Loving your Chronically Ill Self

CW: This article discusses issues surrounding disability and mental health issues. Includes talk on body dysmorphia. The writer suffers from EDS and fibromyalgia and includes own experiences.

Body Positivity & it's Issues

It’s the well-rehearsed and mild-mannered words of unconditional affection and self-love towards your body 'flaws and all', that we have all come to know as the manifesto of the body positivity movement. Over the years it has took various forms and allowed for the exposure of a more diverse array of body types to be celebrated in the media.

But for all of its’ grand sweeping gestures and colourful optimistic messaging you’ll find pinned to the notice boards of your universities’ student union, these ideas become increasingly problematic in reality. For a significant period of time the idea of body positivity was marketed towards neurotypical white women in the western world and other genders and races were not included in the conversation.

Even now there is not enough acknowledgement of the cosmetic expectations that different cultures expect and the effect this has on mental health. The message of finding acceptance based superficial beauty standards falls flat once you start deviating from the path of typical bodies and abilities, including the experience of living with chronic illness.

As someone living with progressive health conditions, I share the same sceptical outlook towards traditional body positivity that many in the disabled community do, it is hard to love a body that feels that it no longer loves you back.

Self Acceptance and Body Neutrality

The journey to acceptance of your chronically ill self extends far beyond diagnosis. From treatments and therapies to medications and their less than favourable side effects. Your body goes through changes which you have no control over, swelling joints and atrophying muscles and the pain these illnesses cause, it is difficult to look past these increasing mounting imperfections to the person underneath, morning the body you once had and the life you used to live.

It cannot be understated the immense impact this has on your mental health and self-perception. The scarring caused by operations and my increasing need to use mobility aids in public resulted in myself become incredibly self-conscious in presenting my body, my confidence replaced by embarrassment and anxiety. The kindness needed to begin forgiving your body and moving forward towards a new semblance of normal cannot be found in the toxic body positivity presented by the mainstream media.

Thankfully, the emergence of diverse thinking and experiences has allowed for the development of a new mindset which embraces a much more forgiving outlook on self-acceptance. Known simply as ‘Body Neutrality’, it neither celebrates the body nor does it degrade it, but by simply accepting the body for what it is, emphasising respect in its ability to keep us alive.

Ari Ya writes, “Body neutrality…It does not mean we should neglect our body but rather take care of it so that we may continue to exist. It does not mean denying ourselves love of our body but rather not putting ourselves down when we have difficulty feeling it.”

My life and my body have changed, but that doesn’t mean it is no long a life worth living. No matter how I present myself, at my core I am still the same growing person I always was, and I deserve the same dignity and respect as I ever did, both from others and from myself.

A Kinder Outlook

The body neutrality movement has been praised as a much healthier approach to self-image, especially with those recovering from eating disorders and be a positive intermediary towards a more positive outlook.

While it has become clear the traditional model of the body positivity movement has become outdated, the ability to have positive body acceptance is still important, especially in the chronic illness community. Through online communities and social media, so many people are able to uplift and inspire with their bodies and their journeys.

It is a cliched phrase ‘perfection comes in all shapes and sizes’ but there is importance in being able to find a sense of familiarity in shared experiences, especially when illness can leave you feeling unrepresented in the presented image of self-love.

I believe that there is always value in cherishing your bodies' inner and outer beauty and cultivating the confidence which comes from it, but also to accept that your worth is not dependant on your appearance. An important part of accepting your illness is acknowledging there will be bad days with the good, the journey to body positivity is not a simple one, but is one that is no less important.