Grief and chronic illness

Chronic illness is about so much more than the physical illness itself. It seeps into every aspect of your being, slowly making swaps and exchanges in every facet of life until one day, you wonder who you even are anymore.

Since starting this blog, I’ve been surprised at how much I’ve posted about emotions. I’m not a particularly emotional person on the face of it, and I find it hard to express how I’m feeling. But somehow it’s easier to write down how I’m feeling than it is to say it out loud. In fact, my very first blog post was about The emotions of chronic illness.

Today I’ve been thinking a lot about grief. Grief is a funny thing. It’s a strong word that we tend to reserve for the death of a loved one. But really, grief is much broader than that. A relationship break-up – grief for the person you once loved. Moving away – grief for the friendships you’re leaving behind. The beginning of winter – grief over the warm sunshine being lost. Ok, the last one might be stretching it a bit. But I do think that for those of us who get a bit blue at the end of the summer, there is a hint of grief in there.

In chronic illness, grief is a particularly strong emotion, and for me at least, it’s something I struggle with on a very regular basis. As the realisation sets in that your health problems are not going anywhere fast, you have to adjust to a new sense of self-identity, and with that, loss of the person you once were. This is something I find especially difficult because my health fluctuates greatly from day to day, week to week, month to month. This time last year, I was very unwell, doing very little except working and sleeping. This time six months ago, I was in India training to be a yoga teacher. And now, six months on again, I am somewhere in between, but certainly closer to the sick version of me than the healthy version.

I have been reflecting today on my time in India, and looking back on pictures, thinking how strong and healthy I looked. Don’t get me wrong, I was by no means in complete health, and the trip was a huge struggle for me, both physically and mentally. But I did it, I went there, I completed the course and I came home stronger in so many ways. There is absolutely no way I would be able to do that right now. The last month I have had more bad days than good days, and I know my body would not allow me to be working that hard at the moment. In fact, I haven’t been to any of my usual yoga classes for two weeks. That might not sound like a lot, but yoga is a huge part of who I am. It picks me up when I’m feeling knocked down, calms my mind, and reminds me of everything I love about life. So when I am too sick for yoga, I feel like a part of me is missing. And with that, comes grief.

But it’s not just about yoga. I look at my life now and I see only a fraction of the life I once had. So much of it is constrained by illness. I haven’t had a nice evening with a friend for way too long. I haven’t been for a run, or even a gentle jog, for a couple of years. I haven’t been able to scoff a bar of dairy milk for god knows how long and I know, I know, dairy milk is cheap and nasty and mostly sugar but I don’t care what you say, it’s delicious. I reflect on my life now and sometimes I wonder what I am actually achieving. The only thing I really have to be proud of at the moment is my PhD, which I have just started and am really excited about. But even that is filled with anxiety and limitation. Will I be able to keep up with the demands of my workload? Will the stress make me even sicker? Will I even be well enough to see it through?

I look back over my life and I used to feel so proud of who I was, of what I was achieving. I was such a go-getter. No, I still AM a go-getter, but it doesn’t feel like there is much I can actually go and get anymore. The extent of what I am doing, both in my day-to-day life and in the broader picture, is only a fraction of what it used to be. I feel as though my self-identity has totally shifted, and not through any choice of my own. The person I am now is not the person I want to be. Not the person I signed up to be. And I feel grief over the version of me I have lost.

Chronic illness is about so much more than the physical illness itself. It seeps into every aspect of your being, slowly making swaps and exchanges in every facet of life until one day, you wonder who you even are anymore. But, all is not lost. Chronic illness has given me things too, not just taken away. Although it may be hard to convince myself of it sometimes, I know deep down that I am not a lesser person now than I used to be, I am simply a different person. And ultimately, we are all changing every day, whether we like it or not. Perhaps chronic illness just better prepares us for the inevitable losses and gains of life.

When chronic illness rules the world

I’ve just got back from a wonderful few days in the welsh countryside with my lovely man. I hadn’t been feeling well for about a week before we went, but I felt well enough to go and we had planned to mainly do nothing, except a bit of walking if we could, so it seemed like a good idea.

Actually, it was a very good idea. A few days away from the hustle and bustle of life, just the two of us in the middle of nowhere. The chance to switch off from everything was amazing, and I’m so lucky to have opportunities like that. I follow many chronic illness blogs and I know that for many with chronic illness, trips away like that would be absolutely impossible, so I am grateful that I still have some freedom.

Nonetheless, there is, as always, a twinge of sadness that my illness still controls so much of my life. I still felt sick for most of the time we were away, and once in a while it would be nice to just be able to enjoy normal experiences like a trip away without feeling crap. We went for a nice walk, about 5 miles, on our first day there, which was so beautiful, but it definitely tired me out and I felt pretty bad in the evening. I’m such a go-getter, an active person, and I’ve adored the outdoors since I was a little girl. I remember as a small child jumping at the chance to help my Dad in the garden, and I think that love of the outdoors will be a firm part of who I am until the day I die. Nothing much makes me happier than the countryside. So in an ideal world, I would have spent the entire 3 days of our trip outdoors in one form or another.

I look back on who I once was. Many years ago, when my health was in a better place, I would have been up at the crack of dawn, going for a cross-country run, coming back for breakfast before heading out for a 10 mile walk, before heading out for a nice dinner and a few drinks. On this holiday, however, a gentle 5 mile walk was pretty much all I could manage.

Of course, I know that I am lucky I can walk 5 miles. There are many people in the world who are not so fortunate, and there are a multitude of reasons why people can no longer do things they used to once love, of which chronic illness is just one. I know these things, and I remind myself of how lucky I am every day. But sometimes, the sense of loss all gets a little too much and I roll into a big hole of self-pity.

Unfortunately today is one of these days. We were driving back from Wales and we were both feeling a little hungry, so we stopped at a service station to try and grab a snack. My boyfriend found himself a couple of tasty morsels, but there was nothing gluten & dairy free there for me except a packet of rice cakes. I bought the rice cakes. I actually quite like rice cakes, but it wasn’t quite the tasty wholesome brunch I was hoping for, and seeing my boyfriend’s scotch egg (God I LOVE scotch eggs!) was enough to push me into a full-blown wallowing, self-pitying tantrum.

It just feels that illness has taken so much from me, and that packet of rice cakes was all it took for me to reflect on all the things I have lost. Independence, fertility, the ability to pop out for a meal without having to trawl through online menus first, being able to stay up late without worrying how sick it’ll make me the next day, alcohol, cake, waking up for an early-morning run…. etc etc.

I always try my damnedest not to let illness rule my life. Quote from the front page of this blog: ” I do not accept that I should lie back and let Epstein Barr define me”. But sometimes it feels like I am fighting a losing battle. As time goes on I feel like it rules more and more of my life. It is on my mind every second of every day. The first thing I think when I wake up each morning is, how sick do I feel today? The last thing I think when I go to bed at night is, how sick will I be tomorrow? Every single decision I make – career choices, whether to go to yoga class or go home and rest, what to have for dinner, what time to go to bed, whether to make plans with friends – is made with chronic illness in mind. I am so sick of the control it has not only over my body, but my mind, and actually my entire life. I fear that the day is just around the corner when I will be entirely defined by illness. That, if asked to describe me in one sentence, my family and friends would say “she’s the one who’s always sick”.