We have another amazing guest submission! This time, Steffenie let’s us in on her life of being a young carer at just 15, while also overcoming the challenges of her own disease! Remarkable story that we loved reading and we hope you do to!
Don’t forget you can send your own submissions about your life with an Invisible illness into us to! We love reading your inspiring stories.
~DS Editor, Jaden.
I don’t know if it’s just my life, but it seams to be that as soon as everything starts to get back on track everything comes crashing back down again
Before I tell you a little about me I’m going to tell you a little about my family.
I’m going to start with my dad (my rock). He has Myeloma, a bone marrow cancer. Last October my dad has a stem cell transplant, I don’t know much about it because I don’t want to upset my self by knowing all the details, but I do know this it’s a painful and long process. He had to have a harsh course of chemotherapy, to completely wipe out his immune system, and then the transplant. This kept him in hospital for six weeks, and as my mum and dad are very close, my mum spent as many hours of the day as she could with him. So I didn’t see my mum for more than an hour a day, because she would leave the house at 7am dropping me off at school on her way, and wouldn’t be home until at least 11 at night. This was a difficult time for me and my dad as I only went to see him in hospital twice; once on fathers day and then a week later. It wasn’t easy seeing him looking so ill, he has always been my rock and now it was looking as if this was the end of it all.
Now my mum has been in a wheelchair since I was about five, so to be truly honest I cant ever remember her being a ‘normal mum’. When I say that I have never had a ‘normal mum’ I mean that me and my mum never had or even have had the chance to do stuff that my friends do with their mums. I only noticed how different our relationship was a few years ago when one of my friends was talking about what they had been arguing with there mum about, and it was things like doing the washing and staying out late. You might be wondering why this made me notice how different our relationship was, well, let me tell you. It’s because me and my mum argue over things like how she needs to go and see her doctor or how much rest she needs. We don’t ever argue over washing or me staying out late, because little house hold tasks like washing up, cleaning and doing the vacuuming well, its just stuff I have always done!
Then there’s me, the youngest of 4, the only girl. I was diagnosed with Crohn’s Disease on November 15th 2012. Yes that is only 6 months ago, but I feel as if I have already come to face the facts, and I am very open about my disease and how it effects my life (well that’s if people want to know, lets be honest most people don’t want to her about poop, pain and blood tests now do they!) I have a passion for acting, and I refuse to let my short notice pooping stop me from following my dream! I am starting a musical theatre course in September and hope to one day become part of a holiday entertainment team.
So, my long story short, in October my dad, looking as though he had days to live, and as soon as he recovers and gets in to full remission, I get so sick that I look more like a twig than a person. By march I was a lot better and had good control over my disease, but you will never guess, that now my mums back is causing her so much pain she can hardly move! So what I want to say is that ‘Life is what happens when you are busy making other plans.’
I hope my story has inspired you to keep fighting like a lot of stories on this page have inspired me to fight on through.
My youtube channel is SteffenieJ
Steffenie, Age 15 lives with Crohn’s disease and leads the challenging life of a young carer.
Great question! In response to our most recent post, here are some fabulous resources that share advice on how to support those enduring mental health challenges:
We hope you find one or more of these helpful. Never be afraid to ask for help - sometimes the bravest choice can feel a little scary at first.
Hey guys, we have another guest submission!
This time the lovely Liz writes about her struggles with her mental health and how she is overcoming each obstacle that is before her. I really loved this submission, something different and something extraordinary!
Remember, you too can share your story!! We love getting guest submissions.
~Jaden, DS Editor.
Hi guys, I’m Liz. We take a look often at what people are dealing with medically, but sometimes we don’t realize what people might deal with, mentally, which might also be just as painful to deal with. To me, the things I deal with medically are nothing compared to the mental agony I have dealt with for the past three years.
