Sunday, 5 June 2011

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.

Dear Diary : Taken by Emily Mills. Click here to go to her Flickr page
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! :)

Susannah's Signature
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! :)



  1. I'm still your friend and haven't gone anywhere.

  2. Yes I'm really lucky that I had such close friends online and have been able to keep track with you guys at least to some point. Real life friends just didn't cope with it all so well.

    I can't imagine what it would be like for someone who didn't spend time online. Other than my best friend here at home, most days/weeks/months my only contact is with people online. I honestly don't know what I'd do without you, and my other friends online, missy! :)

    I hadn't realised you were actually reading here, heh. Not sure whether to be happy, scared, or both! ;) Least I don't have to mind my p's and q's with you, anyway! ;) Hehehe. Love you sweetie!!

  3. I came here expecting to read 500 stories! Where is everybody?

    My story is like yours except I was blessed with 2 kids. However, it isn't easy being a sick mother, and the stress on the kids is terrible. They were sure I was going to die, and tried to steel themselves for it even though I was here.

    Same story though - got sick, couldn't work, lost my home, living on disability. Wishing I could go places with my family. Wishing I could walk. Even being able to stand and cook dinner would be amazing. Friends don't get it. Even doctors don't get it!

    I am nothing like my former self. I have become fearful and isolated. It's hard to "dwell in possibility" when everything seems impossible and there is no money for the bills, let alone fancy equipment like a motorized wheelchair or nice vacations.

    Fortunately my brain still works, so I'm in my head all day, reading and writing and listening. There is no end to the marvels in the world. I sleep with my computer for when the insomnia starts!

    Thanks for starting this convo. I hope others find it soon.

    Be well - as well as you can!

  4. Before I became sick with Myalgic Encephalomyelitis I was working in retail and trying to save money to travel the world and decide what I wanted to do with my life.

    Due to M.E I have lost my hopes and dreams that I once had. On a positive note I have now found new ones and I hope one day I am well enough to take on the old ones again.

    For the moment I am just existing but my new dream and hope is that I can start living again one day soon.

    Sam @

  5. Anonymous - Hi! Thanks for posting. :)
    I can only imagine how difficult it is to be a mum as well as dealing with this illness! I've struggled badly enough just with my friends and family, and looking after myself. I see people who manage parenthood and ME as basically heroes!!

    I relate very much to what you said about being nothing like your former self. I feel like a totally different person in many, many ways after so many years locked away in my house. It really does change you in a very real, very powerful way, doesn't it.

    Hia Sam, it's good to see you here. :) I've been enjoying very much reading your blog since you started it!

    It's awful to have lost so many hopes and dreams .. but also pretty amazing that you've managed to find new ones. I think that's probably key to surviving ME!!

    I hope that I can start living again one day soon, too. :) xx

  6. Hi, Susannah. I was working in human resources and had just completed my first graduate course in HR Management when I got mononucleosis. I never recovered and was then diagnosed with ME/CFS.

    Had I not gotten sick, I'm sure I'd have my masters degree and be making loads of money by now. :)

    In hindsight, I think I would have preferred to go back to school for a master's in speech pathology. I have always had an interest in that. But at the time, I sort o fell into HR and was really enjoying it.

    I'd like to think I'd be married with kids too. :)

    By fiance has a PhD in mechanical engineering, and would likely be teaching had he not gotten ill.

    It's sad to think of all the contributions to society we all could have made had we not gotten ill!

    Thanks for this post.

  7. I love you Susannah and really hope you know that.