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RAiSE-ing Our Voice – Jessie

RAiISE-ing Our Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with an invisible illness. 

Hi my name is Jessie and I am 21 years old. I have struggled with my mental health from the age of 14 and have battled with depression and anxiety for years.

When I was first diagnosed with having depression and anxiety and I started telling my friends and my family I got such mixed reactions and learned how people have such different views of the illnesses. I remember for a long time hearing from some of my family telling me that this was all in my head. I remember hearing from close friends and family that they would have never thought I was suffering with it. I was often told about how happy I always seemed and you could even go as far as to say that I usually had the loudest laugh in the room. I have since learned that it is often in any group of friends the friend who seems happiest may just be the one struggling because we often do not want to burden others with our problems.

When I was first diagnosed with depression I was in denial and kept it to myself because of the stigma around mental health I felt like I was completely crazy. It was only lately I have decided that I will no longer be ashamed of who I am or what I have. I have learned that I am myself and not my illness. Once I had accepted all of this and began speaking more openly about my depression and anxiety I have met so many others just like me and have made friends through this. I first began writing about my mental health experiences when people started asking me questions such as “what does having depression feel like” or “is anxiety just feeling nervous all the time” I realised from those questions alone that not many people quite understood just how serious these illnesses can be and how much they can impact on a person’s life. My personal favourite was when I was asked if depression is just feeling sad all the time. So with all of my close friends and family trying to understand my illness I took the first big step on here to be open, honest and explain things the best way I can.

Depression can be different for everybody! I first started noticing signs of depression at the age of 14. This was not long after my father passing away. I was not handling my father’s death very well and was also developing anxiety issues so I began to struggle with school. I went on two years later to leave school as my depression had really gotten the better of me I was missing days and falling behind. When I left school I got myself into a rut. I was staying in bed all day everyday either on my phone or sleeping which caused the depression to really take over. It wasn’t long after this that all the negative thoughts began.

I remember lying in bed each day as my peers were in school and thinking of how much of a failure I had become and how much I had let my parents down. These feelings of worthlessness has stayed with me since. I tend to isolate myself a lot as I like to be alone when I am feeling this low. I did stay in contact with a small group of friends and meeting them for a night out every once in a while had become my only social outlet. I remember staying in my bedroom for weeks on end and was completely terrified to even leave my house. I went on and tried to deal with everything on my own. I somehow managed to put things to the back of my mind and move on, however my depression was still there and still to this day is a problem for me. I often spend night’s in tears looking at myself in the mirror reminding myself of the fact that I am not good enough and never will be. I often cry so loudly that I need to bury my head into my pillows so my family don’t hear me roaring and screaming in pain. I’ve often spent night’s crouched down with my back against the wall desperately trying to hold myself together as I fall apart while the voice inside my head is screaming to give up. I have turned to self harm sometimes and only because this has been my only way of dealing with all of these issues. While others my age may lay awake at night wondering if they have gotten the college course they so badly wanted, I lay there in the same moment begging for my next breath to be my last as I have become hopeless and can no longer see a future for myself. When I get this low and begin to fall apart I am left there in a ball on the floor with the dreaded question of will I make it through this tonight? Once I am finally just too exhausted  from the crying and putting myself down I once again for the fourth time that week drag myself up and back into bed where I get maybe somewhere between two and four hours sleep.
The next day again using every ounce of energy within me to sit up. Once i’m sitting up it takes another 10 minutes to even stand up as I am just so exhausted from the war inside my mind the night before. More often than not these feelings and thoughts stay with me into the morning. Once again sitting at the end of my bed wondering if I have it in me to face these battles for another day. My mind is a bully and in these moments I believe everything it has to say. It tells me “you’re not good enough” and “people wouldn’t notice or care if you went missing” . It also makes me believe that I am just an inconvenience to those around me and that I get in people’s way. However I get up most days …(some days I need that day in bed if I can’t face the world). I go and have a shower and some days when i’m feeling really low I will put makeup on in hopes of feeling a little bit better about myself, in hopes of not feeling so worthless and in hopes of drowning out the voice that is constantly reminding me about how nobody cares about me. On somewhat better days I like to use social media and if I am feeling really brave I might go out and meet my friends. When anybody sees pictures of me or my life through social media it is so easy to assume that I have no problems or worries and just see me as a carefree happy 21-year-old girl just living life. The reason I am writing this is because as I mentioned earlier people often assume to be depressed you must be in all black clothes, looking absolutely miserable and crying all the time

With depression we try to hide our symptoms as much as we can and we try to come across to people as normal as we can. Depression isn’t always black clothes and crying. Depression can be the girl who is extremely bubbly and the life of her group of friends, it can be the boy who has a brilliant job and seems to have everything going for him, it can be the mother with the brightest smile as she plays with her kids in the park, depression can be the friend who comforts others in their time of need because she would never want anybody to feel the pain that she feels. I know all of this because I am that depressed girl. It takes every ounce of energy for me to get through each day when I just feel like giving up. I put up a front of being extremely happy yet not even my own friends and family were aware of just how broken I was until I broke and told them everything. They certainly had no idea I spent hours each night falling apart and believed me when I told them I was ok and just tired.

