Chelsea was diagnosed with Lupus at 14 years old and although this is considered a disability, she often feels she doesn't belong in the disabled community. She writes about having imposter syndrome and how it makes her feel.
I was diagnosed with Lupus when I was 14 years old, eight years ago. Under the Equality Act 2010, that means I am considered disabled. But often, when I think about myself as being under this category, I feel like I don’t belong there—I start to wonder, am I disabled enough to be here?
When I was first diagnosed, I was extremely stubborn. I refused to believe Lupus was actually going to hinder my daily living and denied accommodations my school offered me to help with my very first set of exams. I was quickly proven wrong—my hand started hurting after writing half a page and I lost my ability to concentrate for long periods. I found difficulty in understanding questions and had to reread it multiple times before understanding it which lost me valuable time. I quickly had to pivot my thinking and accept these accommodations. Without them I would have failed every exam and by doing so, I wouldn’t be giving myself the best chance to do as well as my peers. Lesson learned, and ever since, I’ve had accommodations put in place: I could use a laptop/computer instead of handwriting an exam, I had extra time (15 minutes for every hour I sat) and could take rest breaks to help with thought processing.
I’m still not very good at accepting accommodations. I’ve always had very high expectations for myself, I’m a perfectionist and I like being independent. Asking for help doesn’t exactly come easy for me. Last month, for the first time ever, I asked for help at an airport. I had to work up the courage to do this. I have never booked extra help like this before, mostly because I have an invisible illness and feared judgement—every inch of my body was telling me to push through to avoid people telling me “I wasn’t ill” or refusing to give me the help I was entitled to. And I felt guilty. I felt guilty for asking an employee if it was possible for me to go through fast track because I have an autoimmune condition that makes it difficult for me to stand and walk for long periods. I felt I was lying. But I wasn’t. The truth is, I do have an autoimmune condition. I do get tired when standing and walking for long periods. So why is it that I feel like this?
I have imposter syndrome.
When I compare myself to others I know who live with a disability, I don’t believe I am disabled enough to be worthy of this level of support. I know I shouldn’t compare, but sometimes I can’t help it—it makes me doubt my symptoms, maybe even internally gaslight myself.
As part of the community, I see many people advocating for disability and rare disease. Some talk about things I can’t relate to, like being unable to attend university due to their condition. But I was able to. I not only attended university, but I graduated, with a first-class degree. I was able to volunteer for a charity and non-profit, have a writing internship and be on the committee for three different societies just in my final year of university, all whilst juggling a dissertation and my actual degree. And you’re telling me I’m disabled and have the right to ask for help?
Lupus, for the most part, is an invisible illness. Unless my skin has flared-up, on a normal day, you wouldn’t know anything was wrong with me. I look ‘normal’, I’m a go getter and I’m young living my best life—or at least to the outside world. But the truth is, every day, my body attacks healthy tissues and organs. I suffer from several symptoms you can’t see, such as extreme fatigue, eye infections, lack of concentration and focus, sun-sensitivity, and muscle, joint and chest pain. It means it takes a lot longer for me to understand something and concentrate whilst having a conversation. It means I can’t be in the sun for prolonged periods or walk or exercise for a long time. To achieve the same things as able-bodied people, I would need to put a lot more effort and attention and still might not come close to doing what they are capable of.
Everyone who knows me to a degree knows I love being proactive. Sometimes I wonder if that’s because as much as I love doing all the things I do, it is also a way to prove to myself (and others) what I’m capable of despite my disability. Don’t get me wrong, I get extremely tired after doing all these activities, but I also thoroughly enjoy doing them. But because I am technically able, it makes it difficult in a society which has a depiction of what being disabled looks like, which I don’t always fit. You see me running around doing things all the time, going for brunch with my friend, shopping with another in the afternoon and then going out in the evening for drinks. During university, I’ve even done week benders before and been ‘able’ to do things during the day before the next night out starts. But the other ‘me’ is also struggling to wake up in the morning and struggling to ask my friends to walk a bit slower.
For the most part, I don’t really relate to people who aren’t disabled. To be able to live a life, waking up every day without taking medication, managing energy levels or suffering the symptoms I do—that is only a dream for me.
I’ve always said I’m part of the rare disease community, so it still fascinates me now as to why sometimes I don’t feel I belong. It is still extremely frustrating for me to ask for help and support without seeing myself as a failure or the act as a sign of weakness—I hope it is something I learn to do someday without feeling guilty, annoyed, or ashamed. But I do know that being part of this community is absolutely wonderful. Everyone is so empathetic and due to us all going through similar struggles and understanding some disabilities are not visible to the naked eye, it makes me feel I can belong. I must remember, there is a place for me in the disabled community—it's an inclusive community and anyone living with a disability is welcome, even if sometimes I forget that.
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Instagram @_chelseawong_ @thechelseainfusion
LinkedIn @chelsea-wongg