Detaching from the identity of chronic illness

Sometimes, when times are really bad, it is hard to know where the illness stops and where you begin.

I attended a yoga workshop today, where the underlying theme was opening the heart and letting go of that which no longer serves you. It ticked all the right boxes of where I am in my life at the moment, and I left feeling lighter, calmer and at peace with the world. In case you didn’t know: I love yoga.

As I was lying there in meditation, we were invited to let go of the things in our life that we no longer need to hold on to, and I realised that for me, that thing is illness. For those of you reading this post who also experience chronic illness, I suspect this will make a lot of sense, but for those of you who are generally fit and healthy, it may sound pretty bizarre. But chronic illness is so much more than just being chronically ill.  When you experience the same pattern of symptoms repeatedly over many months, years, or even decades, those symptoms become the very essence of your existence. Long-term illness creeps its way into every single aspect of your life: work, home, relationships, hobbies, diet, bedtime routine, the list goes on and on. Every decision you make, and I mean every decision, has chronic illness behind it. It’s like a constant parrot on your shoulder that you can never get rid of. Chronic illness becomes a part of your identity. Sometimes, when times are really bad, it is hard to know where the illness stops and where you begin. And not only that, but all of the thoughts, beliefs and emotions that come along with those symptoms, become part of your identity too.

Up until very recently, these were some of the thoughts I experienced on an almost daily basis:

  • Oh no, these symptoms again, I can’t cope with this
  • How much longer is this going to go on for?
  • Will I ever get better?
  • I’m going to have to cancel my plans again, what if “insert friend’s name here” gets pissed off?
  • YAY, I feel good today. Oh wait, how long is it going to last?
  • Maybe if I just meditated more/took this supplement/lived off of ice cubes, I might get better

Etc, etc, etc.

In addition to my US treatment for Lyme disease, I recently added a “brain retraining” programme for CFS/ME into my recovery. Sounds a bit nuts, and I don’t want to go into details of this just yet, as it’s early days and I’m still working out what I think about it all. But without question, it is helping. The focus of this programme is to calm the nervous system, in two main ways: 1) directly through meditation, deep breathing and stress management, and 2) by reducing attention (read: obsession) on symptoms, illness, and all the kinds of thoughts listed above. Amongst other things, it involves redirecting focus away from negative thoughts, beliefs and images, to more positive, empowering ones.

For the first couple of weeks, it was hard-going. The negative thoughts were pretty much constant. Any time I stood up, sat down, got in the car, noticed a symptom, noticed a lack of symptom…basically any time I so much as took a breath, a thought or image related to chronic illness would crop up. It was really quite eye-opening to start paying attention to these thoughts, not running from them or trying to push them away, but just noticing they were there, accepting their presence, and then calmly redirecting my attention. It made me realise just how much illness has become ingrained in my entire existence; my self-identity. And the trouble with this, is that it is a self-perpetuating cycle. How can you get better when you are constantly telling yourself, without even realising, that you and this illness are one?

But after those difficult first couple of weeks, changes started to happen. The thoughts were cropping up a little less, and my brain was automatically picking the positive images over the negative ones. Don’t get me wrong, the thoughts are still there. They’ve been there for about ten years so I guess they’re not going to go away overnight. But when I wake up in the morning, my first thought is no longer “am I feeling sick today?”. When I make plans for next week, I’m no longer assuming that there’s a good chance I won’t be well enough. Of course, I know that realistically, there is still a good chance I won’t be well enough, but I am no longer stressing, obsessing and expecting the worst. I imagine health. I picture energy. I believe, deep down in my soul, that I am on the road to recovery. And that may happen next month, it may happen in a year – it doesn’t really matter. I am no longer attached to a timeline, a “deadline” of how much longer I can cope with this for.

For the first time in my entire life I have stopped the frantic search for an answer from the outside world, and instead, I am looking within. And slowly, but surely, I am detaching from my identity as a sick person.

Lessons I’ve learned from chronic illness

I have been thinking for a while now about how long it’s been since I last blogged, and how I really should make the time to write something. So I log on to my blog and it tells me it’s been two months since I last posted. Streuth! This blogging business is high maintenance I tell you.

As way of a brief update: I went to Washington DC in May and am currently 6 weeks into treatment. It’s been a bumpy road so far, but I’ve been warned that this is a long treatment plan and to expect a marathon rather than a sprint (hurray, because I had so much fun that time I ran a half-marathon…). My physical health has been very variable, but I must confess that my mental health has been consistently struggling. There you go. I’ve broken the British we-don’t-talk-about-how-we-feel tradition and am laying my cards on the table. Although to be fair, I work in mental health research so if us folk can’t be honest about mental health, we’re all doomed.