I was hospitalised for my depression a couple of weeks ago for the first time. I was in a psychiatric unit. This is when I realised my illness was just as valid as any physical illness. There is still so much of a stigma surrounding mental health which needs to change. Nobody should be made feel insignificant for a war they fight in their own mind each day or for any invisible illness whether it be physical or mental illness . We never truly know what is going on is someone else’s lives. I am now in counselling and working with my psychiatrist and mental health team in hopes of overcoming this and having a better future for myself.
To anybody fighting both physical and mental illnesses stay strong and hold on to every bit of hope that better days are coming!

 

RAiISE-ing Our Voice – Robyn

Hello,

I’m Robyn and I am one of the trustees at RAiISE, I got involved having experienced being judged at school for having an invisible illness. I hope by creating a pack that it will inform and highlight that just because someone looks healthy it doesn’t mean that are, and they shouldn’t be judged for it.

Being involved in RAiISE

Through being involved in RAiISE I have met so many inspirational young people who have not been set back by being judged at school, but all agree it needs to change. I finished High School eight years ago and still there are young people experiencing what I did, that is my motivation to make sure RAiISE impacts on our education system and even further. So that young people do not have to go through what we have, a negative experience in school that can affect our future.  I have met children who would rather not attend school because they are scared they will be called a liar and this needs to change.

We need to think as a society what does calling someone ‘lazy’ or ‘slow’ etc effect that person, when there is a genuine reason they may not move as fast or be well enough to take part in an activity. It actually makes that person question are they lazy? are they slow? when it is just a symptom of their illness, this can impact on their mental health leading to other symptoms We need to take more care of ourselves and others and if that is by thinking before we speak, then that little thing that can make a big difference.

 

Why is RAiISE so important?

RAiISE is important as it gives young people the safe space to voice their opinions and health concerns without the fear of being judged or made to feel bad.

It gives the young person control over something in their life when control has been taken away by their illness or condition.

RAiISE aims to change the way the education system views invisible illnesses to ensure future generations to not have to be prejudged or made to feel any less than a person in full health.

My top tips for a young person with an invisible illness from my experience:

  • Take days were you just rest watching films, TV and indulging in your favourite food.
  • Speak to your friends, it will always make you feel better.
  • Make sure you have/do everything in moderation : Food, social media, exercise and revising.
  • Don’t let your illness hold you back! Whether that’s going out with friends or travelling or even going for a job that you think you cant. It can be hard to do this tip but even conquering getting out of bed to go the shops is a win when you’re not feeling your best!
  • Travel !!! You learn so much from experiences and visiting other cultures

Below is a picture of me in New York spreading the work about RAiISE!

Robyn.jpg

RAiISE-ing Our Voice – Siena

RAiISE-ing Our Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with an invisible illness. 

Society still has a long way to go before the needs of people with invisible disabilities are recognised and met. Recently, there has been a lot of public ridicule and criticism about the University of Manchester’s Students Union’s decision to ban clapping and cheering. One journalist, referred to the decision as “bonkers” and as yet another ridiculous example of the snowflake generation’s emotional fragility and lack of resilience. On Twitter, people have been expressing disbelief and mocking the decision. One person felt the decision to ban clapping was so bizarre, that she asked what the world has come to. Others suggested people with sensory issues and anxiety simply stay home. The mostly negative response to the clapping ban really personifies the way most of our society still perceive, respond to and treat people with invisible disabilities.

 

I have several invisible disabilities. I am autistic, dyslexic and dyspraxic. I also have anxiety, hypermobility and ADHD. These invisible disabilities affect me on a daily basis, especially my autism and anxiety. A large part of being autistic is having a sensory processing disorder. In my case, I am very sensitive to noise, lights, smells and touch. This makes venturing out into the world very stressful and challenging. Even the thought of leaving the safety of my home causes me anticipatory anxiety.

 

On an ordinary day, as I head out to secondary school, my senses are assaulted as soon as I open my front door. The sounds of cars, motorcycles and construction work reverberate with a deafening sound. On the tube, people push past me; their perfumes, shaving cream, scented lotions, floral deodorants and morning coffee mixing into a sickly, overwhelming smell that makes me queasy. I begin to feel faint. As people inadvertently brush past me, the place I am touched begins to throb. Before long, my whole body is throbbing.  I try not to focus on the pulsating pain… and the noxious smells….and the cacophony of noise….. and the lights glaring at me.

 

As I walk towards school, I try to shut out the world. I try to shut out the shrieking sirens, the toxic fumes and smell of rotting rubbish patiently waiting on the sidewalk for collection. I struggle to carry my school bag as it gets heavier and heavier with each step. My vision begins to blur.  I focus on walking without tripping. I listen to soothing music as a distraction. I take deep breaths. I think of cuddling my dog. Yet, my heart is racing and my anxiety levels are rising. It has only been half an hour since I ventured out. School has not even begun. I still have the whole day in front of me. Yet, I am already worn down. Exhausted.

