The Lives We Have Lost - Reader Participation Post

One of my readers (Brent - @ArgyrosfeniX on Twitter) suggested a while back now, that I write a post asking readers about what careers they have lost or are struggling to keep up with due to their illness or disability. I thought this was a great idea, and have been intending to use it since. :)

So many of us have lost so much due to sickness and disability - and those losses are hard, and have a major impact not just on our day to day lives, but on our futures, our finances, our family relationships, our self esteem ... I could go on! I think it's certainly something that's very important for us to talk about, because it can be a real grieving process to lose a job or career - or an education that we have invested our time and energy into for many years. There are many other losses associated with illness, many of which are just as devastating!

So, my questions for everyone reading here today are :

What were you doing before you became sick/disabled? What did you lose when you became sick? and How has your life and your future changed as a result of these losses?

Before my M.E. became severe, I was working as a Neonatal Intensive Care Nurse, looking after premature and sick babies on the regional NICU unit. It was a really amazing job, and an opportunity to do something that really mattered! I quite honestly really loved that job!! Nurses in this country don't exactly get paid an amazing salary, but it was good enough to live comfortably - and as I worked my way up, would have become pretty good.

It was 8 years ago now that my ME relapsed, and I became housebound and eventually had to give up my job. That's 8 years of experience in one of the best UK NICU units, lost. A career in shatters. Had I kept working there, I could have been a sister by now.

Instead, I'm living on disability benefits, and have lost my house because I wasn't bringing in enough money to cover the mortgage (and the extortionate Liverpool council tax fees!) despite living fairly humbly. My credit was damaged because of a graduate loan I took out when I was still working, and was subsequently unable to cover the payments after I quit my job. Even were I to get better tomorrow, (and regain my lost memories and neurological functions that allowed me to actually safely do the job!) the chances of me ever working as a nurse again are small - I would likely have to re-train in some way, possibly even have to go back to uni, because the medical world moves on so quickly - which I couldn't afford after all these years of living just above the bread line.

My self esteem has quite frankly taken quite a battering over the years. I suppose a lot of my identity was wrapped up in being a nurse. I felt like I mattered and was making a difference in people's lives... now I barely see anyone to make a difference!! I've had to learn to see myself through different filters, to not see my value in what I can do, but in who I am. I'm not there yet, but I'm certainly better than I was even a year ago.

Another important loss for me, which I see almost equally to my career, is that I all but lost my support system. When I relapsed, I was just coming out of an abusive marriage, and was trying to deal with all that had gone on during my years of marriage. In one foul swoop I lost the ability to go to therapy, to spend time on my online support group. I have lost both time and depth of relationship with most of my family members, and completely lost my real life friends ... only one of them has stuck with me through my illness, and she (incredibly!) became my carer and has been with me through it all! No-one else could cope with the limitations my illness placed on me, and my friends basically dropped like flies over the first year I was housebound. Since my relapse, I've very much had to go it alone, with my journal to vent to. I think I'm in a fairly good place now, but I can't say it hasn't been hard to be so alone with so much pain to deal with.

However I think the single biggest thing I have lost is the years when I could have been creating a family. I have Polycystic Ovarian Syndrome, which causes fertility issues. It would have been next to impossible for me to get pregnant 8 years ago, and would almost certainly have required IVF. Now ... well, it's never going to happen, and that's something I just have to deal with. I still want to have kids ... I've always wanted to adopt or foster anyway. But with ME, the likelihood of me becoming well enough to have kids and actually be able to raise them (without them ending up as carers for me!!) gets less every year I spend this severely ill, so there's a chance that I may never have children. And of course, the older I get, the harder it becomes to meet someone to spend my life with, too, and that's even without worrying about the fact that I have no opportunities to meet someone anyway, as I don't leave my bed, never mind my house! Quite frankly, I wouldn't willingly inflict my life or limitations on someone else anyway!

Lastly, and simply, I lost my health. The single biggest resource a person has! You can't overestimate just how much that means!!

Don't get me wrong. I don't allow myself to live in regret, or to dwell constantly on these losses. But I believe talking about it both helps us to cope with the loss, and to grieve for it. Maybe even more importantly, I hope that it will also help people outside our situations to better understand what those of us with chronic illnesses actually go through - what it really means to live this kind of life, day in, day out. That's certainly a very current issue, considering the magnitude of media slamming sick and disabled people, and painting us as weak, lazy, and selfish people who place a burden on society without ever giving anything back. Worse, they see us as liars, out to bleed the welfare state dry without any substantial or even real illness or disability! Society's perception and understanding really need to change, and the only way that can happen is for them to see the truth of our lives. And so I write my truth, and hope that people can truly hear it. :)

"But living a life of regret would have kept me looking backwards, rather than forwards. Hope is forward leaning. It’s the ripple of energy that trusts there are resources enough to live into the future. I had to focus on what I could do, not what I could not." ~ Julie Neraas ~

I would really love it if you guys would share your stories, your previous lives, your losses and your hopes, with me here - with each other. Comment away! :)

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

The Lives We Have Lost - Reader Participation Post

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