Is something I think all the time, and I’m the one that’s chronically ill. It’s also something I am convinced other people think when they look at me. I’m intrigued by what people, whether they know me or not, think when they see/meet/engage with me.
I’ll preface this with a note that I am aware of the classic saying “You shouldn’t be concerned with other people’s thoughts of you” but I honestly cannot help it. It plagues my mind. I am so conscious that people don’t understand this disease and the level of pain I operate in. I think it’s even worse that, often, there are limited physical symptoms. Interestingly, in a recent conversation with my mum, I admitted I would struggle to understand rheumatoid arthritis if I had no first hand experience of this autoimmune disease because there are minimal outward signs.
For example, a few weeks ago my husband finally succumbed to the viral illness that the rest of us have fought off and I was left to hold the fort. Inevitably this included a run into town to pick up more medications where I bumped into a work colleague. In the two seconds that they saw me, did my work colleague think I looked sick? What did they think of the way I carried myself or the way I walked? On this given day, I had lost my voice, looked very pale, hadn’t brushed my hair or showered in a couple of days so I think I can be assured I didn’t look glamourous by any means. I wonder, do I look sick enough? Sick enough to justify my diagnosis? Sick enough for others to understand and empathise with me?
I often feel that I have to look sick for people to understand my chronic illness or how badly I’m feeling. I believe the average person would find it very difficult to understand how much pain I am in day to day if I was dressed and groomed well. Heck, there are times when I have pottered about at home, put on make up and finally put some effort into how I look, met up with a family member and they have exclaimed how great and how I must be feeling better, despite knowing my illness well.
This is an issue the chronic illness community struggle with every day. It is hard to continuously communicate the levels of pain and discomfort we experience daily to our loved ones, colleagues and the wider community. Having an invisible illness can make this issue even worse as there are limited outward signs and makes it harder for others to understand. It’s not uncommon to be accused of “faking it”, “attention seeking behaviour” or experiencing great difficult getting a medical professional to take you seriously. Living with these experiences can increase the depression, loneliness and frustration that is often felt when living with these illnesses.
Issues that the chronic illness community may face on a daily basis include (but are not limited to); securing a disabled spot on the train, communicating their needs, personal grooming, gaining help with a household task, feeling comfortable to use a blue badge. I’m sure if you’re a chronic illness warrior you can relate to some of these, or even some of your own come to mind.
I don’t have many answers on this subject as I’m still new at navigating this disease (you can read about my diagnosis here), but what I would say is this.
1. I have found incredible solace in the online community, mostly on Instagram. It is great to see and interact with other people who completely “get it” because it makes you feel less alone.
2. I believe it is vital that we continue to communicate our needs to our loved ones, work colleagues and the wider community and we must fight together to be heard and understood. I think it takes time to learn how to advocate for yourself and even longer to feel confident in doing it, not to mention how exhausting it can be.
3. I am only just learning the importance of making myself more presentable to the world. It makes me feel better about myself and I have more self-esteem on those days. I’m also becoming ready to fight that while I may look “normal”, it does not negate from what I am experiencing in my body. Being a mum of two toddlers it is often hard to achieve anything more than throwing on the first clothes I find and chucking my hair into a “mum bun”.
However, I am determined to do this for myself. For that reason I have set myself a challenge of dressing through the colours of the rainbow starting on Monday 27th and I’ll be posting on Instagram. Feel free to follow along and tag me in your rainbow outfits too!
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