 

At school, my dyslexia will emerge. I will have to reread passages over and over. As the other students dive into their maths problems, I will have to substitute all “bs” with an X and all “ds” with a Y, so that I don’t confuse the two. The gleaming, shiny white board will be blinding, making reading the black writing on the board impossible.  The flickering fluorescent lights looming above me will mock me with their menacing hum. The hum and students chatting, will drown out the teacher’s voice. I will focus on trying to pick out her voice from the cluster of noise. If she calls my name, I will not hear her and she will think I was not paying attention. I am only fifteen minutes into my first lesson. I still have the rest of the school day in front of me. Yet, I am already worn down. Exhausted.

 

The school day will be a series of battles, some which I will win, but most I will lose. With each hour, I will become more and more and more mentally and physically exhausted. Eventually, I will short circuit, overloaded by an assault of the senses and worn down by my disabilties. If I am lucky, my shut down will coincide with my lunch break. I will spend my lunch hour in the sanctuary of the school library; recovering and recharging.

 

At the end of the day I will go to PE. This is when my dyspraxia will emerge. My limbs will have a life of their own, refusing to cooperate. I will be unable to hit the ball, to catch the ball or to throw the ball in the right direction. I will be unable to run and to walk without tripping or bumping into something. I will be the last to be picked for the team and the first to be out. I will be embarrassed and humiliated. I will have to smile and pretend I don’t mind. I will become anxious about having to travel back home; overwhelmed at the thought of the walk to the tube station and having to squeeze onto the crowded train. I will feel defeated, worn down and exhausted. I will struggle to fight back the tears as I coax myself to endure the odyssey back home. I will try to summon up the armour I will need to protect myself from the pain, from the smells, from the noise, from the lights, from the chaos of people that will engulf me. I will feel overwhelmed and defeated.

 

Since my disabilities are invisible and I suffer in silence, most people do not understand the obstacles I face on a daily and hourly basis. To me, stepping out into the world is a Herculean task that takes courage and resolve. Instead of capturing or slaying mythical beasts, I have to defeat a sensory overload of noise, lights, smells and touch. A never-ending battle I know I cannot win. When shops have Autism Hour or cinemas have an autism-friendly viewing or a conference offers a safe space (a space set aside for disabled people and others who needed a quiet area), the world becomes more accessible and inclusive for people like me. The world becomes less hostile and less scary. These concessions may seem ridiculous and absurd to others, but to me, and people like me, they are life changing.

 

If I had a serious peanut allergy, people would not mock a school’s decision to ban peanut butter. If I were in a wheelchair, people would not accuse a school of being “bonkers” for installing ramps. Banning clapping and cheering is no different. The Students’ Union recognised that there are University of Manchester students who suffer from anxiety and students who have sensory processing disorders who were unable to attend university debates and talks. Their conscientious decision acknowledges that some students have invisible disabilities that prevent them from fully engaging in student life. By banning clapping and cheering, they have made the university more inclusive and accessible.

 

Societies lack of understanding and support of the autistic community has real life consequences. In addition to our sensory processing issues and anxiety, many of us are mistreated and abused. In a 2017 study by Ditch the Label, 70% of autistic students reported being bullied. I have had to leave one primary school and two secondary schools due to severe bullying. The significant challenges we face from living in a world that is not designed for us has a negative effect on our mental health. According to the National Autistic Society, more than 70% of autistic people will suffer from mental health issues at some point in their life. As a consequence, the suicide rates of autistic people are alarmingly high. According to the NHS, people with autism are almost 8 times more likely to die by suicide. In a 2014 Coventry University study, 66% of people newly diagnosed with autism reported contemplating suicide and 35% planned or attempted to take their life.

 

So as broadcaster Piers Morgan tweets that “Britain’s losing its mind” and that the ban on clapping is giving him anxiety and as journalist Julia Hartley-Brewer and her camera crew barge into a safe space to mock the people seeking refuge from the bustling conference, I and many others are grateful for the kindness and compassion shown by the University of Manchester’s Students’ Union. I wish the rest of the world was as inclusive and understanding of people with invisible disabilities.

 

 

Siena Castellon is a sixteen-year old nationally recognised award-winning autism and neurodiversity advocate. In addition to supporting and mentoring young people with learning differences and autistic young people through her website – http://www.qlmentoring.com, Siena is also passionate about tackling bullying. She is currently serving on the Diana Award National Anti-bullying Youth Board, which has given her a national platform on which to share her bullying experience and shine a light on disability-related bullying.

 

 

RAiISE-ing Our Voice – Niamh

RAiISE-ing Our Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with an invisible illness. 

Growing up with JIA – Niamh Costello, Ireland

My name is Niamh Costello, I am 19 years old and I have had Juvenile Idiopathic Arthritis since I was 3 years old. It only seems like yesterday when I crawled into my parent’s bedroom on my hands and knees. I was screaming in agony and I could not walk. I was this tiny frail body with a huge swollen knee that had been bothering me for weeks now.

