Greetings friends!
In the last year whilst I have been sharing my experiences with you, I have also been following the journeys of so many other people living with chronic illnesses. I have found these posts, videos and stories inspiring and courageous so I decided recently that I wanted to feature a handful of these amazing people on my blog. So was born the project "Tired Girl Stories".
In this post, my friends from the chronic illness community are taking over! Each of them has a story to tell, all with invisible illnesses, but all wildly different. They're going to tell you about their diagnoses, their experiences, and what they would do if they were no longer chronically ill.
I hope their stories will open your eyes to life with an invisible illness, and how despite all being young and looking healthy, they are all fighting daily battles you wouldn't know about by looking at them.
Alana - Berkshire, UK (@lanibelle97)
Hi everyone, I’m Alana! And I am 23 years old, I live my day to day life with a chronic illness called POTS. (postural orthostatic tachycardia syndrome) I was diagnosed just over a year ago. many people haven’t heard of my condition before because it is very rare.
My illness means my nervous system is dysfunctional. I struggle to regulate my heart rate and blood pressure.
So, as you can imagine I get very out of breathe and extremely dizzy!
Since I was young in primary and secondary school, I remember not being able to be like everyone else. During PE I could never do anything “as good as everyone else” I’d struggle in every sport due to my body aching all over, because of my heart doing too much work!
I’d then become absolutely exhausted and all i wanted to do was sleep!
So, because of being “rubbish” I felt no one ever picked me to be on their team! .. I never knew during school I actually had a medical condition I just thought I got out of breathe quickly! And I was absolutely wrong.
When I was diagnosed just over a year ago, I learnt new things about my body everyday and I even do to this day!
I never knew why I couldn’t get up the stairs without stopping, couldn’t do a gym class, couldn’t go clothes shopping without sitting down on every seat I saw and falling asleep on the way home. After my day at school I would go straight to bed for about 4 hours the moment I got home.
Everyday I have to plan out my day, because if I do too much, the next day or two I have to “recover” - this is to sleep or sit on the sofa all day!
I always thought I was “lazy” but once I learnt about my body I learnt I was “normal” and had to accept that this is me now!
Thank you for reading!
If you have any questions on my condition, feel free to send me a message!
Olivia - Florida, USA (@chronically_olivia)
Hey I’m Olivia! I have hypermobile ehlers danlos syndrome (hEDS) and suspected pots! I also have some undiagnosed GI issues. I’m 18 now, but since I was 10 I have
dislocated/subluxed both knee caps hundreds of times! I had failed reconstructive surgeries in the beginning years of high school and in 2019 I found a new surgeon to redo those surgeries. The surgeon said my ligaments and knee structure was consistent with a connective tissue disorder, and sure enough I was diagnosed with hEDS. On the outside I look totally normal but in reality I deal with pain constantly, digestive issues, heart rate irregularities, dizziness, and so much more.
I’m determined to not allow these chronic illnesses change my dreams. If there was a cure created tomorrow I would go to college and just live out a normal life. All I could ever ask for is just a normal day with no pain and no sickness! Although it would be nice to workout or travel all over! I also would never question my goal of becoming a surgeon. Feel free to follow my journey!
Katya - London, UK. (@positivelychronictravels)
My name is Katya, I'm 25, I'm from London and I was diagnosed ~2 years ago with multiple chronic illnesses including Hypermobile Ehlers Danlos Syndrome (hEDS), PoTS, Fibromyalgia, Chronic Migraine, CFS/ME, MCAS/allergies, Hayfever, IBS, Asthma, Scoliosis, Sciatica, Eczema & Psoriasis and many more associated symptoms!
Since receiving the diagnoses I was sent in many directions to help with daily management of these conditions, most of which have no cure and "treatment" is simply to improve quality of life.
I created my account to share insights, tips and resources to help other people who have recently been diagnosed with similar conditions, to have suggestions on what may help them all in one place. I had been planning for years before to travel, and when I was diagnosed my main concern was that I'd never be able to travel and I was searching the internet for a place that would tell me that I'd be able to do it and the ways to prepare. I couldn't find that when I was preparing for my travels, and I wanted to share what I've learned during my experience of travelling with other people in the community, in case it helps make even just one person's journey easier than mine!
