All that negative stuff isn’t healthy. You just need to move on. You just need to think positively. You need to stop perceiving that darkness. Maybe you should pray to god. I don’t know why it’s like that, but there are people worse off. You’re not the only person like this, you know. I don’t know why you’re being so dramatic. I’m sorry I can’t handle all your sadness anymore. At least it isn’t cancer. You can still walk though. Why do you always talk about this? Why can’t you just talk about happier stuff? You should get out more. You should exercise more. Buck up, it’s not that bad. You just need to pull yourself up by your boostraps. You’re fine. Stop worrying. Maybe you need a vacation. When are you going to just let it go?
But they mean well, you should just appreciate their positive thoughts. You just need to thank them for their prayers and good vibes. They were being nice. You’re just making a big deal out of nothing. You’re so ungrateful.
Your intention is irrelevant, if not selfish. You’ve exploited the sick with your brand of “empathy”. It’s fake. You may tuck yourself in carefully to get a good night’s sleep, but this culture is a gimmick. It’s a cop-out.
Seriously, your silence would be better appreciated. Didn’t your mother ever say if you don’t have something nice to say, you shouldn’t speak at all? Your positivity porn is tired, it’s old, and I’m over it. You’re trying to minimize, marginalize, dismiss, invalidate – move on because that will not be accepted.
My dearest chronically ill friends – that is what you need to say if anyone should ever utter a word of their positivity or inspiration porn. Don’t get me wrong, a healthy dose of positivity is important for experiencing the spectrum of human emotions. Happiness cannot exist without sadness. Grief does not overwhelm without ecstasy. Calm doesn’t breathe without anger swelling on the other side. We are a culmination of these experiences. Each emotion, each experience, each feeling and attitude has a place and should be weighed when we consider the human condition.
And please don’t mistake this as me saying that pain equals strength because that is not the case. There people who have moments of strength and weakness, with and without pain and illness.
But this culture of positivity needs to stop.
It is preventing legitimate strides toward a more equal foundation for the chronically ill and in pain and disabled. People are prescribing happiness in the place of medicine. Medicine that is supported empirically and scientifically. It’s intended as a placebo. A dose of sugar on our shitty lives. But we can stop it. We are sick and we are in pain, but we have a voice. Our voice matters. We are relevant. We are human beings and our health isn’t inconsequential. We are not collateral damage to a misguided drug war, or political mismanagement. We are in pain and we are exhausted. But we have the right not to be, as much as able.
Talk about it. Do not accept positivity and inspiration porn. Positivity isn’t a cure for genetic disorders. It can’t fix a congenital brain condition. Call your friends, family and doctors out on it. Correct them. Set those boundaries. And never accept less. This is critical. Do not sacrifice your mental, emotional and intellectual safety for that. Intention is irrelevant in this context. Your well-being is not.
Thank you to the author of this blog for submitting her story. You can find Shiloh at http://salvationisadhoc.wordpress.com
Shiloh is a college student and zebra with EDS-HT. She believes that the power of words can connect humans in an intimate and meaningful way, and that’s what her aim is to do with her writing.
If you have a post that you’d like to see feature on Illness Army, check out our Submission Guidelines Page.
This is a must read.
I apologise for my recent absence.
Illness Army is incredibly popular, and I have only made time to go through each of your emails and publish your stories instead of my own.
Ihave also had a lot going on in regards to my health, a few rough flareups and became lost in my dark thoughts, symptoms and busy agenda.
Even though I have been absent on WordPress, I have not been so absent on Social Media.
I have received an influx of personal messages lately reading the following:
“You are looking great lately. You must be feeling better,”
“I have seen that you have been getting out more lately. You must feel fine!”
Photos begin circling of my face painted with a little bit of makeup, hair straightened, sitting in a public place and suddenly everyone remembers that I am still alive, and I am deemed as cured/better.
Firstly, I am not cured.
I don’t know how to respond to the “feeling better” statement.
I don’t know why society assumes that someone that appears to look healthy, is healthy.
If anything, I am adjusting better to my new norm.
Secondly, yes I might be out – I can assure you it was for an hour, no more.
Do you know how much strength and additional effort it takes a Chronically Ill sufferer to get up and leave the house for ‘events’?
I don’t know about you, but I personally have to be dragged out kicking and screaming. Every inch of my body aches, I am trying to hold in my wanting to vomit and the last thing I want to do is be in public being stared at because ‘the normal looking girl is walking too slow’.
I don’t know how to feel when I receive these personal messages.
Do I take it as a compliment, with pride?
Or do I take it as an insult? As people come to me after seeing a photo or a post, telling me that I look great, and then 101 question me as to why I am still not at work, why I am still in appointments, why I am still unable to drive and why I missed our lunch date.