Looking back, my Mam thinks that I was born with JIA. I was always slow to walk, I would get tired easily and when I could I would crawl and drag my left leg behind me. I was always napping and would be extremely tired after playschool. Although it was my knee that was the ongoing problem I would always point to and hold my leg when it was sore and I would complain of it feeling tired, I suppose I was too young to articulate what pain was.

I was always picking up infections and viruses so when my parents took me to my local GP that morning I was told that it was just another virus, or that I had fallen on it and to go home and rest it. It all went downhill from there.

A couple of weeks later I was admitted to hospital with a rash and a temperature and this swollen knee that was getting bigger by the day. Lots of tests and scans were done and one day, a doctor who had done some of his training under Paediatric Rheumatology, recognised my symptoms and referred me straight to Our Lady’s Children’s Hospital in Crumlin, Dublin. That is where my lifelong journey of JIA began.

I was diagnosed a couple of weeks later and was put on a high course of steroids. At the time there was no paediatric rheumatologist in the whole of Ireland so little was known about JIA and its prognosis. It was going to be a case of trial and error with my treatment. The oral steroids didn’t work so I was given a steroid injection directly into the knee joint and the fluid was drained. And believe it or not that was it for 4 years! I went into remission and I thought I would never have to see a hospital again. Unfortunately I was wrong.

I remember the day that it came back, I was about to go on a family holiday to England. I remember sitting on a picnic rug and screaming because I couldn’t get up off of it and I looked down to see a familiar swollen red knee back again to haunt me. We went on the holiday which was a disaster. I spent most of the day in my 4 year old sister’s buggy as I physically could not walk. I couldn’t stand for long periods of time, I was drained and in agony 24/7. No pain relief was helping and I just wanted to go home. I felt sorrier for my family as I felt like I had ruined the holiday. The trips to hospitals started again and this time I wouldn’t get a 4 year break.

My illness soon started to spread to other joints which made my day to day life that bit harder. Getting up for school every morning was a struggle. I would have to get up a half an hour earlier during flare up times so that my mam could lift me into the bath and help me loosen out my joints sol that I could attend school. At the start, I would stay off school if I was having a flare up and my mam and I would lie on the couch and cry. Why me I would keep asking; when will this pain go away? Life seemed so cruel. My Mam decided that we couldn’t go on like this. From then on, she would make me go to school during flare ups, if it was the case that I would have to use my wheelchair or crutches I was still made to go in! I hated my Mam for that at the time, but looking back now I was a very quiet child so I would have definitely suffered socially and probably fallen way behind in school work. It also made me hardier and nowadays I tend to push through the bad days and try to continue on with my daily routine as best as I can. Meeting my friends and going to school was also a distraction from the pain.

My friends grew up with my life with JIA so they were always very understanding and a great help to me in school. They would sit inside with me during lunch break if I was too sore to go out and play, they would push me in my wheelchair, take down notes for me if I couldn’t write and little things like that made a huge difference to my wellbeing. They will never understand fully what it’s like to have JIA and my how my illness can fluctuate daily, but as long as they are there for me and willing to help me when I need them, that means the world.

Growing up with JIA did bring its challenges. I missed out on lots of things growing up that were important at the time such as school tours, play dates and birthday parties. I started to realise maybe I am a bit different. I hated being the child that had to sit out of PE class or was not able to go to my best friend’s birthday party or go on a school trip. I hated being the only one in the class that had to use a special chair or crutches.

I loved sports as a child but I was always the last to the ball or the last one over the line, again I was the different one. I was advised to take up swimming, so I did and it was one of the best decisions I made. I took to it like a duck to water (literally!). I wasn’t the different one in the class anymore and I quickly progressed, passing out my peers. I was so happy, I loved the water and it was a sport that was really good for my joints which was a bonus. I started taking part in competitions and I loved going into school on a Monday morning and showing my class my medals. I am so glad I found swimming, it just goes to show that just because you have an invisible illness doesn’t mean that you can’t be just as good as something as someone who doesn’t have an illness.

I remember in 5th class we started school swimming so the 5th and 6th class would go swimming together. We were doing relay races and nobody knew that I was training 3 times a week in the pool as I was in a swimming club. Two 6th class girls were the team captains and I remember one girl saying to them, “don’t pick Niamh, she has arthritis so she will be slow”. Well, I don’t think I’ve ever swam a relay race as fast in all my life! I was going to do anything to prove them wrong.

That was one of the turning points in realising that maybe my peers were also starting to realise that I was different and it wasn’t just myself anymore.

I remember the day that I was told I would have to start injections. I was 8 years old and I remember hearing my consultant say “I think we might have to try the subcutaneous route”. All of these questions were running through my head, I was freaking out! What on earth is subcutaneous, I had awful visions in my head and it was only on the way home in the car that I plucked up the courage to ask my mam what it meant and she said the dreaded word: injections. I hated any sort of change, and this was going to be a big one.

