Advocacy, Happiness and Guilt

When you have a chronic illness that is widely misunderstood and steeped in decades of stigma and disbelief from doctors and the wider public, it means that so much of your time and energy is spent advocating for yourself and your community. Life can be a constant battle to be believed and taken seriously by those around you, as well as the doctors who are supposed to help you.

So, many of us take to social media to try to educate people and remove some of the stigma, in the hopes that it will at least contribute to improving the lives of sick and disabled people. We want to be understood, and heard. But being constantly met with doubt or disbelief can also lead us (or at least, me) to feel the need to be always advocating and proving the severity of our illness and our symptoms. I find that any time I want to share something nice or fun, I feel I have to add caveats and disclaimers so people know the cost of it - the accommodations that were needed and the payback I suffered as a result, lest I be labelled a faker. And while I do think that if we occupy a platform in which we advocate for a patient community we have a responsibility not to misrepresent that illness, it can also be really tiring to have to explain yourself all the time.

The other day my pal Anna of Tea Party for M.E created a set of slides offering advice on how to manage life with M.E. It was a lovely post I thought. It was carefully and sensitively considered, with the understanding that no two people experience the disease in the same way. There was one slide in particular that really struck me though, and it said this: “Be assured that while life will be different and hard, it can still be good.” It struck me because I realised that as sick/disabled people we are so often forced into a position of constantly having to fight. Fight for our rights, our access to employment, appropriate healthcare and social support or even just to be listened to or taken seriously. It’s exhausting and often leaves little room for celebrating fun and joy.

Something I always try to bear in mind when using my social media platform to advocate is that I, although really bloody sick, am very privileged. I can still get up and move around my house. I could (pre plague) get out for fresh air or manage the occasional visit with a pal or drive out to eat chips and mushy peas at the seaside. I have relative financial security, secure housing and a reliable support network. I want people, especially doctors, to know that people with the more severe form of this and other similar chronic conditions, can often not even leave their beds or tolerate any light, touch or sound. Many have no support, no care and are driven into poverty. So many have lived this way for decades where as I, now 5 years in, am a relative newbie. I often worry that people will see me as a representation of M.E or chronic illness as a whole, and that is so not the case. Although I am very sick and very limited, I am actually one of the luckier ones and I think it’s very important when having any conversations around sickness or disability, to acknowledge how privilege affects and determines our experiences. My experience is not representative of sickness and disability as a whole.

Suffice to say that all of this can lead to a reluctance to share the elements of my life that are happy and fun. I worry that by sharing these lighter moments, it will negatively impact the fight to be taken seriously or undermine the severity of the condition. I think it’s important to know how debilitating illnesses like this are and how many structural and systemic barriers people face. But then Anna’s post got me thinking that maybe it would be nice, especially for newly diagnosed folk, to see that you can still build a meaningful life around your sickness/disability. It doesn’t magically remove all of the barriers and hardships. It doesn’t mean we won’t still have to fight to access appropriate healthcare or support. It doesn’t take away the many injustices faced by those who have been neglected for decades and it won’t make things any easier in that respect. But I do think that it’s ok to share these two sides of life. I don’t think you’re a bad advocate or patient if you let yourself and others celebrate joy and happiness once in a while. You don’t have to be advocating every second of every day.

Of course I wish I wasn’t sick, that goes without saying. And coming to terms with being disabled has been a tricky journey that is ongoing and in no way linear. I grieve the loss of my health and my mobility often. I have days where I just sit and cry for the opportunities lost to a life of ill health. But I also have days where I experience a lot of good stuff too. I belly laugh with (or usually at) my husband, put the world to rights with my friends and eat really delicious food. I chat with my mum and find comfort in how alike we are. I watch my cats snoozing in the sun and bask in the sounds of their contented purrs. I listen to my nieces talking and wonder at how I got lucky enough to be an Auntie to two such wee smashers.

I’m disabled and yes, life is much harder as a result but that doesn’t make up the sum of my parts. I am also a wife, a pal, an Auntie, a sister, a daughter. I’m a lover of Twilight TikToks and murder mysteries, a peanut butter fiend who makes friends with all the local cats. I like board games and playing with my nieces at every available opportunity. I love being outside and growing things in my garden. I enjoy all of these things WITH my illness/disability and not in spite of it.

All these things that make me happy sit, somewhat messily, alongside all the other, crappier moments and they make up a life. A life that looks drastically different from what I envisioned for myself, but a life nonetheless.

I think it’s ok to share this side of things as well when you feel like it, You don’t always have to be advocating. Sometimes you can just post a really fit selfie or shit post about your cats if you want.