For a long time, I’ve been noticing that there are many outlets for writers with chronic illness but comparatively few for artists with chronic illness. I decided to create these “Spoonie Guest Artist” posts, featuring some of the super-talented visual and multimedia artists I’ve met since I started blogging. I found Alexandra on Instagram (she’s @yourachingart_m.e). I immediately started following her because her work is creative, relatable, funny, lovely, and comforting. She’s also an excellent writer; I admit I teared up reading parts of this. Check out her story and artwork.
Hello! My name is Alexandra Baker and I’m based in the beautiful but often rainy North Yorkshire, UK. Art and creativity have been a huge part of my life for as long as I can remember. As a child, I would sit quietly and draw while everyone else played in the mud and made friends. I dreamed about creating artistic masterpieces that would one day be placed in a museum, making me super-rich and famous. Of course, that wasn’t meant to be, but my passion for art and design stayed with me even through my darkest moments. Art became my way to express my inner feelings and share my experiences living with a chronic illness.
I worked ridiculously hard for more than four years to increase my art and design skills, finally earning my degree in graphic design. Everything was neatly planned out in my mind. Having this degree would provide me with a career to be proud of and the life I’d always wanted. My dream almost came true when I was offered a small graphic design job in a local company that (strange coincidence) specialized in medical and health-related topics. This was before disaster struck in the form of my own medical nightmare, myalgic encephalomyelitis (ME/CFS).
I developed ME around 4 years ago. It happened in what felt like the blink of an eye, without warning. I woke up one Monday morning, started to get ready for work, and fainted. When I came to I felt a deeply embedded sensation of illness, unlike anything I’ve ever known. The feeling has stayed with me ever since. After a year of research and endless appointments, I finally got the diagnosis of ME (although this diagnosis raised many more questions than provided answers).
At first, my illness completely stopped me from being creative. A mixture of depression, being bedbound, and fighting for a single ounce of energy prevented me from even thinking about my art or my future. Art was no longer important to me. Surviving each day was now my main priority. After slowly coming to the realisation that this illness was a chronic condition and I needed to change my life, I started coming up with ideas about how to use my artistic skills to raise awareness for ME. I now spend most of my time sitting quietly, creating artwork or graphics relating to chronic illness.
Being mostly housebound and unable to work meant that I desperately wanted something to keep my mind active and feel that sense of achievement and purpose which ME will gladly steal away. The idea of making chronic illness art came from discovering a whole online community of likeminded people, specifically on Instagram. These people were going through the exact same hardships as I was. They made me smile and know I was not alone in my struggle. I wished to do the same for others, and I had one key talent at my disposal. I mixed the two most dominant parts of my life, art and illness, and the rest was history.
Art has definitely helped me cope with my illness. Not only do I enjoy making it, but it also opened up a whole new world and a community of people I never knew existed. I see what others with ME and other chronic illnesses go through. You don’t really ‘get it’ until you ‘get it’. Now that I’m part of this hidden world, my aim is to carry on raising much-needed awareness and provide people with a reason to smile and feel supported. Through my own experiences and my own awkward personality, I hope to inspire others to understand that it’s okay to not be okay — to understand that it all sucks, and I know it sucks, but there’s still some hope to be found.
With a chronic illness like ME, even existing is tough. So making artwork is ridiculously tough. That’s why I push myself every day to try and make something. It’s a small amount of accomplishment for me and a small amount of reassurance and support for others. Some days it’s impossible to create, impossible to do just about anything other than breathe and wait. Brain fog doesn’t help matters either. I often get frustrated and upset when all these creative ideas are swirling inside my mind but my body physically cannot do it. Many days my body is far too fatigued to keep my arms moving or be seated upright for any length of time. Digital art is much easier for me than picking up a pencil or paintbrush; painting the natural way requires far too much energy. Making art helps distract me from my illness. When I’m fully focused on the screen my body can’t get as much attention. Art can take me out of my own reality; like watching a movie, it can take me away from it all. Not being able to create is heartbreaking for someone like me.
Right now my priority in life is to keep things as calm and stable as possible. As in, being- out-in-the-open-sea-in-the-middle-of-a-storm-but-at-least-you-have-armbands stable. I’m just incredibly thankful that despite the horrific nature of ME and the many challenges I face daily, I can still find something within me to keep on creating and coming up with new projects and ideas. I’m proud of myself for never fully losing that huge part of who I am. ME has put many obstacles in my way, but I’m using my skills and devoting my artwork to help fight for recognition and fair treatment of other ME sufferers. Art allows me to speak and be heard through all the chaos, and I’ll carry on doing this forever if I have to. My future is very uncertain at this point and nothing like the dream I once had as a child. But as long as I can use my creativity to make a small difference then that’s all I could ever wish for (that and a small loan of a million dollars)! 😀 I’m sending love and spoons to all who read this.
Alexandra’s Tips for Creating Art with Chronic Illness:
- Don’t worry about doing something amazing. Any form of creativity or coming up with ideas can help distract you from illness, give you enjoyment, and satisfy your inner critic. You can do anything as long as you enjoy the process of creating it. Think of different types of creative activities that might satisfy you, such as poetry, crafts, humor, making videos, baking, making cards, writing songs, etc.
- Never let your work take away from self-care — your health is most important. Always take your time and take breaks. If you’re making art on a computer, be careful about your posture.
- Find tools that help you — for example, you can buy tables that you can draw on when you’re lying in bed.
- Pick something you truly enjoy, something that you would willingly use up a few spoons for.
Find Alexandra Online:
Are you an artist with invisible or visible disabilities and would you like to be part of the series? Please send me a note in my contacts form if you would like to participate. All types of art are welcome: drawing, painting, crafts, video creation, etc.
Wishing everyone a low-symptoms day! 💚