Friday was everyone in my class’s favourite day of the week. It meant no homework and no school until Monday. Not for me, I dreaded Fridays. Friday meant injection day, and a weekend of nausea. My mam would do my injection for me and it could take her 2 hours some days to finally pin me down to receive it. My Granny used to have to come over so that I had somebody to cry into.

Thankfully nowadays I do my injections myself and I don’t need anybody to cling onto! I dreaded going into any hospital and still to this day even the smell of a hospital turns my stomach.

I had to learn to grow up quicker than my peers and start making my own decisions, be it big or small. I was always told when I was younger that I could possibly grow out of JIA, so my family lived in hope. We did everything we could to try and keep my JIA at bay but when I was 12 I remember my consultant telling me that I will probably have this for the rest of my life. When you are 12 that is a shock to the system. All these thoughts were running through my head, how can I deal with this pain for the rest of my life, will I have to take injections forever, will I be able to have children?! I hit a slump and I was very down in myself for a couple of years after that.

I had to learn to adapt the life I wanted to the life that I was given. I had to gain some confidence from somewhere and learn to find my own voice to help my through a life with JIA.

I am now 19 and on a drug that is doing wonders for me. I have started working out in the gym and have completed my first 5km race which 5 years ago I would have never have seen myself doing. I am in University and I am studying to become a primary school teacher, which was my dream.

Don’t let your illness define you, you can still lead the life you want to live just maybe with a few adaptions. I always say that I have JIA, but it doesn’t have me.

 

 

RAiISE-ing Our Voice – Simon

RAiISE-ing Our Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with an invisible illness. 

Meet Simon, one of our wonderful RAiISE Trustees who has been living with a variety of invisible illnesses since he was just three years old.

Hi everyone! For those of you who don’t know me already, I’m Simon Stones – one of the RAiISE Trustees! I’m 25 and I’m from a little-old place called Bolton, just out of Manchester. I have lived with invisible illnesses from a really young age – starting off with arthritis at the age of three, Crohn’s disease at 14, then fibromyalgia at 18. Given that I’ve spent most of my life familiar with the hospital environment, it’s no wonder that I was keen to pursue a career related to biology and the human body! I went to The University of Manchester where I graduated with a 1st class degree in Biomedical Sciences in 2016, before embarking on a PhD as a patient researcher at the University of Leeds, where I am looking at supporting children and their families with arthritis.

How I became involved with RAiISE

I first became involved with RAiISE in 2016, after meeting Sophie and Sammy at a conference we all attended in Barcelona, called the International Children’s Advisory Network (iCAN) Research and Advocacy Summit. We had briefly met once before, at a research meeting on a project we were all advising on, but it was evident just how passionate and motivated Sophie was, as well as how supportive Sammy was for ensuring young people have a voice.

After a fabulous week in Barcelona, we were chatting on the flight home about all the things I was involved with at the time, as well as all the things Sophie and Sammy were involved in. Do you know those moments where you’re so full of ideas and things to do that you’re buzzing? Well, that was one of those moments! I said I’d love to get more involved in RAiISE, and as they say… the rest is history!

 

Why I became involved with RAiISE

Aside from being impressed with the aim and mission of RAiISE, and how Sophie had built the project and soon-to-be organisation from scratch, I had a personal reason why I felt RAiISE was so important, which only further encouraged me to get involved. From the age of three, I have lived with a condition called juvenile idiopathic arthritis, more commonly called JIA. Arthritis is often viewed as an old person’s disease (even today, sadly); therefore, there have been so many struggles over the years to get people to believe me – never mind encouraging them to understand the difficulties I faced. Throughout my education, I’ve faced additional challenges as a result of my arthritis – which is largely invisible. Primary school were incredibly supportive, and this was often my ‘safe space’ as I felt that the staff knew and understood me. Small things such as having a chair to sit on in assembly, and being able to use the staff entrance to avoid having to stand up and queue in the mornings, helped me to make the most of my time at school, without being exhausted before the day had begun!

 

However, secondary school was a different story – particularly during the first three or so years. While many staff were helpful, there were just a few individuals (as well as certain systems and policies) which had quite a significant effect on me. For example, when I was unable to participate in contact sport (such as rugby), to avoid damaging my joints, certain members of staff didn’t understand, and would make me stand at the side of the sports pitch at watch – while in agony with pain and discomfort. Given that I’d had so much of my confidence zapped away over the years, I simply took it on and didn’t say anything. Looking back, I should have stood up more for myself! There were also a number of other smaller things, such as having lessons all over the place on different floors, which made it difficult to get between lessons in a few minutes, as well as being unable to take notes during lessons because I was unable keep up with writing. If staff had a little more support to understand the complexities of my conditions and had guidance on how to best provide support, so many of these things could have been resolved.

