and again for a long time, always present or encountered. The word “pain” is simply defined as: mild to severe discomfort and suffering. If you combine the two definitions of the words “chronic” and “pain”, we reach a sole statement that describes the life of those whose “normal” has become something most people cannot comprehend: mild tosevere discomfort and suffering that is continuing and occurring again and again for a long time, and is always present and encountered.
Chronic Pain is Life Changing
As is the case with a lot of chronic pain warriors, my life didn’t start out this way. There was once a time when my life didn’t involve seeing my doctors more often than my friends; when pharmacy visits didn’t happen every other day; when I didn’t have to end up in the ER on a Wednesday night, curled tightly into the fetal position; when I didn’t spend my nights tossing and turning because of the insomnia; when I didn’t have to open a medication bottle multiple times a day.
There was a time when when I didn’t have to research for hours on end just to understand what happens beneath my own skin; when I didn’t have to sit and rest after a shower; when I didn’t have to try to explain things about my body to other people that even I don’t understand fully; and a time when I wasn’t intimately familiar with the definition of “chronic pain” as a result of life has become every minute of every day.
Everything changed on of March 21st, 2011. It happened in the blink of an eye. It was a Monday, a bright and sunny afternoon, when an overthrown softball collided with the back of my skull as I was leaving our school’s softball field. I don’t remember much of that incident, except for three distinct things: my coach’s voice close by which was ricocheting around me like a bouncy ball; the cracking sound of the softball hitting my skull resounding in my ears like an echo in a cave; And lastly, the pain. The pain is what I remember the most, and rightly so, as it hasn’t stopped in 8 years, 5 months, and 25 days.
My Chronic Pain Journey
Throughout these years, months, and days, it has been a perplexing, debilitating, yet rewarding and valuable journey. There have been countless moments where I can’t even seem to even hold myself up anymore, falling to the floor and weeping for the soul that’s exhausted and depleted, and wondering if this is a life worth even living. I watched the doctor that I had trusted for 4 years look me in the eye and confidently tell me “I don’t believe you’re in that much pain.” I had turned to her to help me find answers to my never-ending questions and search for treatments that would help give me just a small glimpse of blissful relief, and this is what she said to me. She didn’t see the way I collapsed in the hallway; she didn’t hear my sobs outside of her pretentiously white-walled office; she didn’t see my family pick me up off the ground, all the while telling me repeatedly “we believe you.”
Living chronically ill isn’t for the weak, it has more hard moments that you would ever be able to imagine. However, there are also some moments that have made this journey that I’ve been living worth it in the end. For example, it has taught me how self-love is one of the most important things in life. One morning, as I stared into the full-length mirror that I attached to the back of my university dorm door, all I could see was a shadow of someone I once knew, someone I couldn’t even recognize. Staring at my reflection with my roommates laughing on the other side of the door, I said to my reflection, “I am going to love you one day, give me some time.” I realized that just because our bodies feel like a prison, that doesn’t mean we should treat them that way. And sometime later, before I even knew it, I stared at that same reflection and saw something else. I saw someone who adored their body, even if it malfunctioned.
Living life with chronic pain, a mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, always present and encountered, might be hard for others to understand, but it’s an understood normal for us chronic pain warriors. We wake up every morning to endure another day, with a strength we didn’t know was possible. But it’s so important to love yourself, despite the reality your body puts you through. I loved myself as I walked across my university stage and received my college diploma; and I also loved myself as I sat in the ER in excruciating pain on a Tuesday night. Your body deserves the love you have to give, too.
When it comes to experiencing grief, I find this quote by Terri Irwin to be very accurate: “Grief is never something you get over. You don’t wake up one morning and say, ‘I’ve conquered that; now I’m moving on.’ It’s something that walks beside you every day. And if you can learn how to manage it and honor the person that you miss, you can take something that is incredibly sad and have some form of positivity.”
A string of thoughts swirls around my head when I think about my friend Daniel’s battle with brain cancer, on top of having Cerebral Palsy as a fifteen-year boy with so much ahead of him.
I think things like: Another year has gone by without you, but it feels like just yesterday that you said goodbye to this world and the chapters of your book came to an end. But there’s not a day that goes by that I don’t think about you or the battle you faced. You were very brave and courageous and for that, I’m proud of you.
It’s been nine years since he’s been gone but, in all seriousness, it still feels yesterday.
Survivor’s Guilt
Within
the first year of Daniel passing I struggled to come to terms with my grief and
that cancer had taken my best friend, who was like a brother to me. He was my
biggest supporter next to my mom. I became very angry at the world, to the
point where I started to become more rebellious. As a result my grades started
to slip.