I am continuously spoken to like they think that at the snap of my fingers I can just turn on the Health Button. It is strongly ringing in my head as an insult.
It’s always one extreme or the other.
I am either deemed well enough to run a marathon, or I must sit in my house alone all day because the symptoms are making me miserable.
There is never an inbetween.
People don’t understand that we can feel strong enough to go out some days, but still come home sick/still be sick>
Are people naive enough to think that I’m going to happily post a photo of myself when I have acne all over my face, I’ve been vomiting my organs out and I am so pale that I could be mistaken for Casper the Ghost?
Ah no, and I am certainly not going to post a Facebook status about how I contemplated killing myself four times this week, either.
I, like you, choose to only publicise my achievements; the days that are slightly more bearable than others, and the photos that make me look half-decent. Why? Because I’m human.
Forgive me if I, too, want one day where I look ‘normal’, ‘beautiful’, ‘unpained’.
Well, maybe this is the problem?
Maybe sufferers of Chronic Illness are feeling pressured to be something we are not; healthy.
Maybe this is what needs to change; I/we need to make our statements raw, and our photos as honest and natural as they can be, in order for everyone to stop and take notice of the bigger picture.
So, I have taken a ‘selfie’ every day for the past thirty days, to show you that appearances are not everything.
I am not “pretty” every day and I don’t even care.
But, mostly, I want you to see the fluctuation.
I want you to see the face behind the “makeup days”.
I want to share that there are MANY faces of Chronic Illness that aren’t often publicised.
I don’t get to pick and choose what days I am ill and unable to leave my house. I don’t get to pick and choose which events I have to cancel, or when my flareups decide to make place or for how long they last. You cannot make a solid judgement from the photos; you can only make ASSUMPTIONS.
And queue the non-sick raising their hands, asking, “but you were able to go out some days so why can’t you just push yourself to go out EVERY day?”
Some symptom days are just HARSHER than others.
The point is, I did not wake up CURED.
I felt sick the entire time, but some on some of the days the symptoms were just easier to manage than the others.
I have days where I walk down the street and you would not think that I was suffering with severe pain or nausea twenty-four hours a day… and then there are days where I look pale and pained; there are days when I run to the toilet, I can’t speak due to nausea and I’m curled up in a ball on the floor crying.
I want you to know that it is OKAY to have days where you don’t wear makeup, don’t feel like going out to see a friend, your hair looks frizzy, your skin looks like a dot-to-dot puzzle. It’s also okay to get a day where you feel well enough to get dressed up and do things, and to still come home at the end of the night being sick. It’s OKAY.
Take a look at my photos, and before you jump to drastic conclusions, assuming that I have magically overcome my illness overnight – let me tell you that I haven’t.
I’ll let you in on a little secret;
I was sick every single day in each of these photos…
But, you wouldn’t know it by looking at me.
Here is a thoughtful, honest piece from my friend Rhosyn.
She runs the blog https://rhosynmd.wordpress.com and is happy to chat to any sufferers who are seeking support. Rhosynhas been ill for four years now and has gained many coping mechanisms along the way, that she is happy to share with you.
Please give her a follow.
If you would like to see your post published, check out our Submissions Guidelines Page.
A few months ago I was laying in bed after another fruitless doctors appointment and I was thinking of all the things I wish I knew at the start of my illness, so I decided to write them down in the hope that they might help someone else. So, without further ado, here are my top tips for the recently diagnosed chronic illness warrior.
1.) Don’t dive into anything right away.
Make sure you give yourself time and space to consider which path is right for you, because there will be many, and you can’t do them all at once. I know all you want is to get better as fast as possible, but if you dive straight in without considering the consequences you could end up doing more harm than good.
2.) Let yourself grieve for your old life.
As hard as this is to hear, your life is never going to be the same again. It’s a devastating loss, especially if you’re young, and it’s incredible hard to accept that you can’t do all the things you want. I don’t think it’s possible to get over it completely, of course you’re still going to have days when all you feel are anger and sadness, but you need to let out those feelings instead of holding onto them or pushing them down. If you refuse to deal with how you feel, it’ll only get worse and end up impacting your physical health as well.
3.) Get a therapist.
I know a lot of people are reluctant to do this, and some see as a sign of weakness (mainly due to the connotations between therapy and mental illness and the stigma that that comes with), but that’s a load of crap. There’s no shame in admitting you’re having trouble dealing with everything, because who gets a chronic illness, has their life turned upside down, and is perfectly fine? Nobody.
I know therapy can be expensive, but many therapists have negotiable fees for people who are on lower income, so don’t worry about asking about that. Personally I think it’s worth every penny. I don’t think I could cope if I didn’t have someone to talk to about everything I’m feeling and help me make sense of it, it makes me feel a whole lot less crazy haha.