 

My vision for RAiISE

RAiISE has so much potential – and I’m so excited to be a part of it! Teachers and other school support staff are under increasing pressures, so I’m really keen to ensure that we provide easy, practical support for them, so that they can do their best to help young people living with invisible illnesses. Likewise, I hope that the work of RAiISE will empower young people and their families to get the support they need – enabling every young person with an invisible illness to achieve their potential.

 

World Lupus Day 2018

Sammy is the mum of RAiISE Founder Sophie. On this World Lupus Day, she shares her experience of being a parent of child with Lupus.

Lupus crept into our family so slowly that at first, initially it was hard to notice as small changes trickled into my daughters’ life. At first the odd strange pain in her shoulder, knee or back was put down to her being tired, overdoing it, or even that she had somehow strained something. Within a couple of weeks her symptoms had got worse and so we went off to the GP hoping for a bit of reassurance. At this time as a mum, I was concerned but not worrying unduly as all of her symptoms could be put down to something that we believed could be explained. Ironically after seeing the GP I was actually more worried, he tried to put breathing problems and all the other things that were starting to affect her everyday life down to a phase, her age and even suggested she would grow out of them. As a mum you know when something is wrong and as she had never had any major health concerns apart from the usual childhood illnesses I began to worry that he was totally getting it wrong.

In just a couple more weeks the symptoms had grown dramatically including hair and weight loss, and severe pain in her joints and chest with incredible exhaustion all of the time. We were quickly back to the doctor and this time saw a different GP. He listened, he actually listened and took in every word my daughter explained to him which was a huge relief. Blood tests showed there was inflammation and for the first time I heard the term JIA or Juvenile Arthritis. The doctor was concerned and so we were referred to our local hospital and my daughter was given some much stronger pain killers.

By now I was extremely worried. I felt totally useless as my beautiful 14 year old child cried herself to sleep, asking me what was going wrong and why was this happening to her? All I could do was promise that we would get to the bottom of it and that we would not stop until we had.  The consultant appointment at our local hospital some weeks later proved disastrous, instead of a paediatric rheumatology specialist we saw a nice but ineffective registrar. She decided we needed to see somebody else and so the  wait for some real answers continued… but just two weeks later with symptoms now at their worst it is safe to say I was worried sick. A phone call to try and establish the date of the appointment ended in total frustration as I was told she would have to wait three more months! Three months doesn’t sound like much if you are waiting for a holiday, a birthday or something fun. Three months when your child is having to miss school, cries regularly with pain all over her body, is losing weight rapidly, with her hair is failing out, and is now limping and sometimes having to be carried upstairs to bed and is fading before you and your husbands’ eyes, actually seems like forever. There was no way I could sit by and wait and luckily the helpful GP was as angry as me! When I look back at that time, I turned into a crazy, protective mother lion as I felt it was a huge emotional scary battle that we had no choice in, we just had to start fighting to find answers.

I am a big believer in sliding door moments, the times in our lives when one sometimes small decisions or choices change our path in a much larger way that we realise. The day when I rang the GP to say we simply could not wait three months was definitely one of those moments. As I suggested travelling to London to see a specialist at Great Ormond Street, he asked me if I would consider Alder Hey Children’s Hospital in Liverpool. Of course I said yes! Within forty minutes we had an appointment for literally the next week.

Less than a week later I more or less carried her into Alder Hey as her walking was so dreadful that day.  It was early April and for the first time since October when this nightmare had begun, I felt that my daughter was finally in safe. I still remember feeling so emotional  as we met the fantastic consultant who reassured us that they were going to help and give us answers. The word relief simply doesn’t touch it. Over the course of a long day she visited so many departments and had a huge amount of tests. Every single part of her body was looked at carefully and thoroughly. At the end of  that long day we were told that they were concerned it could be JIA or Lupus. My knowledge of Lupus was practically zero and so my husband and I looked into both diseases over the next week. The day we went back to Alder Hey for the official diagnosis was a mixture of relief and devastation. As a mum who had felt sick with worry for months I was relived to finally have answers. The reality of being told your precious girl has a lifelong diagnosis of Lupus was very, very hard. A specialist nurse was totally wonderful, answering questions, bringing tea, listening and passing tissues. The support of the whole rheumatology team was beyond words. They were amazing, caring, professional, supportive and kind in equal measure.  I would though have given anything to have swapped places with Sophie in a heartbeat and still would without any hesitation.

Over the last four years the support from the whole Alder Hey team has never changed. My daughter has had countless appointments in many departments, lots of hospital stays and many days hooked up to a drip as part of a management plan to keep Lupus as controlled as it can be. Slowly we got our daughter back and we will never be able to thank the team at Alder Hey for everything they have done.  We have become involved in research and the wonderfully supportive charity Lupus UK. We have become friends with people along the way who have shared our journey who I know will be life long as they have played such an important part in all that has happened over the last few years and an amazing support to Sophie and our family. We have tried to turn the most frightening, scary and heart breaking thing to hit us, into something that does some good for others with the start of RAiISE and other work we have become involved in.  The most important thing by far has always been to keep Sophie and her health stable and safe.