To save the pain of explaining everything, I will only briefly touch on what I deal with… It all started back in July 2010 when my cousin got sick—we’ll say, that’s what triggered everything…, my thoughts, emotions, and memories. After he died in January 2011, my mental health took a downward spiral. My parents were unsupportive in helping me get through my cousins death. Since his health has always been an issue, they somewhat detached themselves from him. I loved my cousin to death, though. In my mind, death was honestly never a possibility for him. (We found out about two years after he died that he did not die from complications after a surgery due to his weakened state from Cerebral Palsy… but that he didn’t have CP at all—he had this very, very rare genetic disease called Allan Herndon Dudley Syndrome. It’s a rare degenerative genetic disease passing from mothers to sons that primarily only affects males. It looks just like CP in almost everything but very, very, very debilitating)
Anyway, I have always struggled with trust issues but after his death I struggled with it a lot more because I had absolutely no one to turn to. I only had myself. My mental health spiraled so much that I turned to self-harm almost daily for probably close to a year or longer, and eventually that didn’t help anymore… then I tried to take my own life, not once, twice, but three times. None of the times were serious compared to what you might think, but to me—it was a suicide attempt. I was trying to kill myself. I reached the end of my rope, with no ways to cope anymore. I was self-harming daily and crying literally every night.
I started to see a counselor by my own will, without my parent’s knowledge, mid 2011. After finding a counselor I liked, it was a slow process to make improvements. This counselor was just the person I needed. She made me feel loved and acknowledged. Her and I didn’t even always talk about what I was going through—sometimes we would just talk about “whatever…” such as, her young son, animals, school or work, things that irritate or excite us, etc. I loved her so much. With her help, we uncovered more reasons underlying why I was having a terrible time with my mental health, apart from my cousin’s death. Basically, my cousin’s death was just a “trigger” and caused everything to spiral, even though there was a lot going on beforehand… such as bullying, low self-esteem, lack of coping-mechanisms, and lack of ability to verbally express myself.
Now, after taking what that counselor said and my new counselor is teaching me now (after my old one moved), I am achieving leaps and bounds in my recovery. Mental health is something that is too silent. It makes people who struggle feel alone, unloved, and unworthy. That’s very much how I felt. But in all honesty, in the deepest of our disparity, we aren’t alone. Even if we are curled up in a ball on the floor bawling our eyes out, we aren’t alone. In those moments, we are often not thinking straight, and it takes those moments to get us out of them to help us see the light again.
I hope that each of you don’t have to struggle the way I did and still do from time to time. I hope all of you realize that you are loved, appreciated, and valued. You are WORTHY of life. You are WORTHY of living. You are WORTHY of happiness. You ARE loved.
I’ll end with this quote, from A. A. Milne (Christopher Robin, Winnie the Pooh), “You are STRONGER than you seem, BRAVER than you believe, and SMARTER than you think you are.”
Hello lovely followers.
We have another incredible submission! This time, we hear from Julie, who is living with a Chronic Migraine Disease. Her original poem talks about the hardships and feelings she goes through daily, living with this Illness. It’s truly amazing!
Don’t forget you guys can send us your submissions here! Enjoy our latest submission.
~DS Editor, Jaden
Living with Chronic Migraine Disease
Being told countless times “you look good, you don’t look that sick”
until I want to explode…
Being told “have you tried this” or “have you tried that”
until I’m ready to implode…
Being told “so and so had the same exact thing as you did”
and that “they managed far better off that you did”…
Implying you are either being lazy, lying or not trying
hard enough and I’m still trying to hold my tongue…
Being told there was a “new” article out in the paper or online today about
new information on migraines you should read and try…
Implying you are not being proactive enough in
your own treatment plan and still I try hard to hold my tongue…
Only to find out it’s an excerpt from a book I bought a few years ago,
so it’s old news-I’ve been there, done that and read it already (when it first came out originally)
so I already gave it a try…
Being told it’s all in my head, stop stressing so much or that it can’t be that bad, there’s a cure for that
just take a Tylenol, an Excedrin, Aspirin or an Advil and you’ll be fine…
All the while I know full well with all the doctors and the experts I’ve seen and all the
research I’ve done that there is no cure for migraine and I’m nearing the edge and
look out she’s ready to explode…
Being told I’m on too many medications and that is making me worse and not better
and my pointing out research shows it can take 25+ years to find the right combination, but yet I continue to hold my tongue……
Being told that I can do this or that while I’m at home all day doing nothing and not working a “real job” implying I’m sitting at home like a lady of leisure eating Bon Bon’s (whatever those are) like I’m on vacation instead of trying to stay upright with my head out of the commode…
The Barometer built into my head is my major enemy because when the pressure goes too high or too low
whether it storms or not if the pressure changes in either direction rapidly that blasted Barometer is my Foe…