What would you do if they suddenly released a miracle cure & you weren't chronically ill anymore? I would go skydiving over the Great Barrier Reef and do a diving course somewhere with incredible marine life (my neck subluxes so I'm not allowed and I've always wanted to). I would go to a festival and have the energy to dance all day and hack the loud music and walk around without being in agony. I would go out and see my friends socialising SO much more frequently than I usually do. I would eat all the fruits, nuts, vegetables and other foods I'm not allowed to eat from my current allergies! But I would still love creating recipes, eat an abundance of healthy non-processed foods, be eco friendly, live a toxin free lifestyle, listen to my body and nurture myself with mindfulness and meditation. My chronic illness has shaped who I am and my perspectives on life (often things that many don't realise until a lot later in life) and I actually wouldn't change any of that!
Cat - Idaho, USA. (@chronicfightclub)
Hi, my name is Cat! I have been struggling with chronic pain ever since I was a child, but I never really thought much of it before. The pain would come and go, and I thought it was normal. In November of 2018, my body started behaving in ways I had never experienced before. I was struggling to walk because I was so dizzy. I couldn't figure out how to talk correctly. I was having trouble getting out the words I wanted to say, and I was stuttering a lot. I also started having trouble with my memory. After a visit to the ER proved useless, I sought out a family care doctor. We discussed the possibility of me having Lupus, and began doing a myriad of tests. Almost two years later my conditions have gotten worse. I live with chronic pain, chronic GI issues, chronic fatigue, memory loss, and balance and speech issues. All these things have currently gone undiagnosed. I have theories of EDS with either Lupus or MS. My GI issues are still undiagnosed. We are managing a lot!
If I were no longer sick I would go run and climb and hike with my son. Those are all things I wish I could do without pain or trouble breathing and a raving heart.
Elinor - Bath, UK. (@ellellell_brown)
Hi, I'm Elinor, I'm 21 years old and I have been chronically ill with chronic fatigue syndrome (and anxiety and depression) since I was 15-ish, diagnosed at 16.
I was in Year 12 at school (around 16/17 years old) when my illness really hit its low point, my life was hell. I was severely depressed and leaving the house caused a lot of anxiety and frequent panic attacks. I went through the available treatments and they did basically nothing, if anything they made everything worse because I lost hope of ever being better or happy ever again.
The next year I was put on anti-depressants and a couple of other meds and slowly I began to enjoy some things again.
I did an extra year at sixth form. I was heartbroken when my friends all went off to uni because I couldn't go - I was too sick.
At the end of the next year I still wasn't well enough to go to university, everyone I knew left for a second time. I was incredibly lonely and barely left the house that year. I was determined that I would go to university the next year.
And when September 2019 rolled around, I started at university, it was a dream come true! It was hard but I was the happiest I'd been since I was healthy. I made AMAZING friends and created amazing memories.
The Coronavirus cut my 1st year at university short, and created some problems for me with anxiety and flare ups but it has still been one of the best years of my life. I just found out I received a 1st for my first years at university!
If you want to know more about me and my chronic illness, I have a YouTube channel dedicated to chronic illness, mental health and fun lifestyle stuff! The link to my channel is in my instagram bio.
What would I do if a miracle cure was released tomorrow?
To be hoenst, I definitely never expect to be "normal" and that's OK with me. But if there was a miracle cure... I would do all the things I've missed out on for years. I would travel the world, I would do sport and get a job... I would do EVERYTHING!
Emily - Australia. (emilykateimages)
Hey, my name's Emily. Known as Em to most. I was diagnosed with ME/CFS, depression and anxiety in 2009 during year 11. A few years later I was finally diagnosed with Fibromyalgia and Endometriosis. I've gone through years of varying degrees of severity. I improved after several years and then relapsed again. I'm still building myself back.
What would I do if I weren't chronically ill anymore?
I'd get more active with the things and the organisations I'm passionate about and immerse myself in learning more and helping others in any way I'm capable of doing. I'd get back into horse riding on a much more regular and consistent basis. I'd also be very tempted to pack up and go and visit my insta friends living interstate and all over the world!
Annabel - Cheshire, UK. (@annabelsnook)
I have had chronic fatigue syndrome for three years now, this picture was taken on my 21st birthday back in March - just before lockdown. If I woke up tomorrow and there was a cure, I would go and do all the exercise I wanted, knowing that pain and exhaustion would not follow in the same way. I would wake up refreshed and energised everyday being mentally, emotionally and physically able to do anything I wanted - as I did once before but had no idea at the time!
