© Illustration by INJECTION - George Bamford
"Share Your Story" submitted by Chelsea, 21 years old, UK
Taking off my mask for the world to see.
I have lived with a chronic illness for eight years. I have Lupus, an autoimmune condition that affects me every single day - my fatigue levels, concentration levels, joint and muscle pain, hair loss, eye irritation, sun sensitivity, chronic pain and so much more. As an invisible illness, practically all my symptoms are not visible to the naked eye - I ‘look healthy’ from the outside, where if you just based me on appearance, I would look normal with no problems at all. The truth is, living with a chronic illness is exhausting. Not just because I am drowned in fatigue, but because of the underlying mental frustration I have to deal with all the time. Whilst the NHS are doing the best they can, it doesn’t make it easier for me to have to go through repeated hospital appointments, failures from professionals, medical gaslighting, medical trauma and medical burnout. It doesn’t make it easier for me to be in constant pain, this never-ending suffering which I hide behind the invisibility of my illness. And it's isolating.
I live every day as best as I can in a positive light, trying my best to be happy and live my life to the fullest potential. I smile a lot, I laugh a lot, I have fun a lot. But the thing is, sometimes it is fake. I radiate positivity because if I don’t, my health (both mental and physical) will deteriorate. They come hand-in-hand, and if I think negative thoughts, I will just feel more down than I already am, and who wants that? Not me, because every single day I am wearing a mask in front of you, to hide how I am really feeling. I’m just not very good at projecting these horrible inner emotions. I asked my closest friends how they view me. They tell me I’m empathetic, organised, busy, dedicated, happy, resilient, positive, strong, smart, funny, always cares about people, hard-working, outgoing, a passionate powerhouse who is sweet and understanding. I am surprised to hear such kind and uplifting words, as many of them I wouldn’t consider myself to be. Perhaps it is the toxicity talking, but during this rough patch, all I can see are the negatives, what I’ve not been able to achieve. It is easier to criticise yourself than to reward yourself for your accomplishments. So whilst this is my outward appearance, it shows none of my layers, a mask which I have used as a cover since a very young age to escape from all the suffering.
Let me uncover my mask for you.
I will tell you inside in how I really feel, the side of me I never wish anyone to see but have chosen to expose. With absolutely no exaggeration, a normalised day for me is to be both mentally and physically exhausted every minute of every day. You probably won’t believe me, but it is true - I do not remember the last time I had a pain-free, energetic day. I hardly remember what it is like to live illnessfree, where my entire childhood is a blur and memories have been replaced with repeated hospital visits for blood tests and infusions, the pain of surgeries and the tiring process of being seen. Every decision I now make has to factor in the fact I am chronically ill. I wake up every day to consider how many spoons I have (which I explained about in a previous article, called the Spoon Theory) and then make a choice of how I want to spend my time based on my energy levels. My illness prohibits me from doing the best I can, because it’s the biggest obstacle I cannot always overcome. I have never escaped brainfog - a phenomenon in which I have problems with memory, have trouble concentrating and get confused extremely easily. I’m slow, or perhaps you think I’m dumb, but I literally cannot help it.
When my mind slips for a moment, the worst parts of my brain overrides all the amazing parts, reminding me that beneath the surface, I’m constantly having a tough time. I start to wonder, what would life be like without having this loom over me all the time? How different would my life be if I had the same opportunities as my abled counterparts, the same energy, the same abilities? Would I be able to live in Hong Kong as I always dreamed of? Would I be able to tick off everything on my bucket list and write my book, create my own magazine, establish my own business, start my own stationery brand, own a charity? Am I even allowed to be ambitious if I am aware of all that prevents me from achieving my life goals?
I start to ponder what the point is, when nothing I do to make myself ‘better’, matters. When all I seem to be doing is surviving, barely getting through it, whilst juggling everything in my life to ensure I’m not a failure. After being diagnosed, I created high (or relenting) expectations for myself, to ensure I’m not defeated by something so ‘stupid’, to be able to overcome it and fight. I strive to do everything I can, with so much force, so much energy, so much ambition just to prove I’m worthy of life, worthy of happiness, worthy of healing. I like to think I am just being overly-ambitious, but perhaps I need to be more realistic. I try so desperately every day to get out of bed, live to my fullest potential and make myself better. But with Lupus, I’m rarely at baseline - a term in which all the symptoms are still there, but just not as bad. Instead, I always seem to be jumping from flare-up to flare-up.
So I ask myself, what did I do to deserve all this? For the longest time, I always believed I had all these health implications because I deserved it. I felt I was being tested, being punished, was chosen to live a life in constant suffering. It is normal for people with chronic illnesses and/or disabilities to ask the ‘why me’ question’, to wonder the ‘what if’s’ of what could have been. Was it something in my past life, a recent action which was so bad I had to be punished? Was this illness a result of karma? It’s hard not to want to imagine what it would be like to live with endless life, but unfortunately I can’t even imagine what life is like without the constant agony I feel all the time. So instead, I constantly wonder when it will get easier. Because when does it get easier? Sometimes I wonder if I will ever find out.