I was finding my freshman year of high school so difficult that I started to skip classes. I didn’t care about my future. I would often ask myself if there was anything I could have done to save Daniel’s life. I would even wish that it were me who got cancer instead of him.
The guilt
was isolating. I couldn’t go out and do the things I enjoyed like going to the
bookstore or attending football games without feeling guilty about it. I would
often say things like “too bad Daniel can’t be here
right now”. To avoid feeling like this I would stay home as much as possible.
As you can imagine, this was not good for me. At all. I would post about him every day on social media, writing about how much I wanted my brother back. A part of me hoped God would read my post and say: “Here’s Daniel back”. It was like I had separated myself from reality as a way to cope; away from the reality that Daniel was gone and that I had to move on.
Moving On:
Moving on wasn’t easy by any means. A year after Daniel’s passing, I decided I wanted to support children fighting cancer; so I would send toys to the kids in Hospitals. It was a good way to help me cope with my grief as well as setting aside the anger I felt.
Moving on from such grief requires a lot of bravery. “There is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think.”- Winnie the Pooh
A year later I went on to write James Ticking Time Bomb in honor of Daniel and his battle with cancer. I’ve been writing with the aim of bringing awareness to childhood cancer ever since.
Though I’ve Moved On, I’m Still Grieving
It’s nine years later and I am now 24 years old and in college. I’m doing what I love most, which is spreading awareness for causes that matter to me through writing, the one thing that helped me cope the most with the grief of Daniel’s death. I still rely on writing as a coping mechanism to help me get through my grief as an adult. So now, every time I open up my laptop and begin writing, it serves as a reminder than Daniel’s spirit is always with me, and that I’ll see him again someday.
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.
1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”
Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.
2. “Oh, I’m tired too, I know exactly how you feel.”
Ah, Chronic
Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have
no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that
you could sleep for 16 hours and still wake up exhausted. You have to rest
after having a shower or bath because you’re shaking so badly from the
exertion. Chronic Fatigue is like swimming in concrete, every movement takes
enormous amounts of energy and the simplest tasks like brushing your hair or
washing your hands take effort and concentration.
Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!
3. “Have you tried (fill in the blank)?”
I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.
When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.
4. “Well, you don’t look that sick.”
This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.
5. “When are you going to get better? You’re always in poor health.”
Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.
When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.
I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.
Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.
Writing may be one of my biggest loves in this life, but it’s also one of my biggest struggles thanks to my health. As a person with chronic illnesses and major mental health struggles, I don’t write as much as I would like to or as much as I used to.
I still find the same release in writing that I always have found but, more often than not, I just can’t bring myself to write. Post-exertional malaise from my ME, and cognitive difficulty from my fibromyalgia makes the activity of writing difficult in itself, but there’s more to it than that for me; a different kind of blockage that can be hard to pin down.
The Blockage
This piece has been doubly difficult for me to write. Not just because of the writing process itself, but because of the subject matter. I chose to write an article for Mental Health Week about depression. And depression makes me lose interest in the things I love. There’s definitely an irony in struggling to write about depression because of depression, isn’t there?
I want my writing to make others feel less alone, but how on earth was I going to approach this topic? When it comes to something as multifaceted as mental health, it can be difficult to know where to even start. My brain quickly got to work on bullying me.
Why would anyone want to read something you wrote anyway?
You have nothing interesting to say. All your work is bland and rubbish, just like you.
I don’t know why you even bother.
There are too many better writers out there. You’ll never be taken seriously.
Your thoughts aren’t valuable enough to be paid attention to.
So here I am, scrambling around inside my foggy brain trying to ignore the bullying thoughts in my head and to figure out whether anything I have to say about depression will even make sense enough to shape into an article.
Describing The Indescribable?
Up until a few years ago, I thought of depression as an intruder. It would fully catch me off guard, kind of like a huge predator stalking in the shadows and then jumping out in front of me when I least expected it. Some people describe depression as a black dog which won’t leave you alone. As my life has gone on, I’ve come to see it more as some kind of dangerous plant, thriving in the darkness and slowly growing; creeping its way into my life until I’m swamped.
Its roots are deep, and its vines reach further and further into my present consciousness until I can feel them grasping me by the limbs and the throat, pulling me backwards into the dark. Sometimes the vines loosen their grip and retreat, and I can breathe again but, even then, I still know they’re only biding their time. They’re still there, lurking…ready to creep out of the shadow again at some point. And as the years have gone on, each trauma or stress that life has thrown my way has only strengthened the roots in those murky depths of my psyche.