Haleigh - San Antonio TX, USA. (@halethecity)
Reality hit hard, bringing the loss of my MIL and a big surgery at the end of 2016. After so much pain and hiding, I finally had no choice - people were seeing my pain, my physical pain flared after losing my career which sent me into a pit of bad mental health. With my husband and friends by my side, there was hope, light at the end of these ups and downs.
Today I am so thankful for my friends and family, today the rollercoaster is more manageable. I know what to expect and when there is a huge hill ahead I know the warning signs.
Today I deal with chronic joint pain, fainting due to POTS, mental health issues such as OCD and anxiety, among others.
Bethany - UK. (@bethany.niamh)
Hi, my name is Bethany and I have ME/CFS and orthostatic intolerance with syncope (long name but basically like POTs). I was diagnosed 3 1/2 years ago after very suddenly becoming extremely fatigued and unwell. A day in my life might look like resting in bed, watching some Netflix or listening to an audiobook and maybe doing a bit of crochet. For me, my fatigue and other symptoms still dominate my life. If I was no longer chronically ill I would do so many things! I’d start dancing again, I used to do ballet and modern before I became unwell, I’d study, go on walks in the countryside, spend time with family and friends and so much more. I’d do all these things without having to calculate whether it would exhaust me/if it would trigger lots of payback or even a relapse. I’d be free.
Anna - Berkshire, UK. (@afibrofriend)
My name is Anna, I'm 21 and I have fibromyalgia, chronic pain syndrome, joint hypermobility syndrome and IBS! I've had most of these since I was around 13 - still not sure if they run in the family or if they were triggered by illness/injury.
It took me 5 years to get an official diagnosis, despite experiencing pain for years and being told it was "just growing pains". I had a 2 week stay in hospital to increase my mobility and have CBT and OT therapy when I was 16, which did help for a while. However as I've got older, the pain has definitely gotten worse and new symptoms have emerged.
I manage most days with the help of meds, heat treatment, a walking aid and CBD oil, but I still have very bad days and am searching for more ways to help my condition. I am still fighting for more help and to look at other solutions, but it's draining, and no one seems to be able to help.
Having little energy really gets to me and I often mourn the life I could have had as a kid, and the things I could be doing now. I can't remember how it feels to not be in pain. Despite all this I got a first in my Criminology and Psychology degree this year, so I could not be prouder of myself!
If they released a miracle cure tomorrow, I think I might pass out in disbelief! Being chronically ill has made me who I am today, but if I wasn't chronically ill anymore I would love to just enjoy a more 'normal' life. Being able to exercise properly, not having to cancel plans, being able to drink alcohol more and party with my friends, to see the world without worrying how my disability will hold me back. It would just mean life wouldn't be such a constant battle.
Erin - Rhode Island, USA. (@erin_m_fitness)
Hi! I'm Erin and I have systemic juvenile rheumatoid arthritis (JRA) much like adult RA. I was diagnosed when I was 18 but had symptoms for 4 years prior. A day in my life looks like waking up early to do work on my own business then getting a workout in if my joints are feeling okay, then I work full time as an engineer.
If I was no longer chronically ill, I would sleep a lot less and be able to do some of my favorite activities with less pain. I'd travel the world and ski the mountains of Colorado, go to the beaches of Hawaii and spend time appreciating the little things!
Asty - Hampshire, UK. (@m.e.andmotherhood)
My name is Asty and I was diagnosed in 2010 with M.E, having had it for 4 years already. Prior to that in 2004 I had a diagnosis of Post Viral Fatigue. In 2010 I was just about to turn 18, in the middle of a college course I hated but swapping to one I loved. My symptoms include fatigue, muscle/joint pain, brain fog, among others! I’ve gotten to a point I can’t remember what’s actually M.E and what’s just me now because I’ve had this so long!
Over the years I’ve had some ups and some downs. I finished the course I swapped to with some alright grades, did another college course which was a year long and again I did okay. I then went to uni, I purposely went to a uni I could stay at home for so I could rest as much as possible. My first year of uni was hard, I struggled to do an awful lot and I was often late and I remember one time being late and being kicked out the session because of it. It caused so many issues which ended in my mum speaking to my lecturers! I should point out I did my BA in Fine Art so it’s very practice based and not a lot of teaching time. So first year was such a write off. Second year was awful because I chose to be a studio that had hardly anyone in my year in and the third years were very up themselves which made having any space difficult. The first few months were great and I made some amazing friends but after that it went down hill. Third year was my year, I moved studios, I had some really great friends and I was managing to be in uni from 9-5 everyday as well as working part time. And things were going really well, I was feeling really well.