4.) Become your own doctor.
Our global healthcare system has a very poor understanding of chronic illness as a whole. My main illness (myalgic encephalomyelitis) doesn’t even have a diagnostic test for goodness sake!
GP’s will vary between “incredible understanding but useless” to “disbelief that you actually are ill”. I am very lucky that I have a very understanding GP, but there’s really not much she can do, so you, the patient, have to take over.
I go nearly every month armed with a list of questions, and whenever you get put on a new medication, double and triple check for any interactions with the tablets you’re already taking. It may sound obsessive, but it is necessary. You’d be surprised how often these things are missed.
5.) There will be people who don’t understand and make hurtful comments.
This was probably the hardest one to learn. I’ve always been incredible open about my illnesses, how they affect me, and how I struggle day to day. I thought by doing this I could side step the stigma and ignorance that comes with the territory of having chronic and/or mental illnesses. Oh how wrong I was… If I had a pound for every time I’d heard; “Come on, you’re just not trying hard enough”, “everyone gets tired sometimes”, or “oh I know how you feel, I feel so hungover today” (I could go on)…I’d have enough money to find myself a cure!
There’s no way to get around the fact that some people just don’t get it, and never will. The easiest thing to do is to just cut them out of your life. I know this may seem drastic, but honestly it’s so much easier in the long run. You need every scrap of energy you can, you don’t have enough to waste it on trying to get people to understand.
6.) Get used to asking for help.
Realising you can’t do things that you used to be able to because you’re ill is so hard, in fact there aren’t words describe how crushing it is. The realisation that at 22 I’m just as dependent on my parents as I was when I was a child is utterly disempowering. Not being able to walk to the corner shop, or even to walk to the kitchen to get myself breakfast… Well…there is no way to get used to it, but the sooner you swallow your pride and ask for help, the sooner you’ll get better because you won’t be pushing yourself to do things that are beyond you at that moment.
7.) Your body is going to change.
This is an important one. At the beginning of my illness I got put on a medication that caused me to gain a lot of weight. It happened so fast that I would look in the mirror and not recognise the person who I saw. It made me very depressed, and it’s something that I still struggle with now sometimes.
Everyone will experience different changes, whether it’s gaining weight, losing hair, or having bad skin. As so far as is possible try not to let it affect how you are as person, because whatever it is that changes your body, it won’t change how kind you are, how generous you or how much you love your friends and family. Those are things that matter and the things that people remember, hold on to them.
8.) Get on social media.
Being chronically ill is incredible isolating. Your energy is extremely limited, and it has to go towards the necessary tasks such as work (if you’re well enough), cooking, and many (many) doctors appointments. You will also probably find that the number of people you call friends, will decrease significantly. They do say hard times reveal true friends, and that has never been more true than with chronic illness. Initially of course, this is incredible painful, but it does get easier, I can vouch for that.
I’m sure many of you are already on social media, I certainly was when I first became ill. However I had no idea of the amazing community (the “spoonie community”) of chronic illness sufferers that exists online. Whether it’s Facebook groups, Twitter, Instagram, and (obviously) blogs. Whatever you are going through or suffering from I can guarantee that you can find someone going through something similar. The amount of support the online community offers is incredible.
9.) Some days you will feel like you can’t go on, but you can!
This is where I find Mindfullness really helpful. Day to day, I don’t think about the future, I don’t even think about next week, or tomorrow. If I did I would just collapse into an existential crisis. I just think about today, this hour, this minute. There’s no point in thinking about anything else because I don’t know how I’m going to feel tomorrow or the next day.
I’m not going sugar-coat it and say that having a chronic illness is easy, because I’d be lying, it’s not. There are days when it all feels like too much and there’s no point in anything anymore, but please know that everyone has days like that. It’s completely normal to feel depressed sometimes. All you have to do is put one foot in front of the other. The human spirit is uniquely indomitable, you can survive this!
I hope you like what I’ve written, do please go check out my main blog if you do, and please let me know if there’s anything you think I should add to this list.
Until next time, Rhosyn
Another must read from the ever-so-sweet Joshua.
I am lucky to call Josh a friend.
He runs the blog http://musicismystory.wordpress.com and is an incredibly talented lyricist.
Joshua spreads hope for other sufferers of Cerebral Palsy, Depression, Anxiety and Body Image.
His story shared today, will leave you with a warmth in your heart and an overwhelming feeling of hope for love.
So, it’s been two months since I’ve written anything – not a song, poem, or blog post of any merit or substance. Why’s that important? Well, let’s just say that I’m not doing what I should be: myself.
I mean that in an expressive and artistic way, and the reason why is because I’m happy – I’m in love. My creative nature is birthed from heartache, pain, loss, fear. I don’t have those feelings now, and I have a girl in my life that accepts me for who I am.
