Grieving Your Career Dreams, Independence and Freedom
WHY I AM STARTING THIS BLOG
This is the beginning of a blog I never wanted to write - but one I know someone, somewhere, desperately needs. If you are ambitious, creative and living in a body that feels like a battlefield, this space is for you. These blogs are going to be very honest and raw. I want to take you along my journey - though chronic illness, medical gaslighting, creative purpose and the fight to live, not just survive.
A realisation hit yesterday, whilst I was yet again in an ambulance on my way to hospital. Since getting chronically ill five years ago, I have tried to rebuild my life countless times. Each time it looks like I am getting better and I get excited to create future plans, I end up in hospital again.
I have been receiving so many messages since I started opening up on my Instagram about my life as a freelance illustrator with multiple chronic illnesses. These messages of support, made me realise how my work as an illustrator and sharing my story can inspire others to continue going through their challenges and be a form of motivation to continue fighting to do the things you love.
I realised, if it is still going to be a long journey to get back to living, I want to at least be there for other people also struggling. To take you through what is happening, to support others and be a voice for people who aren’t being heard.
As my condition has been getting worse, I have found a craving for writing. My body is craving a way of sharing my story, of fighting back and getting my voice heard.
This is the first blog to let you know my current situation and to take you along my journey. I hope to create a space I wish was there for me when I started my diagnosis journey five years ago. I don’t want to let my chronic conditions control my life, so every step, whether small, is a step in the right direction to creating a life where I am truly living.
Before I get into the main story, I want to say a thank you to everyone who has been there along the way. When going through something like this, I am so grateful to have loved ones around me who continue to try and help, find solutions and support me. You will read below that I have not had the best experience with medical professionals. However, I do want to say a thank you to the special ones who have listened, respected me, realised the severity of my conditions and tried everything to help.
INTRODUCTION INTO WHO I AM
For any of you who are new to my work, I thought I would give a quick introduction.
Hi, my name is Alice Mawdsley and I am a full-time freelance, travelling illustrator. I specialise in reportage illustration, which is this cross-over between journalism and art - drawing on location, interviewing, filming and writing. I have an art studio in Hackney, London, but for the last two years I have been spending a lot of my time living abroad. Which, although it can be extremely challenging as someone living with many chronic conditions, travelling is my way of trying to create a life I want to live. These experiences where I continue learning, connecting with others and seeing new perspectives of the world around me, motivate me to continue fighting through my conditions and seeing the beauty in everyday life. I hope to also inspire others to continue doing the things they love, no matter their challenges and to never let their conditions define them.
My illustrations explore different cultures, everyday life and food. You will usually find me with my sketchbook, drawing on location, capturing the world around me - celebrating community and the similarities that connect us all.
I studied BA Illustration at Falmouth University in Cornwall, UK. Since graduating I have had work in the World Illustration Awards and have worked with charities and global clients on advertising, editorial, clothing, product illustration and publishing. My time is currently split between writing and illustrating an upcoming book, teaching illustration, client work and content creation.
The most fulfilling projects I have done are reportage focussed. A favorite of mine was a six-month project with Syrian refugee families in Cornwall, sharing the stories, journeys and everyday life of the children. The illustrations enabled their voices to be heard while raising money for the charity.
WHAT IS MCAS, POTS, HMS & GASTROPARESIS?
As mentioned, I live with many chronic conditions. After five years going between hospitals in different countries, having hundreds of blood tests, MRI scans, endoscopies, biopsies, operations etc, I have finally been diagnosed with MCAS, POTS, HMS, gastroparesis and PCOS. Though, even after getting a diagnosis for all of these conditions, my symptoms are still mysterious to the medical industry in their severity - such as having a week of seizures and full-body spasms lasting 8 hours each episode, loosing all feeling in the left-side of my body, and anaphylactic attacks everyday at the moment. So I am taking you on my journey to hopefully find the answers to what is happening and to get back to creating and doing the things that bring me joy.
MCAS (Mast Cell Activation Syndrome):
This is a condition where your mast cells (which are part of your immune system) overreact to things that shouldn’t be a threat—like food, heat, smells, cleaning products, sprays, or dust. When they flare up, they release chemicals like histamine, causing reactions like throat swelling, skin rashes, stomach problems, breathing difficulties, or even anaphylaxis. It can be unpredictable, flare up in minutes and very serious. As you can't control everything in your surroundings, this is one of the hardest conditions to deal with.
I am on a low histamine diet, if you search it up you will see how difficult this is. From both limiting the food you can eat to how you cook it, store it and the seasoning you can use. It means you can't eat out, eat leftovers or bring a packed lunch with you as everything has to be fresh. Yes it can be extremely boring eating the same thing every day, very isolating and tiring, but if it means I can get through the day with less pain, then I will take it.