I’m not sure why my mental health has taken a turn, but I’m trying not to fixate on it too much. Embracing my inner buddhist, I am reminding myself that a) life involves suffering, and b) our expectations, desires and aversions create a second layer of suffering over and above the initial suffering. In other words, shit happens. But, we add a heap-pile of shit on top of the initial little turd by the way we relate to, and think about, the turd. Sorry for the shit analogy, I didn’t mean for that to happen. The Buddha expresses it much more eloquently:

“When an untaught wordling is touched by a painful (bodily) feeling, he worries and grieves, he laments, beats his breast, weeps and is distraught. He thus experiences two kinds of feelings, a bodily and a mental feeling. It is as if a man were pierced by an arrow and, following the first piercing, he is hit by a second arrow. So that person will experience feelings caused by two arrows.”

So with that in mind, I’ve upped my meditation practice and am focusing simply on trying not to exacerbate the suffering. Along this theme, I’ve found myself thinking a lot lately about all the things I have learned from chronic illness. So here are just a few…

1. Cherish the small things

When life is going well, I feel like we get a bit greedy. We take health, happiness, love etc, for granted. When it’s gone, your baseline level of expectation changes. And so, for example, when you’ve spent the last week in bed, stepping out of the front door and feeling a gentle breeze against your skin, makes you feel so alive. But isn’t it kind of sad that we don’t notice those things until we’re in a bad place? Over the last couple of years I’ve really started paying more attention to the little pleasures, and somehow even the darkest of days can feel a little brighter when you notice the sun shining or the sounds of birds or the kind person who held the door open for you. Cherish the small things, because when the big things aren’t going very well, they can be a surprising source of joy.

2. Keep hold of your real friends and let go of the rest

That old cliché is true, you really do find out who your real friends are in times of adversity. I have to admit that over the years, I have often been surprised by the level of support offered by people I would consider more acquaintances than friends, and the lack of support sometimes offered by those I thought were close friends. Of course, everyone has their own stuff going on and it’s unreasonable to expect any friend to be there for you 24/7, and I also recognise that being chronically ill can tip the balance of friendship somewhat. I, for example, cannot reliably offer any of my friends regular catch-ups over tea, because my ability to meet and do friend stuff relies on it being at least a sort-of-alright health day, and that is difficult to predict from one day to the next. But, my good friends, although I’m sure inconvenienced and perhaps a bit miffed that I can’t always be there, never make me feel guilty for that. They understand, they accept, and they are kind. My university friends, despite only managing to see them once or twice a year, will often send me a “how are you?” text or offer me a real listening ear on the rare occasions we get to meet up. Chronic illness is truly lonely and isolating at times, but having even a small handful of good friends makes everything feel a little less miserable.

3. You are the expert of you

I’m sure there are many medical professionals that would cringe reading this, but frankly I don’t care because it is one of the biggest lessons I have learned in my years of ill health. I don’t care what anyone says, you know when something is really not right in your body. Maybe it doesn’t make sense, maybe medicine has no explanation for it, maybe when you say it out loud you sound totally off your trolley. I don’t care, if it’s happening in your body then only you know what it feels like. There have been so many times over the years when I have tried to explain to a doctor a set of symptoms, or a feeling, or a pattern, and I have been told that what I’m describing is simply not possible, only to later discover through my own reading of the (scientific) literature, that it is, in fact, entirely possible. Doctors don’t know everything. Science doesn’t know everything. That’s what makes science so exciting, there are new things to learn all the time! I was told for years that it was impossible to have severe flu symptoms with every menstrual cycle. For about two years I had the exact same symptoms, at the exact same time, every single month. I knew, 100% without any question whatsoever, that this was linked to my periods one way or another. And the same GP told me month after month, “it is not possible”. Many years later I saw a gynaecologist who agreed it’s unusual but acknowledged, nonetheless, that there was no doubt it was happening. And I now know that menstrual flares are reported anecdotally by thousands of women with Lyme disease. Maybe you haven’t been to medical school, but you have lived with your body every day since you were born, and you know what is normal for you.

4. Be your own advocate

Related to number 3. This has been a hard lesson for me and one I am still working on, because being assertive does not come easily to me. I don’t want confrontation, I don’t want to have to argue my case, I just want to sit quietly in the corner and mind my own business. Working in academia has helped me massively with this, because you always have to justify yourself in science, and sadly, no-one will do the speaking for you. Only you can say what you need. If you’re not getting what you need, there’s no point sitting around being polite about it. The onus is on you, and only you, to create change.