Where did my mind go, I don’t know, it stopped functioning correctly some time ago, so don’t ask me to remember things (what did you say?) and sentences don’t come out coherently most times; it must mean that my head has already exploded…
All the while my head is spinning; I see double, swirls, spots, flashing lights, black holes, and the smells around me make me want to puke
my ears are ringing (no it’s not the phone) my face is partially numb and behind my eye is ready to implode…
I feel like I have three left feet, two noses, I’m clammy and I wish the person in front of me would stop swaying so
all I want to do is go lie in the dark where it’s quiet and peaceful and be left alone close to the commode
and please, oh please can you please lower your tone-a few more octaves lower or so…
They just don’t get it
They just don’t take me serious
They just refuse to listen to me
They just haven’t got a clue
They can just go to Medical School
And then they can get an MD or PH.D behind their name
And then they can tell me what I should and shouldn’t do
And then they can take time to really listen to me
And then they can show me some empathy
And then will they can really begin understand that this is more than just a headache
And then they can understand it’s serious, complicated and can be fatal if not treated properly
And only then will they know what it’s like to have a Neurological Disease called Migraine
And only then they will understand what it’s like to live with a Chronic Invisible Illness
And only then will they learn to not judge people by what they cannot see
Until then I feel emotionally abandoned and shunned by a few of my loved ones and friends who just don’t get it
Copyright ©2012 Julie
Have you ever had a dream, so untouchable that you knew it would never happen, but you still dream about it? Have you ever dreamed that one day you could hold the world in your hands, pulling the strings, letting everything you’ve ever wanted, to come true?
With a chronic illness, I have so many dreams about me conquering the world. Okay, maybe not exactly ‘conquering’ but pretty close to it. I dream of being an ambassador for an Australian organization that focuses on Heart Defects in kids and teens. I dream of travelling the world to go conferences, educating professionals about heart defects and invisible illness in teens and kids. I dream of being a writer, travelling the world and showing people the world in my eyes; through the eyes of a chronically ill teenager. I dream of one day travelling to visit sick kids in hospitals in Europe and America. So many dreams that maybe seem too big for me to possibly fit into right now. However, that’s the whole point of a dream. To grow into them.
Instead of telling people your dream, show them.
Instead of thinking about your dream, do it.
Jaden is 17 and lives with several Congenital Heart Defects. You can reach her at email@example.com.
I’m often asked if I believe ulcerative colitis has changed me for the better.
It’s a tough question. I can’t go back in time and see how my high school years would have played out otherwise. There is no me, as I am now, without ulcerative colitis.
Has ulcerative colitis changed me for the better? The simple answer is no. My disease has not changed me outside of my intestines. I am the same girl with a few extra pills. The more complicated answer is yes* – with the asterisk. It’s based on a technicality. No, UC has not changed me for the better, but living with UC has.
It starts with another girl: one named Tara. She was diagnosed with Crohn’s Disease during her second year of medical school. A few years later, Tara had chosen to pursue a career in pediatrics and found herself on the inpatient rotation at my children’s hospital in April ’08 – the month of my diagnosis and subsequent hospitalization.
You can guess how this plays out.
I was the “I’m okay” kid in the hospital. I felt so good on steroids and so relieved to have a name for my disease, my answer to most everything became standardized. Did I want a visit from the art therapist? “I’m okay, thanks.” Did I want another blanket? “I’m okay, thanks.” It was my standard answer, so if asked if I wanted to participate in a mentoring program, I would have probably answered predictably: “I’m okay, thanks.”
Tara was the mentor this “I’m okay” kid never wanted. She stayed one day after rounds to share her story. A day past diagnosis, I hadn’t yet started to think about what a future with IBD meant. Thanks to Tara, I never doubted my potential. From the get-go, I knew Tara’s story. If she could continue to pursue her passion with IBD, my possibilities were equally endless. Until I met Tara, I didn’t realize mentoring is not an emergency measure; it’s a survival skill. Her confidence inspired my confidence.
Being a good mentor is not about knowing the “right” thing to say or the “right” moment to say it. There will be moments when you don’t know what to say, and there will be moments when it’s best to stay quiet and just listen. Being a good mentor is not about the story; it’s about the storyteller. The best storytellers – and the best mentors – realize that every story matters – and every story can change another story for the better.
Until I met Tara, I never believed a single patient voice could matter. Clearly, as I’m here blogging, I do now.
Sami, 19, lives with Ulcerative Colitis. You can reach her at firstname.lastname@example.org.
This year is the beginning of a brand new adventure for me-University. Although quite overwhelming and proving to be quite stressful, it’s something I am really enjoying and am having an absolute blast. I’ve been in university for about three weeks and every week, I continue to hear this quote that, until now, I really hadn’t had any knowledge of.