As well as the stigma, there’s a lot of misconceptions out there about depression. People often think that feeling down for a few days or a couple of weeks is being depressed. It’s not. That’s just feeling blue, which is something that most people experience at some point in their lives. Feeling down occasionally is part of our normal range of human emotion, just like feeling sad is. Feeling sad when something bad happens is not depression. That’s a normal reaction to something bad happening, and will usually dissipate with time. When the low mood persists long-term, that’s when it becomes a problem.
Doctors and psychologists usually look out for common symptoms when diagnosing depression, such as a loss of interest in things that you normally enjoy, feelings of worthlessness or of despair, feelings of unrealness and even urges to harm yourself in some way. Check out this guide from the charity Mind to find out more about symptoms, causes and potential treatment options. Their website is also full of resources about other mental health disorders and information about where to find help.
The Numbness
Perhaps my least favourite symptom that comes from being in a depressive episode is what I now call the nothingness. This is something that I have experienced since I was a teenager and still frightens me to this day when it happens. It’s not that I feel sad, or upset or even down, I just feel…nothing. In these times my emotional range seems to just shut down. I can’t feel anything or recall how emotions normally feel. It is the complete absence of feeling, and I wouldn’t wish it on anybody. It is the most isolating thing I have ever experienced, and every time I feel my mental health slipping I become fearful of that emotional numbing.
When I’m numb, I would kill to feel sad or angry because then at least I would feel something. Many people I’ve tried to express this to simply can’t wrap their heads around it. I discovered a few months ago that this kind of emotional shutdown can be a response to past psychological trauma.
Going back to writing, it’s really no surprise that I struggle to do it a lot of the time. It’s sometimes like the parts of my brain that feed into creativity have been boarded up like an old abandoned house. It’s like somebody cauterized by ability to even think clearly, let alone comprehend those thoughts and translate them into words.
Depression
Depression makes it feel as though my brain just won’t work in the way it’s supposed to; the way I know it can work. It feels like there is a thick cloud of fog filling up the spaces in my head. Things don’t seem right; things don’t make sense. I can’t even make decisions. The smallest of decisions feels disproportionately impossible. Do I want a glass of water or a glass of juice? Do I prefer red or blue? Am I a good person or a bad person for the answers I picked? I can’t decide what I want to watch, what I want to read, what music I want to listen to.
I know that I’m passionate about things, somewhere beneath all the fog, but those things seem shapeless; far away from me. I feel completely disconnected from myself, as though the body and mind I inhabit do not belong to me. I interact with my surroundings, but it’s all robotic. I’m not sure what is real.
It’s a cruel state of mind to be in. Perhaps it’s even crueller that all of this is invisible to the world around you and can be masked by a simple “I’m fine!” when somebody asks you how you’re feeling.
We have to be brave enough to answer “I’m not fine.”
About the Author:
Charlotte is a 26 year old writer from West Yorkshire in England. After a spinal cord tumour left her disabled at 19, she started writing about her experiences alongside her university studies. Her blog is called Of Books and Stardust. She also has ME and fibromyalgia, and has experienced mental health problems for most of her life. She writes to raise visibility and to help others feel less alone. Charlotte adores literature, has always loved caring for pet bunnies (or do they care for her?) and is passionate about spirituality, paganism and witchcraft.
Living with a chronic illness of any kind can truly impact all aspects of one’s life and make many things difficult. Poor health can put a strain on everything from your job and work life, as well as the relationships that you hold most dear. Over the years I’ve found that one of the hardest parts of living with a chronic condition is keeping your relationships healthy. While this may seem odd to those who haven’t walked this path, sadly, it’s very much an issue.
Until you are sick, you don’t see how much a strain can be put on your relationships by a chronic illness. When you have to routinely cancel plans or spend long periods at home in bed, it can be incredibly hard for those in your life to understand. This especially occurs when you have an ‘invisible’ condition such as Lupus or Multiple Sclerosis.
There are many things that those who deal with some kind of chronic illness (myself included) wish our able-bodied counterparts could understand. In this article, we are going to look at 5 things we wish our friends and family understood about living with a chronic illness.