5. Life isn’t a race

When I was younger I used to put so much pressure on myself to achieve, achieve, achieve. I, like many young people I’m sure, was convinced I’d be married with kids and a successful career by the time I was 30. Well I can tell you, 30 is creeping around the corner and I’m not married, am currently unable to have children and am going to be a full-time student until 2019. And I’m chronically ill; the limitations of which I could never have imagined as a child. But I am an infinitely better person now than I was then. I am more patient, more chilled out, more confident, more thankful, less pessimistic, less judgemental. I still have a way to go on all those things and more but that’s exactly the point – life is a journey, not a race to the end. There is no deadline for growth, for change, for learning. You haven’t suddenly made it the day you get married or have a kid or get a promotion or own a house. As soon as you reach one goal you will be thinking about the next in the hope that it will suddenly make things better; make you better. So what’s the point of racing so fast to the next goal that you don’t even stop to enjoy the scenery? Of all the things I have been forced to take note of in recent years, the thing that has changed me the most is simply learning to take it down a notch. As much as it pains me to admit it, I know that when I push too hard, my health suffers. That might be doing too much exercise, not getting enough sleep, having an argument, over-working, or just letting myself get stressed by day-to-day life. Chronic illness has forced me to pay more attention to the warning signs my body provides, and although the limitations of that can be very frustrating, it is also a relief to feel like I have permission not to constantly worry about expectations and achievements.

There are many more things that I have learned from chronic illness. Perhaps I will write a part 2 to this post at some point. When everything feels a bit overwhelming, it can be really helpful to take a step back and look at the bigger picture. For anyone looking in from the outside, my life is far more flawed now than it was 10 years ago, but yet, on the inside, it is so much more fulfilling.

Wellness Wednesdays, and making time for me

You should sit in meditation for twenty minutes every day. Unless you are too busy; then you should sit for an hour.

Zen proverb

A friend shared this proverb with me a long time ago, and I often think of it when I am struggling with my own meditation practice, dietary habits, and all the other things that I try and prioritise because I believe they make a difference to my wellbeing.

There is no denying that we live in an incredibly fast-paced world. The level of expectation on all of us to achieve and to ‘do’, is crazy, and finding the space to slow down and take time out for ourselves is becoming increasingly difficult. However, I do also think that it is our own responsibility to choose what we prioritise. The phrase “I don’t have time for that” is one of my biggest bug-bears, even though I catch myself saying it often, if not out loud then at least in my head. Because what we really mean when we say “I don’t have time for that”, is “that’s not a priority for me”. How can I tell myself I don’t have the time for meditation today while watching dog videos on facebook or googling some shit that I really have no need to google? And when I write it on my blog it sounds totally ridiculous and stupid, but it is a genuine struggle to make time for the things that really matter when technology provides us with constant distractions.

There are lots of things I try to prioritise in order to help my health. This includes eating a paleo diet, which means cooking pretty much everything from scratch and very few shortcut meals like pizza or sandwiches or pasta. It includes regular meditation which I know has a positive effect on my stress levels and therefore on my health. I have found that the key to a successful regular meditation practice is setting aside the same time every day in which to do it. But this brings its own challenges, especially since the only time I reliably have free every day is first thing in the morning. And getting up half an hour earlier is all well and good when I’m feeling well, but when I am sick and literally feel like I have the flu, it’s not so easy. Stress is a huge trigger for my health and so I try really hard to not overdo it, to keep at least a couple of evenings every week free in my diary for rest and recuperation, and to allow myself plenty of downtime. But this becomes increasingly difficult the better I feel. If I’m having a good day or a good week then I want to do absolutely everything right now – I want to embrace the good and make the most of it, because I know there is a good chance tomorrow won’t be so good.

I am grateful that chronic illness has shown me the importance of looking after myself. I am grateful that I know how to take care of myself and that I have the resources to do so. But, I am still human after all. I still have a job, a house to look after, a relationship to nurture, friendships to cherish, rabbits to take care of… as well as all the stresses of chronic illness.

So this week I have introduced ‘Wellness Wednesdays’ into my life! This is one day of the week where I promise to myself – no social media, no excessive scrolling through google, no rushing around like a headless chicken. Today I have meditated, I have eaten well, I have rested, and I have chosen to prioritise the things that nourish me. That’s not to say I won’t try to do all of those things again tomorrow. I try to do them every day, but I also accept that it is not always easy. Wellness Wednesdays is an opportunity for me to remind myself of what really matters. To prioritise me. I would love to have some company in my quest for Wellness Wednesdays, so if you fancy joining in, message me!