Well obviously after graduation that changed
Everything slowed down, I was still working part time, still trying to do art but struggling and I’d already signed up for an MA because I thought I could do it.
I finished my MA with a better grade than my BA but it was the hardest year of my life.
I started online dating which resulted in 2 very different traumatic experiences, one of which has left me with PTSD, my grandfather died of a stroke and my other grandfather had a stroke less than a month later.
But I met my husband so it’s not all bad!
I finished my MA and had a rubbish year of broken arms and trapped nerves, and too many new jobs to count! Then I found the job I technically just left but that’s a whole other story!
In December 2017 we found out we were pregnant! I have PCOS, I was always told it would take me forever to conceive and it may not be possible, my risk of miscarriage was high, etc. since age 11 I was told this so naturally I spent my pregnancy in panic. We so wanted our baby but I couldn’t relax mixed with pneumonia, clots, bleeds, car accidents and a massive trigger of my PTSD I was glad when the pregnancy was over!
That being said my M.E symptoms were so much better during pregnancy and the first few months of motherhood.
2 years down the line and bar a few flare ups I’m doing so much better because having a child spurs me to keep going and getting better for him!
I have found that keeping going keeps my symptoms under control, routine helps, if I stop/rest too much I then can’t get going again, so little and often works well for me. I’ve even managed to take up running and recently lost 3 stone which has improved my aches and pains, and my asthma, though I know weight lose isn’t a cure for anything just removing some pressure.
If there was a magic cure I don’t think I’d take it! Yes it would be lovely to be able to do everything but I am the person I am today because my conditions helped to shape me to get here and while I believe my conditions don’t control my life I also wouldn’t be me without them.
Emily - Nova Scotia, Canada Canada. (@chronicallyyemilyy)
My name is Emily, i’m 17 and I’ve been chronically ill since I was 5 years old. I have JIA, uveitis, hyper-mobility, as well as some mental health issues.
To be completely honest, I don’t remember my life before I got sick, which is both comforting and sad. I’m not ‘mourning’ a life I can’t have anymore, but instead a life I never had. Since starting my account I have been working on building a community of people experiencing similar things that I have (which is so important!).
Recently, I have been able to volunteer with a nationwide camp for kids living with rheumatic diseases and I started a chapter of the Teen Autoinflammatory Group in my city for kids and youth to connect with each other.
If I could give advice to someone newly diagnosed with a chronic illness I would tell them to remember that you are surrounded by people who want what is best for you and leaning on those people does not make you weak!
Liv - West Yorkshire, UK. (@littleworldofliv)
Hi, I’m Liv! I’m 21 and I was diagnosed with ME in 2019. I’m still relatively new to life with a chronic illness, but I’m learning more every day about how to manage my condition, and more importantly, how to accept it.
I’m a total perfectionist so my main problem is always pushing myself too far - so if I could have a day off from my chronic illness I would probably have some sort of 24 hour schedule to achieve every single thing I need to get done, and it would all have to be absolutely perfect!
The main thing I’ve learnt is that my disability isn’t the end of my life- I think a big part of this was discovering the Instagram community. Seeing other people living with my condition, or similar conditions, really made me realise that I wasn’t alone. I’ve met so many amazing people through having my illness. Being diagnosed with a chronic illness can feel like a terrible, worst case scenario situation, but I’m so grateful for the friendships and insight it’s brought me!
Barney - North Carolina, USA. (@barnaynay1214)
I'm 31, diagnosed with Osteoarthritis, EDS, POTS, Raynauds, IBS, and lots of little random things. I was diagnosed with OA in my spine and extreme hypermobility everywhere at age 12, Raynauds at age 20, EDS and IBS at 26, and POTS at 27. I work full time as a manager of a department at a casino, started a side business of forever floral designs, and am training with street medics for different urban needs from protests to festivals. I spend my days off trying to recover from pain and exhaustion, and keep my POTS attacks as minimal as I can, as it's summer, and the heat this year is atrocious! Doctors are very untrained in my diagnoses and don't offer much help beyond, "lose weight". I am a fat kid, but blaming my weight for a genetic condition is a bias that I think it's part of why my diagnosis took so long. But biases based on gender and size is another topic that has happened for centuries!!