I DO NOT like cancelling plans
Contrary to many people’s beliefs, most of the time we don’t like cancelling plans. Sure, there are times when we just don’t want to do something or go anywhere, but that can be the case for anyone, NOT just those who are chronically ill. Most of the time we would much rather be out and about doing things and being around people than be stuck at home. But sadly, sometimes that is not an option and we have to cancel plans. It is often easier to assume the worse than it is to find out what is really going on. People can often draw their own conclusions instead of asking why people with chronic illness are doing things like cancelling plans. I have found that in order to help those around us understand what it’s like to live with a chronic condition, we have to be willing and ready to be open about our health. We also have to be willing to work with those closest to us to help them understand what it’s like on our side of the table.
My health does not define me
My health does not define me – While our health may impact almost every aspect of our life, it is not all that we are. For instance, I am not just Amber who has Lupus. I am so much more than that. I do have lupus, but my illness is not what solely defines me. I am Amber with Lupus, who is a daughter, a sister, a friend, a patient advocate, and so much more. So please remember we are so much more than our health and should never be defined by it.
Just because I look okay, does not mean I feel okay!
It is easy to put on a brave face and to cover how badly I feel with makeup, for a short time. Outwardly I may look put together, but what you wouldn’t know is that it took hours to get ready because I had to take a break every few minutes. Living with an invisible illness is tricky, people can never tell I feel based on my outward appearance. So I wish people would please just ask, instead of assuming.
Please don’t compare my illness or symptoms to another person’s
Just like no two people are the same, no two cases of a chronic illness are the same. You may know three people who all have Lupus, but more likely than not they don’t have the same issues. Please don’t compare me to anyone else you know with my condition. You would never compare two Americans just because they are American, so please don’t compare the chronically ill. Also, if you know someone who died from my condition, I don’t need to know!!!
Just because I felt good yesterday does not mean I will feel good today
Many people who are not chronically ill do not understand that in order to get out of the house, we have to scrape together energy and will likely pay for it tomorrow. Please don’t assume that just because I was out for a girl’s day yesterday that I will feel like going to brunch today. Chances are that if I really pushed myself yesterday, I will be paying for it today and quite possibly for several days to come. Please don’t assume that I am being untruthful when I say I am in bed today, just because you saw me when I was out yesterday.
Many people have a hard time understanding chronic illnesses since the majority of conditions that are chronic are invisible, meaning they can’t be seen by the naked eye. That alone can cause issues in relationships because one cannot see what the other is dealing with on a daily basis. The pain or the shortness of breath can’t be seen and therefore often can’t be understood. This is why it is imperative that we, as the chronically ill, provide education to those around us. It is imperative that we explain to those closest to us what a good day for us is as well as a bad day. If we never explain why we are always cancelling plans, people may eventually start to assume it’s due to something they are doing, rather than the fact that we just don’t feel like going out. It is also important that we let others help us remember, as noted in number two above, that we are not defined by our illness. While we want others to remember this, we also need to remember this for ourselves.
In closing, we can’t expect others to understand the things discussed above if we don’t ever tell them. If we never share our health with those around us, we can never expect people to fully understand. It’s important to try to ensure happy relationships with friends, which requires communication and understanding.
About the Author
Amber writes at theworldseesnormal.com. She is a Registered Nurse by but due to her illness she is no longer able to work outside the home. Although her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.
A Chargie’s Poetic Journey Through The Great Depression
Chargie Goes Warped Rep Hana with As It Is
Trigger warning: Depression and suicidal ideation
Music Therapy Takes Form as Track by Track Album Review
On August 10, 2018 UK pop-punk band As It Is released their third full length album, The Great Depression. Expectations were high before this album’s release, seeing how it was supposed to keep the conversation about mental health going as well as bash stereotypes and the idea of romanticizing mental illness. It was supposed to be a coming of age album for today’s adolescent and young adult needs. Even with expectations of extremely relatable lyrics this album’s impact was mind blowing.
The second album, Okay, was heart touching. Even the few songs released early did not serve as adequate warning for what was to come. The Poet’s journey through grief accurately described my personal saga with only one difference. This poet suffers from chronic illness which tends to stir the mental health soup pot with anxiety disorders, depression, and even suicidal thoughts at times. Buckle up for the guaranteed bumpy ride because the road of grief has four stages: denial, anger, depression, and acceptance.
Track One: The Great Depression
Photo by Sara Rolin Unsplash
Every great tale has an exposition detailing the purpose of its plot and every great road trip starts with a meaningful starting destination. We begin with the first track in the album, The Great Depression. A song breaking the fourth wall. Narrator speaks to the listener. We, the listeners, are the consumers. The song shares the duality of being both problem and solution. However, reality is sugar coated to cover insecurities. “I’m the sickness and the cure.
