Hello everyone! Welcome to the 2nd post for Invisible Disabilities Week! In yesterday’s post I talked a little bit about my story with invisible illness and shared a poem that I wrote about when I was diagnosed. In this post, I thought it would be good to share other people’s stories with invisible illness!
I hope you enjoy getting to know some other invisible illness bloggers, and make sure you check out their blogs and social media!
I’ve had ME and Fibromyalgia for the past 7 years, dealing with an invisible illness at such a young age has been so difficult because there’s such an expectation of health when you’re young. Whenever I first started asking for help or using my stick, I was constantly told “you don’t look ill” or “you’re too young for that”. Even now, when I use my stick, people ask me “what have you done?” – I mean… It’s a leopard print walking stick, it’s not exactly the sort the hospital give out for a sprained ankle. Fielding people’s questions and comments and learning not to let them affect you has been one of the toughest parts for me about having an invisible illness. But hopefully, with more education and awareness, this can change!!
Being diagnosed with a chronic illness is hard. Especially when you go through 21 years, with having 10 of those years getting diagnosed with something new every year. You feel relieved to know what the problem is, but also filled with grief, that part of your life may now be over. The diagnosis that has probably impacted me the most is my diagnosis of CVID. CVID [Common Variable Immunodeficiency] is a primary immunodeficiency, in which someone’s immune system is broken and/or a part is missing. Have you ever seen the film(or read the book) of Everything Everything? To some with CVID, it is a reality, that leaving the house cannot be possible.
Thankfully, my CVID gives me similiar effects, but doesn’t stop me leaving the house. When I was born, my mum knew instantly something was wrong. The first few years of life I was a very sick child, but back then they put it down to post-natal depression (what the mum gets, the child gets) or post-birth trauma. At 10 years old, I caught the dreaded swine flu. My parents were told the worse was going to come and to prepare for anything. This was the first sign something was wrong, how could a strong, young girl get SO ill right?
Doctors were confused. Swine Flu was an epedemic, but for me to catch it so easily, was unseen. Even my neighbour had swine flu, but a very mild case, so why wasn’t my body fighting it as well? From then the fight started. Did I just put myself in these situations where I’d catch things? What was my diet like? Why would my weight fluctuate? Could this cause harm to my immune system? All these questions the doctors could of asked with blood tests and thorough examinations, which only took 7/8 years to do.
Going through this process has taught me a lot. It’s taught me to live my life as every day comes, and make each day significant. Even if it means when I’m feeling very down, to try and brush my teeth because then I’ve done something that day. I’ve also learned that, even though doctors are the ones with “experience”, we are the ones who get the real experience.
At the age of 8, I had my first ever invisible illness diagnosis. 13 years later, and I’ve now been diagnosed with a total of 8 invisible illnesses. I was told by doctors that I was faking it all, because I was lazy and wanted to stay at home. My friends told me how ‘jealous’ they were about the fact I didn’t have to go to school. My teachers told me how I would never account for anything if I didn’t have any GCSE’s behind me. My neighbours thought I was over dramatic when I had an ambulance outside my house every single week. I was told it was impossible to be so young and be in so much pain. At the time, it was the most horrific nightmare that seemed like it would never end. But you know what? I’d never change a single thing about it. Being chronically ill changes you as a person, and I honestly would not be the person I am today if I hadn’t had suffered as bad as I did back then. I wouldn’t take back the hospital appointments, the doctors telling me ‘it’s all in your head’, the months and months I spent confined to my bed. None of it. If I wasn’t chronically ill, I would never have the fight in me that I do today. I proved everyone wrong who said I would be nothing when I was older, and I will continue to prove it to them. Just you watch me.
Before diagnosis I was in tears every time my tests results came back negative. I was just hoping they’d find something to explain all the pain and weakness. You start thinking that you must be the only one on earth with this problem if they don’t know about it yet. It’s frightening.
Then when I got my diagnosis I was in disbelief. Firstly because they called it fatigue and I knew what I had was way worse than fatigue. And secondly, they could do nothing for it. I was sent home to manage it alone.
Since being ill I have learned many things. I’ve learned that doctors don’t have all the answers, I treasure those who are brave enough to admit it. And I’ve come to realise that many doctors unfortunately don’t listen to their patients anymore and are more concerned with ticking boxes and prescribing pharmaceuticals than investigating the causes of our troubles and solving the puzzle that is our health and well being.
I have learned that most people in your life will fall away when you don’t get well after a few months. There are few people who are strong enough to watch you suffer and brave enough to walk that long road with you and willing enough to make sacrifices to support you. But those few who stay are precious and they hang around out of love. One of the biggest lessons though, has been that not all illnesses and disabilities are visible.
The full blog post will be shared as part of the Blogging in Bed series.
I was 24 and halfway through my teacher’s training when my first symptoms began to appear. I began getting tingling in feet, which soon started increasing in intensity and then spread to my hands. I went to the doctors but they weren’t too worried as I appeared healthy and all my blood tests had come back fine.
I then started to become very dizzy. The summer went past with me spending my days in bed and wobbling around the house. Over this time numerous other symptoms started appearing: loss of co-ordination, numbness over most of my body, fatigue, vision problems, Lhermitte’s sign, the MS hug and constant dizziness.
I saw more doctors but none of them seemed to be too concerned, so I ended up turning to Dr Google. The only answer it had for my symptoms was MS. I ended up taking the decision to seek help privately and within a couple of months the diagnosis came.
By the time I was diagnosed I felt relieved. The months leading up to it had been a really frightening time. Finally having a diagnosis meant I could finally regain some control over the situation.
It has now been nearly four years and I have learnt so much since my diagnosis. I have learnt to look after myself, and to put my health first. I have learnt to appreciate the little things in life and to do what makes me happy. It has also put me onto a path of volunteering and trying to help others with MS.
Having MS has been hard, but it’s also made me into a happier, stronger and more confident person. It’s made me into the person I am today.
By Heather and Dizzy
When I was first diagnosed with Coeliac Disease my first reaction was relief that everything I had been suffering wasn’t all in my head. In the 4-6 months proceeding my diagnosis I lost about 3 stone in weight, was vomiting multiple times a day and was suffering with horrendous stomach pains as well as other aches and pains around my body. There were numerous other symptoms to but my memories of that time are very hazy.
I was lucky to be diagnosed pretty quickly with Coeliac Disease it took about six months from me first displaying symptoms. However since that diagnosis almost 2 years ago my health has continued to deteriorate and I am now waiting to see a specialist for further tests.
I found many of the doctors I saw before my diagnosis were unhelpful, rude or downright dismissive. They would pass me from one to the other no one ever really tying my symptoms down to being just one thing. I became so ill that I ended up being hospitalised and still it was hard to get anyone to take me seriously about the level of pain I was in. While I was in hospital I was seen my many different teams and fortunately the Gastroenterologist ordered and endoscopy and the results from that gave me my Coeliacs diagnosis.
It has being a learning curve since being diagnosed. I have had to look at my diet and nutritional needs, and that was to be suspected when you have to cut out such a massive part of your daily diet. I have also learnt that many chronic illnesses and autoimmune diseases are intertwined and that having a diagnosis isn’t always the end of the story. The saddest thing has been learning that doctors are still as dismissive. Fortunately I have found one excellent GP at my surgery who really listens.
I just want to say a massive thank you to all of these lovely bloggers for getting involved and helping me spread awareness for Invisible Disabilities Week!
I really hope you have enjoyed reading this post!In tomorrow’s post I am talking about the 5 things you maybe don’t know about my invisible illness.