If I wasn't sick, I'd be more active in general, especially in health care, and would have pursued being an EMT further or a doctor. I wouldn't have stopped karate, softball. Or roller derby. I probably would have tried out in rugby. But then again, this is all I know, the daily pain I thought everyone had. So I can't fully imagine what I'd do, other than what I feel like I can't do that I wanted. If that makes sense...
McKay - Washington, USA. (@chronically_sick_)
My name is McKay! I have PTSD, misophonia, Depression, Anxiety, Tarsal Tunnel, Plantar fasciitis, and undiagnosed Lyme, and undiagnosed hEDS.
If I was no longer feeling ill I would play soccer again, go on lots of hikes, and travel a lot more!
Lauren - Essex, UK. (@_chronically_lauren_)
Hi, my name is Lauren. I am 26 years old and currently living with multiple invisible illnesses including; Hypermobile Ehlers Danlos Syndrome and Generalised Anxiety Disorder.
Now, you may think that my anxiety was caused by my diagnosis of EDS (and that would be an entirely fair assumption) but that isn’t the case. I have had anxiety for as long as I can remember, I just spent years trying to convince myself that it was all in my head.
However, whilst I have had some form of anxiety for around 2 decades, living with multiple invisible illnesses exacerbates it to the point where it’s exhausting.
It wasn’t until recently that I realised that my heightened anxiety was connected to my EDS but when I think about it, it makes complete sense. I can’t even walk without constantly thinking about every step I make and how it will affect my joints. I am constantly hyper aware of every single joint in my body and whether they are close to dislocating or not.
Someone without EDS would run to catch a train without a second thought. I have to think logically about what shoes I’m wearing, how stable my knees and ankles feel and how long it will take me to recover from that run. I then have to weigh that up against how important it is for me to get that particular train. This sort of decision-making process takes place for everything I do.
It’s hard for anyone living without a chronic illness to comprehend how we have to make decisions about everything as most of the time they don’t even think about what they’re about to do. However, the reality of my life is that every single thing I do has a calculated thought process behind it. Unloading or stacking the dishwasher has been carefully thought about, taking the bins out has been meticulously planned to minimise the “what ifs”, even just taking a shower involves a heavy decision-making process.
The fear of what could happen overwhelms every thought and even if I eventually make the decision to say yes to something, you can bet that my overwhelming thought for the whole of that particular event will be all of the negatives that me attending said event could and most probably will cause.
Add to this the fact that the symptoms of EDS progress and on top of the constant anxiety of how my daily decisions are going to affect me, I also have the anxiety of this potentially being the healthiest I will ever be to deal with as well.
I often wish that I could wake up with no anxiety and no health issues and just live my life and then I wonder what I would actually do if that happens. I can’t remember a time that I haven’t had to meticulously plan everything, so I’ve never actually thought about what I would do if my illnesses magically disappeared.
In all honesty, I would probably be really boring and just enjoy a day of not having to constantly think and worry about the “what ifs”. I’d just enjoy the simple things like running to catch a train, going food shopping without worrying about my kneecap dislocating as I turn each corner and I’d enjoy a full day at work without feeling sick, dizzy and exhausted.
Charlotte - Berkshire, UK. (@thediaryofatiredgirl)
You all know me, but I wanted to add my two cents to the question "what would you do if you were no longer chronically ill?"
I asked this question because I wanted to highlight how much chronic illness takes over a person's life. The things that able-bodied, healthy 20 year olds don't think twice about doing are often things that become incredibly difficult (or impossible) for those of us with a chronic illness.
I wish I could say that I am at peace enough with my illness that if there was a miracle cure released tomorrow, I wouldn't take it. But the truth is, I would be the first in line. I want to be able to experience New York as someone who can take the subway to Times Square, see a show on Broadway and experience Manhattan from the top of the Empire State Building all in one day. I want to spend my weekends site-seeing instead of resting up for the next week of work. I want to be confident in my ability as a research scientist, to work full time hours without collapsing at the end of the day. I want those things for myself. I want those things for other people with chronic illnesses.
The research we need to ever be able to do those things isn't happening on a large enough scale. For years we were lead to believe that chronic illnesses were all in the head, that the pain was not really there, or the exhaustion was exaggerated. The research into these illnesses is decades behind other diseases, and the funding still isn't there.
I hope one day I can do those things, that there is a miracle cure, or even an effective treatment. I am hopeful for myself, and my friends.
A huge thank you goes out to everyone who took part in this project. None of this would have been possible without you!
Love,
Charlotte. X
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