We tell you what you want to hear cause we’re so insecure” exactly describes the unhealthy paradox of answering “fine” to ever question of “How are you?” Instead of acknowledging there is a problem we hide behind the curtain and pretend we are invisible. Just because you’re wearing camouflage does not mean that you are hidden. Neither are your problems. Not only are we living in “The Great Depression” but we are also living in the lies we are selling. Denial happens to be the first phase of grief which makes this the perfect first track.
Track Two: The Wounded World
The second song is all about pointing out the hypocrisy in life. Society today allows individuals to quickly blame everyone else. We make ourselves look innocent when in truth “we’re pointing the finger that’s pulling the trigger, and in case you haven’t heard, we’re all to blame for the wounded world.” It is easy to blame everyone else instead of taking ownership. Humans are conditioned to always look for a cause for every effect. Yet, we almost never think to look within our own selves.
Personally, I am always quick to blame outside pressure and outside circumstances when it comes to my mental and physical health. Overbooking a schedule and saying yes to every invitation or request can create too much stress. These kinds of wounding behaviors result in self inflicted wounds. GI issues are a common problem for Chargies yet despite this knowledge we all tend to over indulge in foods we know we shouldn’t eat sometimes. Accepting blame where blame is due offers healing. “So raise your white flags up, and let surrender eclipse the sun. We never learn.” Anyone else want to raise their hand here?
Track Three: The Fire, The Dark
Photo by Cullen Smith Unsplash
This song is all about losing relationships. Personally, platonic relationships are as difficult to lose as romantic ones but there is reason to believe this song is alluding to romantic relationships. “I start fires in the dark. Show me luck, show me fate, show me any escape. I start fires in the dark, burning bridges and hearts to the ground, cause it’s too late now.” A strong support system is essential in times of need.
Cruelly the worst of times is when many find themselves losing long lasting relationships. Watching them slip away uncontrollably sucks. I have lost quite a few people I considered friends due to chronic illness including mental health disorders. During the times that strong friendships are most needed the reality of discovering which friends are true sets in. It’s natural to question “What have I done?” or ” Why’d I tear myself away?” Self doubt reminds us we’ve made mistake after mistake. During these moments it is important to remember that we need to take care of ourselves before we care for others. It’s tough losing friends; however we must hold on to hope. And there’s always music therapy to help with loneliness.
Track Four: The Stigma (Boys Don’t Cry)
Photo by Kat J on Unsplash
“Hold on, stay strong. You got to keep it together now. Just dry your eyes, cause boys don’t cry. No, no, boys don’t cry. No, no, cause boys don’t cry.” Beginning the second phase, Anger, is the fourth track, The Stigma (Boys Don’t Cry). This song sarcastically mocks the stigma that boys are not allowed to show emotion and instead encourages them to not be afraid to show how they feel. Life is rough for everyone in different ways. Bashing a whole gender for doing what is healthy, shedding tears, getting upset, expression emotions is ridiculous. Bottling up emotions can be very dangerous. Everyone should feel free to express their pain without receiving harsh criticism for doing so.
Being a female, I have not received the phrase “boys don’t cry” directed at me; however, I have received similar criticism. Growing up with Attention Deficit Hyperactivity Disorder (ADHD) and Generalized Anxiety Disorder (GAD) I was often told I was overreacting for bursting into tears, hyperventilating, showing anger, etc. I taught myself to bottle it up. This unhealthy coping mechanism lead to several major meltdowns. Only so much negative energy can be bottled up before it explodes like Mentos in Diet Coke.
It was not until Junior Year in high school that an accurate diagnosis for chronic pain was supplied. Even after a diagnosis of Ehlers-Danlos Syndrome (EDS) accusations of over reacting were common. Phrases such as “toughen up”, “suck it up buttercup”, and “fake it till you make it” were constantly being thrown. The Stigma reminds me that it is okay to show emotion and reminds me that crying is a natural and healthy response. As long as I have hope, all will be fine.
Track Five: The Handwritten Letter
The Handwritten Letter is a swan song. It is a desperate call for help. “I need you when I’m bruised and broken. It’s all that keeps me here and hoping. I’m tangled in your mind unwoven. I need you when I’m bruised. I need you when I’m broken.” Everyone needs a support beam to lean on. Metaphorically, collapsing to the ground without it is inevitable. Not only do the lyrics of this song emphasize this fact, but the conversation in the background after the second verse does as well.
I’m constantly being reminded throughout this song of my immediate family and my best friends that form my safety net. Having someone catch us from a nosedive from great heights is critical. If you suffer with mental wellness make sure you know who the people are that will throw you a rope when you need to climb out of a hole you’ve dug for yourself. When it seems that my heart has lost all hope and glowing exit signs seem like a greeting, I rely on my support system.