She is of course in a different country – Norway to be exact. Sure, I know what you’re thinking: it’s limiting, too far, or not possible. We’ve talked about it countless times, and we both come to the same conclusion each time: we both give each other something that no one else ever has. Despite being 3,587 miles(5,772 kilometers) away from her, I’ve never felt closer to anyone emotionally and mentally in my life.
Is there someone here for me in New York? Sure – somewhere – but that’s not the point. Over the years, I’ve consistently fallen for girls that I’d never have a chance with if my life depended on it. ‘Just kill me now.’ I’d say.’ This ain’t gonna happen.’
I always wanted what I couldn’t have – including a “normal” body due to my disabilty – and the odds have always been against me since birth. However, my biggest struggle became the catalyst for how I’ve accomplished anything in my life. I can do anything you can – I just do it differently – I’ve obtained everything in the opposite fashion and I applied that to relationships, too.
And why not? Why shouldn’t it be different? I’m never gonna have a regular life – and that’s okay. Conventionality can bite me. And the thing is, this girl that I love is different. She’s human, she’s reflective on what she’s done – what she sees – and she acknowledges that – to me anyway and I her. That’s what’s important. We acknowledge one another.
Those other girls who I’d never be with in a million years liked me for one of two reasons: I knew what to say in the face of their adversity, and they had boyfriends they didn’t like. A lot of people are superficial, apathetic, and worrisome of their image if they’re with certain people. I’m that certain person to others when it comes to relationships.
I couldn’t give less of a shit now if I’m not enough for you. I’ve “tried” the online dating thing and it’s the same bullshit. Everyone’s afraid of saying what they want, and when someone is honest in what they want, the system designed to “find your perfect match” – based on nonsense – gives you a big fat middle finger.
Online dating prays on the fears of lonely people who’ve been rejected by society only to reject the want they desperately need: love. You can’t live without it. It’ll kill you before you give it a chance at times. I’ve been dead up until I found this beautiful girl named Anette. The love she’s given me and the love I have for her have saved me from eternal somberness and stifling heartbreak.
She’s proved to me that I’m loveable, I’m “good enough” – even though she’d say great – and most importantly that I’m capable of everything I’m afraid of. I’m so grateful for her and she’ll be visiting me in June. It’ll be the first time that we’ll be at fingertips length.
I can’t wait to meet you, Anette. Thank you for making me see the beauty that is life and for showing me what love’s about: empowerment and encouragement of one another through light and dark times.
I love you.
If you would like to submit your story of hope during illness, check out our Submissions Guidelines Page. I look forward to hearing from you.
Chronic Pain was something I had never heard of, knew nothing about or even knew anyone who had it. But after failed Spinal surgery nearly 5 years ago, Chronic Pain seems to be my new best friend. We are now never apart.
I was told I had Degenerative Disc Disease in my lower spine, the area I was operated on, 4 years ago now, and I have learned to live with it, it’s not as bad as it sounds. The word disease freaks you out at first, and so does google, but eventually we all get this, but usually when your older. So it’s not as bad as it first sounds!
Less than a year ago now, I was also diagnosed with Lumbar Spinal Stenosis, Facet Joint Hypertrophy, Enlarged Facet Joints, and Arthritis in the Facet Joints. To go along with these, I have Bursitis in both hips.
Every day is a new day, a new learning curve, it’s a hard challenge. What I did yesterday, I more than likely won’t be able to do tomorrow. And that sucks. Being more than capable of walking 5 years ago, to now not knowing if my legs will support me to take 1 single step, it’s hard, so very hard. I am a determined/ stubborn person and will not ask for help, but what are you supposed to do when you are on the floor in a heap and can’t get up, all because your back has failed you and your legs, and all without warning.
Every day, every minute and second of each day I have a dull throbbing and aching pain, gnawing away at me. Some days it takes over your mind and you cannot function. Then add in sharp stabbing shooting pain, from your back down both legs. Then add a numb left leg (the whole leg). Then add a grinding sensation every time you take a step. Now imagine ALL that on 2-3 hours’ sleep a night.
The one thing I always remember is the look of utter disbelief when you tell a family member or friend what has happened that day, or at an appointment, it’s the look of “I don’t believe a word you say – It can’t be that bad, it’s all in your head”. I never asked to have all these issues, but they are real. Just for ONE person to believe you, would mean the world.
Unfortunately this is now my life. This is what I now have to deal with for the rest of my life. I cannot escape. Being told that they have no more options for me, is not what I thought I would hear so soon. No more treatment, nothing. This is it.
But trust me, there will still be the dark days, many days, when you don’t want to move or even talk. When you want to stay in bed forever and hide away. But what you will learn is a completely new outlook on life. You will find strength and determination you never knew possible. You will manage to cope with things, in your very own way, and that’s ok, just never stop fighting. Never stop. Never give up.