POTS (Postural Orthostatic Tachycardia Syndrome):
POTS affects your autonomic nervous system—specifically, how your body regulates things like heart rate, blood pressure, and circulation. When you stand up, your heart can race, and blood doesn’t flow properly to your brain. This can cause dizziness, fainting, nausea, fatigue, and a “foggy” head. For this you have to have a lot of salt for electrolytes, try and control your temperature, take medication, wear compression leggings and drink a lot of water all the time to try and make everyday things more manageable.
HMS (Hypermobility Spectrum Disorder):
This condition affects your joints and connective tissue. It means your body is extra flexible, but not always in a good way. Joints can be unstable, painful, and prone to injury. It can also cause fatigue, muscle pain, and coordination issues—basically, your body works harder just to do everyday things.
Every time you crack a joint (as mine crack every time I move them) it releases histamine which in turn flares up my MCAS. So it is a constant attack cycle.
GASTROPARESIS
Gastroparesis is a chronic condition affecting your stomach nerves and muscles. It means your body can’t move food through the digestive system as it should. It is also called stomach paralysis. This causes pain, nausea, vomitting and makes it incredibly hard to eat and absorb nutrients. It massively limits your diet and at times of flare ups, it can leave you only able to have liquids, as these are easier to digest.
MY CURRENT REALITY
Today is the third day in the row that as soon as I wake up and open my eyes, my body has gone into an anaphylactic attack from my environment. Yesterday I was alone when the attack happened and I had to phone 999 again to be taken to hospital.
This morning, I was struggling through another attack. For a little insight into what a serious anaphylactic MCAS flare up consists of: throat closure, struggling to swallow and breathe, difficulty to stand up, swelling of the tongue, mouth drying up, rashes appearing across the neck, bouts of awful stomach issues and potentially going unconscious.
Whilst going through the starting stages of these symptoms you immediately have to take your medication. Sadly for me, I am still on the hunt to get support and find the right level of medication to control the severity of my MCAS. After taking the maximum dosage of anti-histamines and my other usual medication for my POTS and lung inflammation, I just had to sit there and try and calm my body down. I thought, let’s try and get ready. This will distract myself and mean at least I am changed incase I have to phone the ambulance again.
I stood up, trying to breathe as deeply and slowly as I could, feeling my legs struggling to keep my weight up. Feeling my tongue swelling up and my throat tightening as I started to cough up mucus. I know it’s not a lovely image, but this is my reality.
At this point, in a panic by myself, you have to know what decision to make. Anaphylactic attacks are life-threatening, but I live with a chronic condition which is unknown to most doctors and the medication prescribed to the usual patient sets my MCAS off again. I have to decide whether to try and hope the anti-histamines are going to finally kick in, as I have taken above the recommended dosage; or whether to phone the ambulance. Yes, you do need to phone 999 when it gets extremely bad. But I have been taken to hospital, struggling to breathe, in seizures, with heart palpitations and collapsing, and have been left to wait for six hours to just get a blood test and be told they don’t know how to help me. So, when I am faced with these episodes, that can be multiple times a day, it is scary. Scary to know that the people who should be there to help can’t seem to find a solution.
MCAS is a very misunderstood life-threatening condition. There isn’t enough medical research out there. Doctors are not taught about these kind of conditions, so they don’t always believe you or understand what you are talking about. The only places I am realising I can seek support is through private specialists - though this gets incredibly expensive, there are only two available in London and I am still waiting for the right specialist to fit the pieces of the puzzle together.
LIVING IN A BODY YOU ARE SCARED TO EXIST IN
It’s scary everyday knowing that when I have allergic attacks, that the people that should be there to help, to save lives, don’t know what is happening. The teams tell me to phone every time I start struggling to breathe, but this is everyday. My life isn’t living at the moment. I am just here surviving. Surviving to then wake up again to an immediate attack. To survive to not be able to walk to places, to eat food, to be able to breathe. I am constantly in search for a place I can breathe. It scares me to think no where is safe for my body.
In a world where we are continuing to increase infrastructure, transport, heat, artificial chemicals and pollution; it worries me that my body will never be safe. My MCAS flares up from heat, temperature changes, pollution, dust, wind, mould, perfumes, sprays, cleaning supplies, artificial lighting, loud noises, busy areas, movement, food with histamine in and air conditioning - one of my biggest killers I realised, as it releases dusty air into the room and left me in spasms and seizures for a week.
I have been crying and trying to get help from the people who are meant to be there for me. Instead I have often not been listened to over the last five years. I have not been given the right support and have been ignored. I have been made to feel as though I am making everything up. I have been given responses such as: it’s because you are a woman. It’s because you are young. You are just stressed. You have yellow skin because you eat carrots. It’s all in your head. You must have an eating disorder, which is why you can’t eat food. Have you tried therapy? Have you tried to breathe deeply? Have you tried to go for a run?
From my own experiences, and having spoken to people working in the medical sector, I have come to understand the lack of support for young people with chronic conditions. How their stories and health aren’t being taken seriously. There is so much further we have to go for developing and supporting people; especially for those like me with rare conditions that are life-threatening.