And, when I first heard one of my lecturers announce this, the words rang too true, for someone especially, living with a chronic illness. Even with those without a chronic illness, without being negative, we truly never know what is going to happen, that can change our life in a tragic way, or, if we’re truly lucky, it can be the most beautiful change we go through.
It’s just the thought that, while you are busy making your own plans, ‘life’ can come through and it could change your life for the absolute best. You could be walking down the street when you find a lotto ticket and it happens to be the winning numbers. Okay, that is totally cliché, but I’m sure you can see where I’m going here. You could be on the transplant list and you’re making plans for the next few months that you’re going to be cooped up in hospital, planning visitors and treatments. 3am comes around and the nurses are getting you ready for the surgery, because a donor organ has been donated. Your mummy cries and your daddy pats you on the hand as you get pushed into theatre.
Sometimes, life has these plans and I know, that sometimes, we don’t always agree with them, but we can’t stop them. We can’t change them. But I think it’s important to look at the beautiful things life does throw our way. The spontaneity of it all. The thought that tomorrow, our lives could change and maybe, a publisher could find our writing on the Internet and want to work with us. That maybe, while we’re singing to our favourite song, unbeknownst to us, a music producer is looking for a new sound and you could be that.
I was only ever, ‘just a Heart kid’ and one day, I saw a newsletter advertising the teen camp and then, I wasn’t ‘just a heart kid’ anymore, because I was no longer alone, I had people. I’ve never really gone anywhere with my illness in ways of spreading awareness and now, I’m writing for a website (this one!) to which I’m an ambassador for.
I think what John Lennon is saying is that, sometimes, we have our whole lives planned ahead of us, but we need to make room for the unexpected, because life is spontaneous and instead of disregarding that or being scared of it, we need to embrace it.
So, just remember, that even John Lennon knows that sometimes, life gets in the way. When you’re living with a chronic illness, that comes with some extra hurdles. Hospitals when you least expect it. Doctors telling you news that maybe, sometimes you don’t want to hear. No matter what, I think it’s important to embrace whatever comes your way, because things never go exactly as planned.
Jaden is 17 and lives with several Congenital Heart Defects. You can reach her at email@example.com.
BIG news over here at Disease On My Sleeve.
Now that you know us a bit better, we want to share YOUR story:
Introducing Share Your Take! - your opportunity to share your experiences living with a chronic invisible illness or illnesses with our audience.
Whether it’s prose, poetry, photography, music, visual media, you name it! - we want to share it!
Anything I should know before I submit? Absolutely - just 3 requests!
We have another amazing guest submission! This time, by Brooke who speaks about her countless chronic conditions that she lives with and her journey that began the day she was born, and continues to be unfinished today. Such an inspiration and we hope you enjoy reading it!
Don’t forget, you can totally get your guest submissions in to us as well, if you want to see your story published, supporting other young people like yourselves!
Love to all xxx
~Jaden, DS Editor
It’s hard to imagine as a parent that your child isn’t healthy, that maybe they won’t be able to take them home straight away, or that they won’t walk, or sometimes they won’t talk, even won’t live a full life. It’s hard to expect them to understand that their son or daughter aren’t as healthy as they should be. I mean, could you blame them?
When I was born, I was sick. Underweight, low blood sugars and even though we didn’t know it yet my bones were unusual. By the time I started crawling we new that something else was going on. I couldn’t crawl normally, my left arm was facing backwards. Physio, lots of physio. Occupational Therapy. Appointments. By 3 weeks old, I was a regular patient in the hospital.
Before we go any further, I think I should tell you what chronic conditions I suffer from. Here’s the list:
Fibromyalgia, Rheumatoid Osteo Inflammatory Arthritis, Bone and Cartilage Dysplasia, Asthma, ENT problems, Chronic Fatigue Syndrome, Chronic Pain Syndrome, Osteoporosis, Severe Reflux, Radiululna Synostosis, Migraines, Major Depressive Disorder, General Anxiety Disorder, Borderline Personality Disorder, EDNOS, ?Lupus, Supraventricular Tachycardia, ?Mitral Valve Prolapse, Alopecia, Anemia, Severe Allergies, Prone to Pluracy.