If I can help one person see that their life is not over (even though most days you do feel that way!), if I can help that person believe that they CAN fight, if that one person becomes a stronger individual, then that’s all I need. I need to let people know they are not alone, there are other people in this world, dealing with the same thing. Don’t shut off, reach out – you never know who may be there to help.
The author of this post, Kat, can be found at her blog http://katwilson04.wordpress.com
Kat has been living with Chronic Pain and back issues for 5 years. In the hope that she can help someone else out there with the same issues, she started her blog, to make sure that person knows they are not alone, that there is someone else out there going through the same thing.
If you have a similar Illness story that you would like to share, please have a read of our Submissions Guidelines Page!
Been a few days since my last post, as really didn’t feel up to it. So today im going to try to explain in MY words, how ADHESIONS affect my everyday life. One thing I will say, is that ADHESIONS can effect people differently due to severity, where they are located, and the density to name a few.
Personally, I had no idea the consistency and location of my ADHESIONS until the surgeon noted them in his post operation report. Consequently this had informed me that I have ones which are thick and dense covering pretty much my whole abdomen and chest. As ive said in a previous post, this includes my bowels, pelvis, and some sticking organs to other parts of the body.
How do these sticky, webbed, and incredibly versatile overgrowth impact the host? Sometimes they don’t, and the person may never have an issue (or at least know its ADHESIONS causing them issues). Then there are many like me, who went years with no major pains and complications, then out of the blue things take a sharp demise, leaving you confused to what the hell is happening. Some have issues almost immediately after surgery/inflammation/trauma.
There are many aliments which get attributed to ADHESIONS including –
Digestion problems (Ranging from slowed digestion, narrowing of bowels, loops in the bowel, Gastroparesis, and much more).
Organ functionality issues (especially when an organ is being pulled away from its natural position or being encased in ADHESIONS).
Pain (ADHESIONS have their own blood supply & nerve endings, so when they are tugged or pulled on via movement etc. It can cause intense pain). This is a limited example, and is much more complex, though I shall go into this in more depth another time.
Nervous system implications.
This is not an extensive list, just an overview.
Getting back to the title of this post, I should really explain how ARD affects me, what I do & use to try to keep the conditions implications minimal as possible.
Bowels sticking together so tightly, that it’s as if 2 pythons are trying to suffocate each other is how it feels daily. Also parts of the bowel looping back on itself = digestion bloody kills. When it first started, I was advised by my doctor to up my fibre intake to help build up my roughage helping to keep things moving. NO NO NO, it absolutely brought me to my knees crying in pain, the extra bulky stool was now ripping through my constricted system.
So now it is at the stage where I can no longer eat normal. No meat unless its white meat like Turkey, Chicken or fish. No veg except when super soft in soups (only certain veg), and many more restrictions. I was referred to a dietician and now have up to 3 Ensure (nutritional shakes) if I am unable to eat any solids. Unfortunately due to the digestive issues it means I can have severe constipation, which backs up the system causing even more pain (and at times partial bowel blocks). Constipation can also reverse and then its the complete opposite. It literally feels like having serious gastric flu when this happens. On those days even drinking water to keep hydrated is a challenge. Those days its bed rest (not to conserve energy as there is none to conserve lol).
Lol enough of blighting you with my intricate bowel issues.
Daily chronic pain erodes the mind after a while, ever heard of brain fog? Well this causes pain fog! One of the reasons this post has taken days to be written is precisely attributed to pain fog. You start with the plan in your head, then everything gets jumbled up due to pain receptors interfering with the neurons trying to fire up to get this wrote 🙂
With the pain can come anxiety mixed with Depression, as you wonder whether the pain will ever diminish enough to allow you to live in somewhat a “normal” way. I have and still do suffer with Anxiety, Depression, & mood changes directly influenced by Chronic Pain, fatigue, & PTSD (from my accident and surgery). This along with the pain means sleep is very hard to come by, with insomnia at times becoming a regular occurrence.
The pain is not limited to one certain area for me. It can range from all over the pelvic area up to my belly button, to all over abdomen, to chest, & at times all over these areas. Everyday is different, the bowel pain is pretty much all the time, though other afflicted areas varies daily (don’t know why, so wont even try to explain it).
ARD is kicking my butt again, so will leave this here as just an overview of my daily struggle.
When I can, I shall go into which meds I’m currently on, have tried or have heard of in relation to others with ARD, the current therapies offered (and some which are not!). A more detailed blog in regards to the Depression etc. will be posted.
Apologies for not covering everything I wanted too in this post, though hope it helps put over some of the tribulations ARD warriors live with.
Till next time, keep your heads up WARRIORS, and carry on fighting the battle.