The spoken conversation in the background before the pre-chorus resonated as similar words have been spoken to my close family and friends. Chronic illness and mental illness are intertwined often leading me to feeling like trapped. This song is my screams I beg my support system to hear when I am at the bottom of the hole I dug. It’s too deep and impossible to get up on my own. I need a team that is like family to bring me back to ground level.
Track Six: The Question, The Answer
This acoustic track slows things down. It brings up the question: is living and holding on really worth it? Amidst the depression feeling empty inside with no will to live on becomes the norm. We end up questioning everything that we know to be true. Questioning our support system, our reasoning, and reality all at once in a loop while desperately seeking an end to all the confusion is consuming. “Show me how it ends. Will I still be scared to live?” sounds like a sweet serenade. Severe chronic pain, depression, and anxiety have made me wonder if fighting is worth it on numerous occasions. Fear of living in agony results in wonder of what would happen if the choice to end the suffering and leave the pain behind was made. It’s good to know I am not the only one with the same thoughts as the bridge “say goodnight tired eyes, say goodnight one last time.” Falling asleep hoping to not wake up the next day, yet each morning I arise still alive. If suicidal thoughts are common, and keep pestering the mind, and becomes seen as a way out of this hell, it is important to stay strong and remind ourselves now is not the time.
Track Seven: The Reaper
I’m not sure why everyone has to give The Reaper such a bad reputation. He just offers his hand so you don’t have to cross over to the afterlife alone. This song is about the internal struggle between wanting to give in to death and wanting to stay alive and keep on fighting. I am currently living in this song as I battle with my will to keep on living and the idea of all my pain escaping and giving up. This can be seen in the opening lyrics of the chorus, “Now what I see and what I dream, they don’t align”. To be honest, I am not sure I am ready to give up living.
Life in all its unpredictable measures has been certainly interesting and most definitely challenging at times; yet, the flame in the torch of hope still flickers. Among the guilt, depression, anxiety, and physical pain there is still that hope that life is worth continuing on. That hope exists with every live show announcement and with every opportunity to photograph a live show. It exists hanging with my friends and within conversations and laughter during family dinners. For almost every reason I would want to end my life there is a counter reason for why I should continue living. “He leaves my wrists untied. Offers his hand and tells me to decide. Now I am begging him let me keep my wasted life. Please, it’s not my time” croons the lead singer. I am proud to say that at the moment that it is indeed not my time to die.
Track Eight: The Two Tongues (Screaming Salvation)
Out of all twelve tracks this song hit home the hardest. The internal struggle continues with the lyrics, “I‘m not sure he’s right, but I’m not sure he’s wrong. I’m just desperate to belong.” Everyone wants to feel like they belong. I am no exception. The familiar archetype of two voices – positive and negative, good and evil – one on each shoulder helping an individual make an important decision is being used as the sole structure of the entire song. Two distinct voices with polar opposite goals try to force a choice. In this instance, however, one voice is trying to convince one to stay alive through both the good and bad times while the other voice entices one to follow them into the afterlife where all the problems will vanish. These voices currently argue inside my head. Most days I listen to the voice of Hope. Darker days I wonder if the escape to salvation is worth it. On good days the debate happening is barely noticeable. On bad days it is a marathon. No matter the day, it is always the same banter summed up by the chorus “Her voice like a sunrise. His voice like temptation. She sings to me softly. He’s screaming salvation”. The eerie intro is also a nice bonus that has this tale sailing along smoothly about the rough sea.
Track Nine: The Truth I’ll Never Tell
It’s hard to say you are okay when in actuality you are drowning deep in doubt. Pun intended. My belief is that “The Truth I’ll Never Tell” is a sequel to a song off their debut album, Never Happy Ever After “Drowning in Deep Doubt”. Where “Drowning in Deep Doubt” talks about the truth of the matter, “The Truth I’ll Never Tell” goes into depth of why it’s hard to share the truth of why you have been distant without bringing everyone “down down down.” How do you explain how you really feel without sacrificing everyone else’s general happiness?
This song dives in to the “fake it till you make it” mantra with lyrics such as “I could tell you how I’ve really been/ But would you even want to know/ Don’t want to bring you down down down/ If I open my mouth I’m gonna bring you/ Down, down down…” The same monotone answers are always the replay when asked the polite well being inquiries. “I’m okay.” “I’m fine.” “No really, I am okay.” Saying you are okay to others while acknowledging that everything is far from alright internally is much easier than admitting to your friends and family you are not okay. In fact, it is the best way to avoid unwanted questions. This stubbornness and facade of “okay” instilled in ourselves seems like survival. Truthfully, it is the bottling up of emotions. That is just as dangerous as the thoughts causing us to be withdrawn from society.