As a mum I still feel like so many other mums who have children going through a life changing diagnosis. At times I am ok, but often I am really angry and ask why did it have to be my daughter that has to go through all of this? This was not what we ever imagined when she was growing up so healthy with so much to look forward to as she became a teenager. Even when things are stable and being managed, life is never the same, you are never totally off guard.  You want your gorgeous teenager to have a normal life, to experience all the fun, laughs and joy you should be having at that age. But the reality of having a teenager with Lupus is that you are always waiting for the next flare or bump in the road.  I worry about what is going to happen in the future and sometimes wonder will Lupus throw us a curved ball when we are least expecting it? I know that no matter how much I do worry about the future it won’t change anything, we will just have to deal with things if or when they happen.  I think what I have learnt is that you will always have times when things go wrong, you do however find strength to get through, you don’t really have a choice!

You learn how to bite your tongue when someone’s response to you talking to them about a bad Lupus flare means they feel the need to tell you how their child has also been ill with a cold or bad cough… hardly a comparison. Trying to explain Lupus Fatigue is also a good one, most people have no idea that a good night sleep is not going to make it go away, if only it was that simple. People can look at my daughter and all they see is a happy girl with a smile on her face. They can’t see that sometimes that is just not the case, inside she is feeling horrendous and even doing the smallest and most normal of things is draining and impossible. It can be upsetting when you think that lovely and very close friends and family just don’t understand. I have to ask myself, would I have understood four years ago before all this started? Probably not but I think I have definitely learnt many things along the way. I know how important it is to talk things through with people who really understand and are going through a similar experience. I don’t think I will forget meeting for the first time a mum who also had a daughter with Lupus. I knew just by looking at her face that we had so much in common and it was so important to talk and listen to each other. I have also learnt how empowering it is for me personally to get stuck in and try and help others who are going through experiences like ours. It makes you feel that although you can’t change what this horrible disease continues to throw at your child, you can in some tiny way try and make it better.

I have learnt how having a child with Lupus impacts on a whole family and how there is no perfect way to get through this, you just have to keep trying your best. I have learnt that sometimes I am strong and ready to take on the world to support my daughter but on other days, usually when I least expect it, I am emotional and can cry at the drop of a hat when I think that everything is unfair. A long walk with my dog can usually clear my head!

By far and away the most powerful thing I have learnt and continue to learn is the unbelievable strength of my daughter. The way she has come to terms with everything that has happened from that very first day of lupus diagnosis has totally blown myself and my husband away. She has achieved so much whilst battling a long term chronic condition that is at times overwhelming and would defeat even the strongest person never mind a teenage girl.  As an undergraduate at university with a fantastic future ahead of her she has so much to look forward to. We are so proud of her. With her passion for research advocacy and charity work, plus an ambition of a career in film production, my daughter has a good future to look forward to.  Lupus will sadly not disappear  but I can say with some certainty it most definitely will not determine the whole of Sophie’s story, she will write that herself.

RAiISE-ing Our Voice – Molly

RAiISE-ing Our Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with an invisible illness. 

Meet Molly, a young person living with Fibromyalgia and Depression. This is her story…

My story.

For the first few hours of this story’s lifespan, I had written one word; I just sat staring at it. It’s a big, scary word, and it’s an even bigger and scarier condition. Fibromyalgia. Nothing would have prepared me for how much it would affect my life.

I have always been slow and heavy. There were times where I’ve been fast, like a young Lightning McQueen. At one of my sports days in first school I won the sprint race, I still have the stickers and photographs to prove it. I loved sports, the adrenaline rush kept me eager. When I was six years old I joined a martial art class; Choi Kwang Do. I felt like I had a place to belong for many years. I achieved two black belts at an early age and was part of the leadership team. I represented the Surrey Demo Team twice in a worldwide competition, coming 2nd in Atlanta, Georgia in 2012 and 3rd in Chessington, London. I had been encouraged to become an instructor by the master where I practiced. I was well respected. I was a mixture of Sporty and Ginger Spice. But as I grew older, I slowly but surely grew out of love. I didn’t have very many friends towards the end of my time there, my commitments to my martial arts were soon overshadowed by wanting to spend more time with my friends and playing football. It was the one sport I felt I had achieved something with.

In ‘normal’ day to day life, everyone would be complaining that I was so slow. I knew I was slow, I wanted to move faster but I couldn’t. It would cause me to fall out with my family because I was always late and wouldn’t do anything about it. When people used to poke and prod me in jest I’d hurt, they’d just tell me to “man up” or “stop being so silly”.

It wasn’t really until I started doing my GCSEs that I started to comprehend how different I seemed to feel to everyone around me. I was always deemed pretty average academically; mostly second set in my classes, always predicted a middle grade. I remember realising that I was never going to be anything special at school and I accepted it, but I never gave up trying to do better. In PE, I was always one of the sportiest girls. Although, I was arguably the sportiest in my tutor group, when it came around the last sports day for our year group, everyone just signed me up to the majority of the events; because, she’s Molly right? She’ll do it. I said no, I refused. That year I was so fed up of being one of the only people to put some effort in, I didn’t care for sentimental value, I was fed up of losing and feeling the whole weight on my shoulders because I was supposedly some saviour to my tutor group. My lack of confidence was most likely the demon of this time. If I had had the confidence I probably would have done alright. But I never wanted to just do ‘alright’. I was striving for better.