You can find the author of this post at http://ardwarrior.wordpress.com/
Darren is an Adhesion Warrior trying his best to raise awareness of Adhesions/A.R.D to as many people as possible. It’s rarely recognised even though 93% of people who have abdominal surgery will develop adhesions.
If you have an illness post that you would like to share with the community, please take a look at our Submissions Guidelines Page!
I’ve always loved watching waves barrelling into the shore, crashing onto the rocks, fizzing into nothingness, and then being sucked back out to sea. I’ve never loved the fact that living my life feels akin to being one of the tiny grains of sand on an ocean beach, being relentlessly pummelled by wave after wave.
Despite being human, I often feel as powerless as a grain of sand. Unable to move, to protest, to stand up to my aggressor. It’s impossible to get a grip on a wave – if you reach out to catch it, the water simply slips through your fingers; or worse it can rip you off your feet and drag you out into the wide ocean.
Unlike watching waves crash, I can’t simply walk away from my life when I get tired of the spectacle. The only thing I can stand up and say I steadfastly believe is that I want to be alive. I want to live.
Unfortunately, I’ve spent a great deal of time in my life not living, but simply surviving. But I keep going. I pushed through two horrid years of chronic headache which responded not to medication, nor massage, nor meditation, nor dry-needling, nor cortisone treatment in hospital…
Chronic pain was accompanied by depression, a sense of complete and utter hopelessness, severe anxiety, and anorexia. And somewhere along the way, the line between mental and physical illness blurred and the relationship became such that depression was causing the chronic pain to continue, despite the chronic pain having caused the depression to begin with.
Anorexia was a way of coping with hopelessness. I adopted a fatalistic stance on life – there was no point hoping, it wasn’t worth looking after myself, I wasn’t worthy of food or enjoyment or life. I focused solely on food – calorie calculations, thinking up ways to avoid food, inventing recipes, researching food ingredients and nutritional information, creating more and more rules. So I wound up in hospital. For eight weeks. I fought off anorexia, like a crab with its pincers in the air, snapping at the thoughts and beliefs that had caused me to waste away and starve myself.
Life jerked up and down after that, until finally, remarkably, the headache began to gradually fade. I felt fully alive for the first time in two years. I was having cranio-sacral therapy, doing volunteer work, yoga, and French lessons, writing, gardening, cooking – living what felt like a full and satisfying life.
But as a 17-year-old, this couldn’t continue. I had to go back to school. So I did VCE. I did brilliantly – got a fantastically high ATAR, two perfect scores, got into the University of Melbourne, contributed to school life. I appeared, for all intents and purposes, to be a successful, satisfied student. But scratch just below that veneer and you would have seen reality. Throughout year twelve, I felt like I was simply holding on to fragments of my life in the hope that once the barrage of exams, revision, SACs and homework was over, I’d be able to put them back together.
I withstood 21 migraines, sustained by the belief that things would get better once the year was over. 21 times last year my vision blurred uncontrollably. 21 times last year I was forced to my bed. 21 times last year I endured agonising pain, waves of nausea and often unmanageable urges to hurt myself or to kill myself.
Along with the migraines came intense anxiety, suicidal thoughts, self-harm, and bouts of anorexic thoughts and urges.
Again, sustained by the hope that 2016 would spell release from all this suffering, I would gather myself up out of the hole each migraine pushed me into, and got on with the task at hand – school.
I not only studied but blogged, did lots of advocacy and fundraising for mental illness, continued my role as a speaker with beyondblue, I participated in school choir, made it to the state finals of Lions Youth of the Year, made many public speeches, did yoga, and generally appeared to have my shit together.
But after over a year of pretending, hoping and pushing myself, I feel like I’ve run aground. 2016 has been the opposite of release. My illness has continued pounding me, with wave after wave of migraines and headaches. I’m on ‘holidays’, but I don’t feel like I’ve had a holiday at all – the waves simply haven’t let up.
I’ve missed social engagement after social engagement, I’ve spent hours upon hours at medical appointments, I’ve hit myself in the head time after time, and I’ve shed countless tears.
Outwardly, I’ve accomplished much. I’ve continued yoga, started volunteering at a Vinnies soup van, got myself sorted ready for the start of my bachelor of arts next week, I’ve delivered speeches as a speaker for beyondblue, I’ve written heaps, I’ve cooked, I’ve spent time with friends and family.
I’ve done everything right. I’m about to start studying at a prestigious university. My friends and family love me.Medically, I have a clean bill of health. Every appointment brings the same conclusion: there’s nothing wrong with you, you’re doing super well, you’ll have to manage it as best you can, we’ll try this but it’s not a magic fix-all.
