Who you are when you aren’t all you were before

LifeME/CFS

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One of the most difficult things to grapple with from my rapid fall from healthy person to a chronically ill person living with ME/CFS has been the gradual slipping away of parts of my identity.

The part that could still party and stay up late if I wanted to. The part that would travel the world with ease, energy and passion — and usually no itinerary. The part that could happily handle a few drinks and a few hours on the dancefloor. The part that kind-of-sorta had their financial shit together and was actually properly independent financially. The part that had more energy on weekends to do things besides chores. The part that was newly discovering the joy of climbing mountains and lifting weights when I fell ill. The part that could be spontaneous. The part that could work a lot without it being a problem. The part that could clean her own flat. The part that could go to gigs. The part who could go to poor or remote communities in developing countries. The part that had the energy to really dress up sometimes. The part that could ride a bike without dizzy spells.

All of these identities have just fallen away.

Of course, many parts of my personality remain — when I have the energy. For example, at times I can feel myself wanting to make a snarky/cheeky/silly quip or something but my brain feels too sluggish to pull it off… sometimes I try and fail and just go ‘hmm nevermind!’

I don’t want my main identity to be ‘sick person’ but it is difficult when it is such a dominating presence, dictating everything I do and how I feel as I move through the world every day.

So sometimes I try to remember the parts of my identity that I still have, or positive things that I have picked up from having to let go of these other things.

I think I have definitely become more empathetic from this experience (though I am still prickly on the outside at times and take a while to really warm up to and trust people I don’t know). My feminism has only grown stronger, seeing the systemic neglect of this illness (which, surprise, predominantly affects women) and also due to some of the treatment and attitudes I have been subjected to since falling ill approximately two-years-eight-months-and-two-weeks ago (not that I am counting).

I definitely am even more grateful for those friends and family who have stood by and been a huge support.

So much of what I’ve lost has been on the ‘doing stuff’ front, so I’ve had to find other fatigue-friendly things to fill my time – like listening to podcasts, and very slow-going sewing projects (cutting out without a proper table is the hardest part! The sewing itself is quite easy.) Online yoga classes that I can only do half of and that are designed to be easy (let’s just say autonomic dysfunction is not a friend of downward dog, nor anything that goes up and down too much). Stretching a lot.

And I am proud that I have held on to some things even though it has been hard. Like, my professional identity is still largely intact, despite having to make a lot of changes to how I work and at times feeling self-conscious about the not-invisible parts of my invisible illness (i.e. when I look exhausted or flushed) or having to not do certain things. I still try to be a good friend to people, and to support my family as best I can. I am now trying to grapple back my finances. I still cook when I can on the weekends. And I am in a slightly better headspace at the moment I think — that aspect has been quite difficult to manage, but I’m trying to come to terms with the fact that this illness might not go away, so I have to position myself for the long-haul.

I’m also still grappling with the illness identity — many people in the ME/CFS community identify as having a disability, but I still haven’t really been able to consider myself as such. I always think ‘they are more affected than me, I am not sick enough to identify as being disabled, hopefully this will be temporary’ etc etc. It’s not about not wanting to be part of that community, who are a wonderful group of people doing amazing advocacy on disabilities both visible and invisible, it’s more about my own feelings of not being ‘sick enough’ to deserve to have that identity. A recent example: Lorde is playing in Sydney at the end of the year, and I love her new album. I thought about going with my sis, but there was only standing tickets for sale. After getting to the gig (at the Opera House forecourt), and standing for more than four hours in a crowd at a big loud concert in summer, I would be ruined. So I emailed to ask if there were any seated options, explaining that I have an illness that means I get tired easily. They emailed back, very helpfully, and said that the only option would be to go in a wheelchair spot, and they could lend me the chair, to just let them know asap so they could reserve a space. I didn’t end up writing back. Even though there was a part of my brain that was like ‘well, if that’s what you need to survive the concert that you want to go to, you should do it’, there was another louder part that was like ‘you don’t deserve to take up one of those wheelchair spots, you aren’t sick enough’. So that’s an ongoing identity challenge.

But there’s a part of your identity that illness affects that doesn’t get talked about: the things that stay the same even if you might not want them to. It’s a kind of a stunting effect on the life development front. For example — being single. Dating was arduous and disappointing enough before I got sick, let alone now. Or, being childless — a recent piece published on the Washington Post showed the grief of wanting children with ME/CFS but realising it might be a bad idea because of your illness, something that is on my mind being in my 30s. And then the more trivial — will I always be a renter, consigned to not putting holes in the wall or choosing paint colours? Could I become a pet-owner or will I never be able to afford to? Will I ever be an ‘expat’ again or have I had all my chances?

Our identities do always change throughout life – if they didn’t I would still be best known for being Albury-Wodonga’s fattest little teen dancer on the eisteddfod circuit, so thank gawd they change — but there is something particularly affecting about the shock and scale of an illness like this. Particularly when it doesn’t show up neatly on a test, making this colossal wave of mostly-non-positive change especially hard to grapple with.

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