I had also started figuring out my sexuality. I jumped into a relationship with a girl for the first time. Keeping it a secret from everyone because I was so unsure and afraid of their opinions. Spoiler! That didn’t work out very well. Whilst I was juggling my mediocre GCSEs, I had family issues to contend with; my Uncle and Aunt had both been diagnosed with cancer, my Mum and Auntie were in a massive argument. I had issues with my sexuality and my then girlfriend was mentally abusive — although I didn’t realise it at the time. I vividly remember being in such a dark hole that I would just burst into tears in my lessons and had to leave. I remember vividly being told by some that “I’m too young to be sad/depressed”. I had resorted to silently crying in my room because I was unable to think as so many thoughts and problems filled my mind. I threw myself into my Spanish lessons as they were the only lessons I enjoyed and seemed to have I slight knack with. I came out with an ‘A’. I was over the moon. But I had also achieved a ‘C’ in PE, a whole grade below my target grade. I got to thinking, “maybe if I was faster I would have received a better grade?”, “maybe if I wasn’t so average I’d have done better?”, “If my hip hadn’t given way, maybe I would have made it further in the run?”. My heart sunk, I hadn’t done well in one of my favourite subjects. A tiny part of me knew that it was all part of a bigger issue. I went from feeling like a hybrid spice girl to a “Wannabe”.

My first year of college wasn’t as I’d expected it to be. I hid behind a facade and I was in a toxic relationship. I enrolled on a sport course, playing for Chelsea Foundation under 19s. The title sounds fancier than it was to say the least. I remember being the second goalkeeper on the team, I knew I wasn’t as good as the other girl and had many games on the bench to reinforce that. I played one game, we lost. It proceeded to go downhill. I ended up missing months of college as I was bed bound. It took what felt like forever for doctors to figure out what was wrong with me. I was 17 and had to depend on Tramadol to move. Osteopathy seemed to be the most appropriate treatment, I was diagnosed with a twisted spine and a twisted pelvis due to Hypermobility. I weaned myself off the Tramadol – which I was congratulated for by my doctors as it isn’t normally that easy.

When I reached the second year of college, I had a fresh start. I was single, had met an extraordinary, kind, beautiful girl. I was applying to university. I had good friends and I no longer had to exclude myself or felt the need to keep quiet about myself. I was able to move. I was playing more games and doing more training sessions. I was fit and healthy, or so it seemed. On the last game of the season, we had a 4-2 win; I tore two ligaments in my ankle. Just my luck!

This is when my health started to really deteriorate. It was like I stepped into a trance. It was frustrating, being so happy but being so sad. I had achieved the top grades to get into the universities I had applied for. But, I knew something needed to change. I had plans to go interrailing (travelling around Europe by train) and work in my gap year.

In the meantime, my Mum had been doing some research and spoken to one of my aunts who has the same condition as me. This is when she started to realise that I needed help. We visited a Rheumatologist at my local doctor’s surgery. He was puzzled. I went through months and months of research, blood and urine tests, and speaking to various people. There is not one thing that we didn’t test.

We decided to go Private and booked in to visit a specialist. My Mother and I felt that being on such high doses Naproxen, Co-codamol and Melatonin was more than enough medication for me to be taking at my age. Even my GP agreed.

I remember my appointment so vividly, which is ironic bearing in mind the awful ‘brain fog’ I had, and continue to be, plagued with. He simply asked me, “So what do you think is wrong with you?”. My answer was a flood of tears. I said “I was hoping you could tell me” with a crack in my voice. I opened my eyes to see a box of tissues. The doctor was kind and had a good sense of humour, exactly what I needed.

He tested my hypermobility and put some pressure on certain points in my body to see if they were tender, which they all were.

“I think this is a case of Fibromyalgia and localised Hypermobility”.

I sat up and cried. A part of me hoped that this would be a short time illness or something easily curable. I felt a multitude of emotions; relief, anger, joy, sadness. He talked us through potential reasons why I could have this illness and what I could do to improve my health.

I sat quietly, not saying a word, with tears streaming down my face for the whole journey home.

I have lost many friends, my confidence and feel like I have been deprived of a fit and healthy life. I have been called a liar and snubbed.

However, I will make more friends. I will continue to gain confidence. I will raise awareness. I will be fit and healthy. I will do well at university. I will take care of my mental and physical wellbeing. I will travel the world.

I am not a normal 18-year-old. I am not unreliable, my illness is. I will have good and bad days. I have a supportive partner, friends and family, and we will cope.

I have cried many many tears, and I will cry many more. But I will not let this stop me from being the best me I can be.

I have Fibromyalgia and this is My Story.