But I feel horrible. I can’t live in the cycle I’m stuck with – migraine, self-harm, loss of hope, grief, claw my way back, hope, motivation… migraine. This cycle is also punctuated by debilitating headaches, and pervasive anxiety about my health which follows me everywhere I go.
All I want is to be a normal 19-year-old, but I don’t feel like a whole person. I exist only in the spaces between migraines. Each migraine takes away a little more space, a little more of me. It saps more energy, deepens my mental illness, distances me from my family and friends, makes me feel less alive.
Despite this, I continue the battle. I am deeply, irrefutably committed to life.
I really encourage you to follow the author of this post, Emma at https://lovehopepeaceinitiative.wordpress.com/
Emma’s blog is about her quest to live a healthy, happy life.
She is only 19 and throughout her teenage years she has suffered from Physical (Chronic Headache and Migraine) and Mental (Depression, Anxiety, Anorexia Nervosa) Health issues. Her blog is a combination of personal reflections, book reviews, poetry and wellness tips; inspired her own experience, nature, philosophy, people, language, yoga, books and love for music.
If you have a story similar to this that you’d like published, please check out our Submissions Guidelines Page for me details on how!
I consider myself fortunate, blessed rather to have received an early diagnosis. At least I knew what was causing my symptoms. I’m sure I have issues that aren’t linked to my having bipolar disorder (BD) and it’s important to know the difference but that’s for another conversation.
There are people suffering with symptoms of mental illness who either don’t recognize them for what they are or have an inkling that it might be mental illness but remain in denial, not yet ready to face the likely stigma. Somewhat regrettably, I can’t readily identify with any of the above categories of persons. However, I think we all (including those without a mental illness) could benefit from mental illness prevention programs and anti-stigma interventions beginning at even the early childhood education level. Certainly there is much that could be done for prepubescence adolescents as it appears that mental illness often first manifests in the transition period between adolescence and young adulthood.
Although I am told I wasn’t an “easy” child and continue 30 years later to have recurrent sleeping issues, I first experienced- what I was told at the time “could be” BD- when I was 18. My family and I wouldn’t fully embrace the idea until about 5 years later, mainly because we didn’t have to. Following that first “episode” and after having seen a psychiatrist and taken a course of medication I left home to attend college abroad. I had recovered.
Now it would be remiss of me to not mention that the tragic death of a dear friend and primarily my having been a witness to his fatal car accident precipitated this first episode. I learned at the time that the shock of such an experience can cause one to have a breakdown even one involving psychosis as had mine. I also discovered that it might happen once and never again. As my mom put it in a conversation between her and me recently, we went with the idea of “it’s never happening again”.
Needless to say, it happened again and again and again and again.
There were roughly 2 years during my college life when I was well, I mean normal. I know you’re probably saying “who is normal anyway?” and I agree to an extent that normalcy is sort of relative and subjective even. However, there is something about losing all recognition of self which makes for a good definition of abnormality. Yes, I’ve been high on some intoxicating substance one or twice before but nothing to date could have compared with the combination of extraordinary thoughts, emotions and behaviour that would characterize my experience of insanity. This added to my complete inability in those times to exert any control over myself whatsoever I considered: not my normal. So for 2 years while in college, outside of being terribly homesick, I was normal.
By year #3, not so much; I began having mania again. Thank God I had a super-supportive social network both at home and in the US (where I was attending school). I survived without medication and minimal visits to the university health centre. By then, I had also met Jesus. I know now that His timing couldn’t have been better. I also know now that my journey with Him was in some ways just getting started.
Over the next 14 years I would endure grievous periods of depression and mania to incomprehensible degrees. Sometimes we assume that persons with bipolar disorder enjoy mania and it can be quite enjoyable. Mania for me has been easier to cope with than depression in the sense that I tend to feel better while it is happening at least at the beginning. When depressed, coupled with feelings of utter desolation comes an overwhelming desire to be non-existent with an increasing confidence that the world would indeed be better off for having been rid of me.
This is worrying to say the least. I’m still not sure, if I had to choose at which extreme to remain whether it would be depression or mania. After a certain point however, during mania, maybe around the time when delusions and hallucinations begin to centre stage along with irritability, restlessness and fear, it all becomes a downward spiral: a bad scene (as my sister would say).
Then, depending on how well I’ve learned to cope, there’s no telling when I’ll move from being rabidly manic to being depressed.
Now feelings/ emotions are only one part of the equation. With mental illness, thoughts (cognition and perception) and behaviour are all severely affected. Often times there are also physical manifestations that come as a result of being psychologically impaired. It can get pretty ugly and let me say here, stigma doesn’t help, whether it be that emanating from others or from within.