Track Ten: The Haunting
Before listening to this song I theorized that As It Is were going to do a song similar to the style of The Misfits or Set It Off with their songs, both called “The Haunting”. I was at least hoping for some My Chemical Romance nostalgia with a Three Cheers For Romance vibe. Hence why I was totally caught off guard and in a state of shock when I heard the intro of the song “It’s Haunting It’s Haunting…” with a major Big Time Rush vibe. I immediately paused, replayed the intro, paused again, and then listened to some Big Time Rush. The similarities were too uncanny and I really felt Ben, guitarist and vocalist for As It Is, was trolling me; or at least was attacking me with nostalgia. Behind the boyband appearance this song talks about what it would be like if you actually listened to the Reaper. This chilling scenario with an upbeat bounce is met with acknowledgement that you are not okay.
Acknowledgement is the first step to acceptance as well as the first step to striving to get help. The lyrics “Can you feel your sister staring at your grave/ And if you could take it back if you could see her face.” reminds me of what it might be like if it were my brother staring at my grave. I love my brother way too much and no matter what demons are possessing my brain and even though death is offering a retreat from the pain; I could never leave my brother grieving like that. I acknowledge that it’s hard, especially when we “you die to dream, and you dream to die”; yet we can’t keep running from ourselves. Mental illness and physical illness does not go away by ignoring it.
Track Eleven: The Hurt, The Hope
This song talks about self harm and harmful coping mechanisms. While it doesn’t talk about cutting specifically, it mentions drinking and smoking which are just as harmful. Pain acceptance requires coping mechanisms and sometimes falling back to unhealthy habits such as smoking, drinking, cutting, starving, burning, or otherwise harmful behaviors is inevitable. This is shown with the lyrics “Because we all need to feel release. Because we all wanna be at peace.” I do use music and writing as healthy coping mechanisms but sometimes I fall back into old habits of punching, pinching, and scratching myself until I bruise or bleed. Music is my number one coping mechanism. I have a playlist for everything from nausea to high pain to even a mental health playlist. All are on Spotify and I’ll share a few of them here and here and here.
Track Twelve: The End
“Nobody’s listening.” We have reached the end of this track by track album review and it ends with “Nobody’s listening.” In retrospect this is the truest statement ever made in an album. Sure we say we are “listening”, but are we really listening? As the song says, “You only heard the words not the hurt/And absent of pain/They don’t mean a thing/They don’t mean a thing”. Words can only do so much, and no matter how much we scream, if our emotions and intentions of our swan songs are not being heard we will end up going mute. I haven’t reached the point yet of giving up hope, although unfortunately one million people a year commit suicide. Every one successful attempt, twenty other attempts have been made.
Suicide is an epidemic caused by the empty feeling of hopelessness. It is crucial to thoroughly listen to our peers when swan songs are being sung. We must pay attention not to the words, but where the emotion is coming from. Read in between the lines of “okays” and “I’m fines” to find what others have been begging for someone to find. “And I screamed for you until the day I gave up and lost my voice/So with crimson arms and this broken neck/ You fucking tell me who made this choice!” We have to be great listeners, yet also we hold one more responsibility. The responsibility to keep the conversation going. That’s something that I will do with every breath that I take. So I encourage you to take the first step. Listen to this album, share this review, and take a deep breath after the silence once the last track ends. Don’t stop talking about mental health. We must keep the conversation going.
About the Author
Hana Belanger is a disability advocate and activist, contributing author for The Unchargeables, slam poet and important part of the Unchargeables Twitter Team. College student and barista by day, music photographer and fan-girl by night, this nerd of all sorts balances chronic illness, a social life, and learning to be an adult. An optimistic gal who always knows where one can turn on the light even in the darkest of times is still trying to find the meaning to life. You can find her living in the moment usually at a concert or cafe with ice packs, a camera, and headphones.
Relationships are challenging when you’re chronically ill. The catch 22 is that relationships are so important to your well-being, especially when you have an illness like fibromyalgia. Some evidence suggests isolation and lack of meaningful relationships contribute to the onset and progression of the disease. As if finding quality relationships generally isn’t hard enough, feeling ill, tired and unable to engage in activities makes it hard to form new and maintain existing connections.