Whilst I am living, I am in constant pain and I am constantly tired - this is the mask of the invisible illness you don’t see. You don’t see the suffering as I don’t want you to see my vulnerability. One time, my mum blamed herself for all the health implications I have, telling me how it was her fault and I didn’t deserve any of this. Knowing my mum felt this way changed my entire mindset - I will never make her feel like this ever again. So I’ve brought myself up to be tough, I don’t shed tears and I don’t make a big deal out of nothing. With the life I lead, having been traumatised at such a young age, little things are not worth being angry and/or upset about. I’ve normalised the feeling within my body for years, where I have learned to ‘suck it up’, ‘deal with it’ and just ‘move on’. These are the types of pep talks I give myself because otherwise, other people will see the real me, the person who is always suffering. The person who is always having a tough time, where I continue to give myself a hard time because I always have to do more, try harder, be better. I choose to bottle up my harsh feelings than share them with the world and use them as a motivator, pressure to be more than my illness(es). I like to stay busy, but is it because I like to keep busy, or am I just wanting to escape my own inner turmoil? I choose to escape and carry this burden myself as to not worry others, to not let them in and to not let them feel my endless pain.
I feel like an inconvenience when I talk about my illness. It’s a difficult topic because many people find it uncomfortable to have these kinds of conversations. At times, it may be easier to just shut myself away from the world to avoid making other peoples’ lives harder. I have normalised answering peoples’ ‘How are you’ question with “I’m good, how are you?” as a reflex whether or not I am actually feeling good. Firstly, I just care about how other people feel more about expressing my own feelings, but it is just easier for me to say “I’m good” so I don’t seem like I’m always having a tough time, even though that is my reality. It got to the point some of my friends have to repeat the question with "but seriously, how are you really doing?"It is easier for me to say that to keep the mood of the room positive, as to not dwell in my pain and to not be a buzzkill. It is easier for me to say that because it makes things simpler and allows other people to skip the difficult conversation of what I go through all the time. It is so normal to me to say that, I’ve even said that to doctors, knowing fair well it is far from the truth. I then have to correct myself with ‘actually…’ before explaining what I’m really feeling, which is hard enough as it is for me. I’ve been told by many doctors that what I consider low pain would actually be insufferable to others. One time in particular, when having my eyes checked, I was told my eyes were so dry that it would burn for some people to the point they wouldn’t manage their day. This kind of pain is normal for me. With having gone through so much both mentally and physically for so many years, my pain tolerance has sky-rocketed, it's extremely high and I am used to it.
So it is tough to have these conversations with certain people, not only because of my own challenge to express these emotions, but because they can’t fathom what it could be like and they don’t want to. It’s too serious, too sad, too strenuous. After leaving a conversation that is demanding as the topic of chronic illness and disability, you get to walk away. But imagine how onerous it is for me to continuously live with the burden I bear? I feel isolated during these times because not many people understand the harsh truth. I’ve met some wonderful people who, although will never fully understand, are so incredibly supportive and I could never thank them enough for always being there for me. I’ve met people who are unfortunate enough to be in the same position - always fearing new diagnoses, living a life going in and out of hospital and never leaving the unknown. This is the reality of having a chronic illness, it never goes away. I never know when these days will come, but they never fail to make an appearance. But actually, I experience this every day - I just choose when to show it.
I rarely choose to show how I am really feeling because I’m betraying the persona I created for the world to see. The imposter syndrome of who I actually am, because I’ve lived like this for so long I sometimes struggle to figure out what is true and what is not. Who is this person the world sees? The one I aspire to be - the lively, ambitious, outgoing character who roams the world freely, completely separate from the bottled in pain that lives underneath, pushed down to the bottom so it reaches the surface only once in a blue moon. The character I aspire to be wins the majority of the time, I do believe I am her and I like being that person who is supportive, empathetic and caring towards other people. The side that feeds on drowning out the negativity which is subconsciously always there. But perhaps I am both, perhaps they are not as separate like Jekyll and Hyde. Lupus isn't going anywhere - it may not define me, but it will always be one piece of me. So maybe I should embrace all parts of me, even this layer.
One thing that brings me joy from all this is my love for writing. I’ve loved writing since I was young and writing articles about chronic illness specifically, although seems contradictory, is extremely therapeutic. A way I can release my frustrations, better explain my thoughts and have an outlet for how I really feel - something I struggle expressing in real life. With my platform, I’m able to advocate for myself, something I find extremely rewarding. I have no idea who listens, who reads, or takes the time to educate themselves through me, but it is enough because I do it for myself. Behind the screen is always easier, I don’t have to worry about peoples’ reactions, their emotions, their responses. Writing all this is like opening my entire soul for the world to finally see me. The blue moon has arrived and I’m unleashing the toxins of what I’m feeling, I’m uncovering the mask in which I wear every day and I’m retiring it away for a while. I choose to be vulnerable, to learn none of this is my fault and understand the people who want to be around me wants to because they care, support and love me whether or not I am ill, whether or not I am positive, whether or not I am my version of success. I need to be able to express all my elements, uncover my mask and allow myself to live as all parts of me.
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