To date I have been less often depressed than I have been manic and most recently I’ve had more hypomania than anything else. Admittedly, that too I consider a blessing. In fact, my entire experience with bipolar disorder I consider to be much better than it would have been had I not been sharing the experience with some amazing people. My parents have been irrationally committed; my sister and her family: devotedly consistent; my other relatives: unchangingly present; my friendships: rewardingly sufficient; my psychiatrist: patient, effective and optimistic; my church family: relentlessly prayerful and loving; my academic community: entirely understanding and willing to help; my local bipolar support group members: genuine and consistent and the wider community of illness survivors: exemplary.
I don’t believe in coincidences. My having a relationship with God Himself has made all the difference. It has made me realize that despite all the pain, confusion, frustration and anger shrouded in the setbacks and losses associated with ill-health, I have an eternal supply of joy and hope. Through the relationships He has given me, rather than through the accomplishments I have made, I continue to thrive with mental illness.
The author of this post, Daina, is a 35 year old Jamaican Aunty, pursuing a Masters degree in Psychology and more often than not, loving her life in Christ. She is not yet married and resides with her parents and dog. Diana is looking forward to becoming more of an advocate for people living with mental illness through her blog http://blessed800.wordpress.com through academic and vocational pursuits.
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Diagnosis of a Chronic Illness…
At first, there is some relief. You think, finally I know what is going on. My questions are finally answered and someone actually listened. Now I can move on.
But sooner or later, depending on the person, realities of what the diagnosis means sinks in. For some, a little at a time, for others all at once. Sometimes triggered by events, sometimes by people, sometimes out of nowhere at all. Things will forever be different.
These times can be extremely distressing, exhausting, terrifying, depressing. But, the important thing to remember is you can still be happy. You can still do things, they may just be different things, or the same things but in different ways. With the right support, anything is possible.
Here is a list of 10 things you can probably still do:
- You can tell people you love them. You don’t have to be able to do everything for them. You don’t have to be the one to cook or to clean or to fix things around the house. You may not be able to show them love in ways that you used to. But, you can find new ways to show them. And even in the hardest of times, you can always just tell them that you love them.
- You can smile encouragingly at others that may be going through a hard time as well. If you see someone getting out of their vehicle, parked in the handicap spot, you can smile at them. Even if they don’t look sick, you know they could be going through so many things, and with all of the other rude people in the world, you can be the one to brighten their day.
- You can accept help and support. Others want to be helpful. You may not be the type of person to ask for help easily, but sometimes all people want to do is be able to be there for you, to be able to help in any way possible. Give them that chance every now and then. It will help both of you.
- You can follow doctors’ orders. This is a hard one sometimes, but it can make a big difference in your everyday health, pain levels and attitude to do the things the doctors suggest, whether that includes just taking your medications on time, doing exercises, eating healthy, keeping a positive attitude, or just making all appointments.
- You can kiss your family. Love them. Kiss them. Hug them. All the time. Don’t hesitate to give them love.
- You can laugh. Laughing can be healing. It can improve everyone’s attitudes. It can change your whole day for the better. Laugh whenever you can.
- You can live. You can live your life. If something is keeping you from doing something you want to do, find another way to do it. If walking through the store is too much, don’t be afraid to use the motorized carts. If you want to take your kids to the amusement park, plan ahead and do it. You may have to rent a wheelchair or cart, or bring a walker or cane, or take tons of breaks and drink tons of water, but you can do it if you really want to.
- You can help others. Even something small, like a dollar in the donation can at the store, or something big like heading a fundraising campaign all make a difference. Sometimes the simplest things can be a great help to someone else. Try doing something once a day that is purely to help someone else. Helping others brings joy.
- You can dream. Dreaming gives us a chance to live a different life. You can fly, swim, jump, walk, run, or do anything you want in a dream. You don’t have to wait until you are sleeping. You can close your eyes and just imagine it. See it happening.
- You can be happy. Sometimes people think that because you are smiling, that means you aren’t really hurting or sick. They just don’t understand chronic pain. I don’t think anyone could truly understand chronic pain without having it. A life of chronic pain means that our pain tolerance is pretty high, and that sometimes we can still walk and laugh and smile, even though we are actually dealing with some significant pain. We have to. You can live happily if you want to. You can smile and laugh and do what you want. Don’t let the actions and comments of others dictate how you live your life.Diagnosis of Chronic Illness is hard. It is hard for the one diagnosed, for the family, and for the doctor. As long as everyone is understanding and supportive, everyone can still live a happy, loving life. You can do things. They may be different things now, but you can do them.
The author of this post is a new blogger, Nicole, who can be found at http://enduranceandoptimism.com/
Her blog was created to help support others suffering Chronic Illnesses and to get her own stresses and frustrations out. As her blog is relatively new, I suggest following Nicole and having a read of her posts!
I personally welcome her to the Chronic Illness Community with open arms.
If you have an illness post that you’d like published, please check out our Submissions Guidelines Page.