The Age of Digital Connection
As if we didn’t have it hard enough we are all now living in the age of digital connection. Society is stricken with the social plague of FOMO and a sad face emoji has replaced a heartfelt chat with a friend. The advent and overuse of social media has made it so easy to treat people as casual accessories to your life. With less face-to-face time there’s no foundation of investment and the comments and likes that now serve as quality time together are even more shallow with nothing behind it. This new culture is particularly hard on people who need meaningful connection the most, including the chronically ill.
Changing for the Worst
Not only is communicating digitally unfulfilling, social media has changed the way people behave. Maintaining a social media account is very often focused on yourself. Your thoughts, your pictures, your goings on. Some people have gotten stuck in this type of thinking and even if you are lucky enough to be messaging in back and forth conversation, talking on the phone or actually meeting in person, people often find any way to move the conversation back to themselves. You end up talking at each other and not with each other. Physical embodiments of your social media accounts. No one’s needs are really met.
It’s Even Harder On Us
For those of us with fibromyalgia a meaningful chat can mean the difference between a horrible day and a great day. A friend helping you out or enabling you to go out and share a fun activity together is everything. We look forward to and count on these things. Breaking plans can impact the course of our day or longer. We are also not able to spring in action for last minute plans because someone didn’t have anything else going on or waited until the last minute in case something better came up. Going out takes planning and getting ready is taxing. We may plan our days or week around it. We may be compelled to push ourselves to join a last minute invitation because we need the interaction so much, but we will probably pay for it the next day or longer.
Not Suited for these Times
Humans live in a society. We are conscious of others’ existence and must interact and work together to make society function. Human life was not designed to be lived individualistically. We need each other. We are all a happier and healthier people when we have genuine and meaningful connection. Being friends with a Chargie can require flexibility, patience and understanding. Our experiences however, it make us friends with depth, friends who can listen actively, relate to your struggles and have a blast just being able to enjoy the simple things in life. Unfortunately, social media profoundly inhibits the ability for us to connect with others in this meaningful way.
Rebecca is a free spirit, idealist and dreamer who lives resiliently with fibromyalgia. She lives for sunny days when she feels well enough to make it to the lake.
The second song is all about pointing out the hypocrisy in life. Society today allows individuals to quickly blame everyone else. We make ourselves look innocent when in truth “we’re pointing the finger that’s pulling the trigger, and in case you haven’t heard, we’re all to blame for the wounded world.” It is easy to blame everyone else instead of taking ownership. Humans are conditioned to always look for a cause for every effect. Yet, we almost never think to look within our own selves.
It was not until Junior Year in high school that an accurate diagnosis for chronic pain was supplied. Even after a diagnosis of 
Life in all its unpredictable measures has been certainly interesting and most definitely challenging at times; yet, the flame in the torch of hope still flickers. Among the guilt, depression, anxiety, and physical pain there is still that hope that life is worth continuing on. That hope exists with every live show announcement and with every opportunity to photograph a live show. It exists hanging with my friends and within conversations and laughter during family dinners. For almost every reason I would want to end my life there is a counter reason for why I should continue living. “He leaves my wrists untied. Offers his hand and tells me to decide. Now I am begging him let me keep my wasted life. Please, it’s not my time” croons the lead singer. I am proud to say that at the moment that it is indeed not my time to die.
Acknowledgement is the first step to acceptance as well as the first step to striving to get help. The lyrics “Can you feel your sister staring at your grave/ And if you could take it back if you could see her face.” reminds me of what it might be like if it were my brother staring at my grave. I love my brother way too much and no matter what demons are possessing my brain and even though death is offering a retreat from the pain; I could never leave my brother grieving like that. I acknowledge that it’s hard, especially when we “you die to dream, and you dream to die”; yet we can’t keep running from ourselves. Mental illness and physical illness does not go away by ignoring it.
This song talks about self harm and harmful coping mechanisms. While it doesn’t talk about cutting specifically, it mentions drinking and smoking which are just as harmful. Pain acceptance requires coping mechanisms and sometimes falling back to unhealthy habits such as smoking, drinking, cutting, starving, burning, or otherwise harmful behaviors is inevitable. This is shown with the lyrics “Because we all need to feel release. Because we all wanna be at peace.” I do use music and writing as healthy coping mechanisms but sometimes I fall back into old habits of punching, pinching, and scratching myself until I bruise or bleed. Music is my number one coping mechanism. I have a playlist for everything from nausea to high pain to even a mental health playlist. All are on Spotify and I’ll share a few of them 
