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Hello, I’m Abi and I live with a chronic illness…
Not the sexiest of opening lines, huh? Bit of a downer? Yeah, probably. But hey, it’s the truth. This week (11th – 17th May for those of you whose internal calendars have been obliterated by lockdown) is ME Awareness week and, amongst all of the Corona-craziness, it’s got me thinking about how I need to be more ‘out and proud’ about the fact that I, like millions of others around the world, have been forced into isolation long before Covid-19 reared its ugly head.
Now, I’m not saying this to throw some sort of pity party or to make you feel sorry for me – HELLS NO! In fact, if there is even an inkling of that within you then please feel free to exit the blog immediately. But I am doing this to raise awareness of my illness, ME (Myalgic Encephalomyelitis), and of chronic illness in general; to voice that there are people out there in the world who, just like me, choose not to be defined by their illness, are amazing at their jobs, have purpose and passion, are skilled and have something valuable to contribute to the world, BUT struggle everyday with illnesses that are largely hidden or unknown to the general populous.
This may seem like a deviation away from our usual industry and brand blogs, but if there’s one thing that we, designdough, love just as much as brand and design, it’s our team. We are allowed to be unashamedly individual here, to voice our opinions no matter how unpopular (…like that time when I told everyone that I loved that song ‘Peanut Butter Jelly’ by Galantis and was met with utter disgust), to ‘wave our freak flags high’, to be nerdy, or cool, or serious, or totally off-the-wall – it’s one of the reasons I love working here. Yet, it hasn’t been an easy ride.
Due to my illness and the shame surrounding it, I ‘coped’ (for want of a better word) with my first year at designdough with a lot of dishonesty, hiding, sick-days and generally feeling completely unworthy of my role. Unfortunately, I felt that in order to be ‘professional’ I couldn’t be myself – I wouldn’t show my vulnerabilities, flaws or weaknesses.
Five years on and I realise that that was an absolute crock and I needlessly tortured myself for ages before the Grand Fromage himself, Mr J M Brown, cut through the bullsh*t and called me on what I was doing. Together, we found a way of working with and understanding each other, as an employee and a business owner, that has evolved and strengthened over the years. I guess I just want to share a few things I/we’ve learnt, just in case it resonates with someone else out there who is struggling, but who still shows up everyday and knows deep down that they’ve got so much to give.
Honesty
There is nothing that zaps my energy more than being disingenuous or hiding the truth. The mental fatigue is relentless. My go-to used to be to act as if everything was ‘normal’, but I wasn’t only doing myself a great disservice, I was also doing the same to my teammates. Now, If I’m having a bad day, I own it. I’m not afraid to ask for allowances or help, I don’t just expect them to be given to me. Being my own advocate and being honest with how I’m feeling mentally and physically (plus learning to say no when I have to) has been one of the biggest game changers for me and is something I’m passionate about upholding. Having a bad day doesn’t make you less of a professional – don’t be afraid to own and share your vulnerabilities with others.
Education
How are people going to know what you’re going through/struggling with if you don’t tell them? How are they going to understand if you don’t teach them? I’ve always erred on the side of caution with sharing information about my illness with other people as I’ve never wanted to come across as ‘attention-seeking’ or ‘self-obsessed’…utterly ridiculous. Honestly, as long as I’m not a broken record about it and am able to hold conversation outside the realm of my disability, I’ve found that people are actually really receptive to hearing about it and how it affects me. The more we share with others about how we live and what we live with, the more acceptance and understanding grows.
Acceptance
This has been one of the hardest ones for me. In my head, I’m Wonder Woman and can take on any task given to me, it’s just that my body has other ideas. I’m the first to put my hand up to take something on and I end up chronically over-burdening myself. One of the biggest changes for me came when I accepted that I can’t do it all, and that doesn’t make me a bad person. Oh, the countless hours I’d be wracked with guilt for not being consistently productive, inspired, motivated and up for a challenge. It’s okay to have off days. It’s okay if some days your brain doesn’t work properly and you struggle to do even simple tasks. It’s okay, promise. Be kind to yourself.
Rest
I’m lucky enough to be able to work full-time and this gives me enormous satisfaction and a real sense of purpose, but this does mean that evenings and weekends are spent resting and recovering. Hobbies, socialising, and even being present as a parent for my little boy have to be put on the back-burner quite often. I struggled for so long with this, feeling guilty for having to bail on friends, leaving projects unfinished, or relying too heavily on my family for childcare, but I made the decision recently to start treating rest as a priority, instead of an annoyance that I fought against. I’m now choosing to see rest and recovery as an essential part of my wellbeing, even if it does suck not being able to join in sometimes.
No matter what you’re chronically struggling with, or what diagnosed or undiagnosed ‘invisible illness’ plagues you, whether it be ME/CFS, Fibromyalgia, Depression, Anxiety, Bipolar, MS, Crohns, Arthritis, Epilepsy, Diabetes, ADHD/ADD or Cystic Fibrosis to name only a few, I SEE YOU! You are not defined by your disability, you are strengthened by it. You are unique, you are strong and you are worthy of your space in this world. Keep on keeping on.
I am Abi. A wife, mother, designdough team-mate, studio manager, strategist, miniaturist, cat-lover and true crime mega-fan…and I also happen to have a chronic illness.
Further Reading
To find out more about ME and to help spread awareness of other chronic illnesses, please check out the following websites and resources:
This Thing They Call Recovery – Jenny McGibbon
The Surprising Truth About Chronic Illness and The Future of Work – Forbes
Millions Missing – ME Action UK