By the time I was 12; I had had 14 operations. I am now 20 and I have had 24 operations, and I am expecting more. I have had too many admissions into hospital, over 200 x-ray’s, over 50 ultrasounds, 6 MRI’s, 7 Bone Scans, 1 bone Densitomotry, 3 CT’s - the list goes on.
When I was 16 my body broke down, I couldn’t walk, couldn’t feed myself, or dress myself, brush my teeth, brush my hair, wash myself. I collapsed as I tried to stand. It was by far one of the worst experiences of my life. I depended on nurses and my mum to help me. What’s worse than losing your ability to walk? Losing your independence. This happened a couple of times. The worst was when I was 18, I was in a wheelchair for 8-10 months.
Without Livewire, and the support group I have found through the hospitals I have been in; I wouldn’t be where I am today. They have changed my life in so many ways, and I love it.
I wouldn’t change having chronic illness’ for anything, it’s made me stronger, and a better person. It’s made me who I am today, so thank you body, thank you to the people I have met, thank you to my doctors, thank you to my family and everyone else who has supported me through this unexpected, unfinished journey.
I spend a lot of time with medical people and doing medical things; it has become unavoidable. Early on in my illness, I would freak out if I had two doctor’s appointments in one week, or an appointment and a test, or anything more than one medical thing per week. At first, I was so nervous and anxious and got all worked up before everything, wondering what they would say or do or what tests they may order. It took me at least 8 months or so before I finally stopped getting nervous and such, and just accepted everything as a new part of my life and my routines. Sometimes though I still get nervous or anxious, but I’ve figured out stuff to do before a big appointment or test or surgery that keeps me calm.
Some people are naturally cool around new people or medical people, while others are quite the opposite. I’ve found developing a routine, or taking a certain item, or listening to a certain song can help you stay calm and get through things that scare you, or may be unpleasant, or make you nervous. I have found my own things that make medical stuff easier to get through; it just took a while to figure it all out. Also, during times after a stressful medical thing or a new diagnosis and such, I turn to certain things to keep me calm and get me through processing it all without stressing out too much or taking anger out on my family.
Before an appointment or test, I like to listen to a certain playlist on my iPod. I like to sing along and just really get into the music; it also helps me after I go through a stressful thing. Reading is also one of my favorites. Some people prefer art to express their feelings or relieve stress. Reading can be a great escape, and books on tape are also good if you like to multitask or the act of reading isn’t quite your thing. Writing, playing an instrument, doing a craft, playing a game, any number of things can help us relieve stress or just help pass time when we need to. Everyone has their own thing they do that works for them.
Getting nervous or upset or frustrated or anything is totally normal, having something that helps you keep your cool can help in a lot of ways. When you’re less stressed or upset, you can think clearer and remember things and communicate better which can help a lot of things. Sometimes I get frustrated in the middle of an appointment or whatever and I just have to look forward to what I do when it’s over that gets me through.
Some appointments, tests, procedures, etc, outright suck. When I have these type of things, I set a reward for myself when I get through it. I may do one of the things I said above to get my frustration out or calm down but then I may reward myself with an extra scoop of ice cream, a new album I want on iTunes, a pair of shoes, a massage, whatever it is that I want that will help me push through it and get it done. Sometimes that’s all I do it for, what I get in the end, because I’m just frustrated with doing stuff without getting rewarded. We don’t need those kinds of rewards for everything but for the tougher, more painful and unpleasant things, it definitely can help.
Something one of my friends often reminds me of is that it is okay to get upset. I’m the type to hold it together and be strong for everyone for as long as I can, but recently a friend of mine helped me remember I have the right to be upset. Things can be awful, and we do not have to hold it all together all the time. We are the ones going through this and fighting every day, so yes we can cry and scream and be upset when things go bad or something happens. To me it feels a lot better to cry and get upset about things closer to when they happen, rather than waiting and then all the bad feelings pent up inside explode all together at once.
This has been somewhat of a rambling post, but bottom line is it can be helpful to have a few things set up to take with you in case of stress or frustration at an appointment, procedure, surgery, admission, anything it may be. And also that it is okay to let your feelings out and you don’t have to hold them in all the time. It’s okay to cry and get upset when things happen and just let it get to you for a bit - ‘cuz to me it’s a lot better than randomly exploding at everyone.
Hannah, 16, is diagnosed with Mitochondrial Disease, Ehlers Danlos Syndrome, Gastroparesis, severe intestinal dysmotility, and POTS. You can reach her at firstname.lastname@example.org.