I have been so mistreated by the system that it makes you think you are going crazy. This is why I am so passionate about what I do. I am so passionate to create a life that is worth living. Create a life full of illustration, full of exploring the world, full of connecting with others. Reportage illustration is a way for me to connect with other people across cultures, share their stories and highlight the amazing work other people are doing - such as refugee charities, food kitchens or local businesses.
I want to push into public speaking and more written work to support other people, like me, with chronic conditions that are misunderstood. Who don’t have a voice and need their stories heard. Who need that support and inspiration from someone to show them they can still live. They can still do the things they love. I would never want anyone to feel defined by their conditions. I am fighting everyday to keep on seeing the beauty in life.
Drawing on location forces me to sit down, observe and be present in the moment. Distracting me from the chaos and challenges of my life. Forcing me to see those beautiful moments that we miss in the world around us. As I draw these smaller moments, it fuels me with that motivation to keep on seeing the positivity - sharing this with others to help them fit through their own battles and see the power in art.
I don’t just want to advocate for art. I want to be a voice for people with chronic illnesses to say there has to be a change in the system. It is ridiculous that I have to pay hundreds and hundreds and hundreds, to try and get medication, health care and food I can eat, just so that I can breathe and be here. Be here for what? Be here to still struggle everyday to breathe. Scared about how long I have until my next flare up. Scared that a little bit of dust, or the wrong food, or a change in temperature will send me to hospital again.
You can’t live a life of constant fear. This is why I am so determined to get back out there, find a solution and help others. Knowing I am helping others, even when I am going through so much, gives me that fire to continue going. To see the smile on someone else’s face. To hear the messages I get on my social media saying I am inspiring. To see the reactions of people when I show them my illustrations of their stories. It is beautiful how art connects and changes our perspective. If my work helps in some way, and makes a positive difference to inspire another person to keep on going, brings joy into someone’s life or allows a persons’s voice to be heard; then I’ve won. That is my fire and motivation to continue fighting.
GRIEVING YOUR LIFE
Something that has been heavy on me recently is the feeling of grief. A lack of control. The feeling of being powerless.
Of course fear, exhaustion and loneliness are often present in my life, as I hope that it will someday get better. But besides this, this feeling of grieving a normal life is massive.
I am a very ambitious person with big dreams and aspirations. I run my own illustration business and I have endless plans for next step and how I want to expand it. Yet every time my businesses is going well and my health is good for a week or two, it gets set off again and I’m back in hospital. The last five months have been extremely challenging. I’ve been watching myself get weaker and weaker. It is so difficult to watch those around you living a normal life, achieving their goals and feeling successful and happy.
For me, I have to be grateful for the tinniest things - such as being able to breathe a bit easier, managing to walk up stairs without having heart palpitations, managing to eat something without immediately flaring up.
It is a luxury to walk. It is a luxury to eat any food. It is a luxury to breathe. Now, for the average person, these all seem like everyday simple things you don’t even think about. But for me, these are things I am craving so badly.
Of course I am supportive and happy to hear and see other people succeeding with their goals. I just want the people I love to be happy. But I can’t help but feel more helpless, trapped in a body that hates the world around me. Trapped in a body I can’t control. Trapped in a body that I am scared to live in.
Having gone from doing competitive gymnastics, always being sporty and going non-stop, to now struggling to do everyday tasks and unconscious activities, really takes a toll. You have to be extremely strong to keep on fighting. It is hard to see other people building plans whilst all my energy is in to not dying. Yes, this may seem very negative, but it is the honesty that has hit recently. The reality I have seen as I have allowed myself to sit down and reflect on everything. To stop going full-speed as a distraction from the reality I am in.
The thing that hurts so much at the moment is the grieving.
Grieving my career dreams and creative ambitions
Grieving my old body that could move without pain, breathe and eat food
Grieving my independence - the ability to plan, work, travel
Grieving the freedom to be ordinary - to have an average, unforgettable day
Grieving the feeling of being left behind, again and again
Seeing the world continue going on around me stings. It reminds me of who I was, who I could be and who I am now. It hurts to watch your body getting weaker as you are at a point in your life that is meant to be your ‘best years’. It’s a psychological war zone.
I have so much fire in me to get back to living and helping others. To be able to walk, to breathe, to be back doing the things I love. To be able to be illustrating, exploring and experiencing the world. To be living. Not just surviving.
This is more of a reflection article, as I am sat in the hospital waiting for my appointment to speak to another specialist. I hope it will give me more answers and lead me to finding medication that can help me. This blog is my way of saying: I’m not giving up - and I won’t let this story end in silence.
If you are reading this and feeling like your life is on pause - you’re seen, you’re valid and you belong in this space too.
You can follow along my journey on this space I am creating on my website. If you have any of your own questions, topics you would like me to discuss, you own stories or thoughts on what I have written, then please send me an email: alicecm.mawdsley@gmail.com , or an Instagram message: @alicemawdsleyillustrates.
Sending my best wishes.
Alice x