Multiple miscarriages: How they have broken me, changed me, and helped me to grow (Part 3)

This is Part 3 in a three-part guest series. See Part 1 here and Part 2 here.

The way forward?

‘Take responsibility of how I react’. I read in a book that we are always choosing. That sounds too easy, I thought, I didn’t choose to lose my babies. But the book actually meant that we are choosing how we react to what happens to us. I now choose to try to accept that it was not my fault that I lost my babies. My self-critical mind wants me to believe that I am weak, because I fell in a hole each time and that others wouldn’t have fallen so deep or would have climbed out faster and with less help. But I am learning to recognize that I have made a lot of good choices and am responsible for the fact that I did climb out again. I chose to talk, to face and explore all the emotions, ask for help, go to therapy, gave others opportunities to support me, challenged myself and perhaps most importantly I chose to be open to learning a lot along the way. Remind me of that next time I feel low and tell you how weak I am!!!

A plan B. Further tests did not yield any explanations as to why I keep losing my babies. Is that good or bad news? So what now? According to the doctors, we just need to ‘try’ again and either it will work, or have genetic testing done after 5 miscarriages. So I chose to take pressure off the ‘baby project’ by formulating an alternative medium-term plan. I am not giving up, but I want to face reality and put some control back into this process that seems mostly out of my control. I can’t live with having the baby dream as my only goal to work towards, as it can get all-consuming and self destroying. I always need something to work towards and to look forward to.

So in 2021, I will have 6 months of unpaid leave and travel – all arranged with work. Am I giving up? No. From now, that is another year of trying and then I will need a big exciting break. Every day, month or pregnancy will inevitably bring me closer to either my dream of having a baby or my dream of travelling for 6 months, rather than putting me back to square one. I can only hope that will take the pressure off a bit – which can’t be good for my physical health either. Maybe that is what people who had no problem having a baby meant by ‘just relax’. 2021 won’t be the end of the road, but the step up to level 2. We can keep trying and step up the game to private tests and private miscarriage clinics whilst further developing a model of a childless life with meaning.

Permission to be and explore. I have chosen to give this mindfulness thing a whole-hearted go and have committed to doing 30 minutes of mindfulness practice every day on an 8 week course. Mindfulness is all about noticing primary reactions to situations – noticing feelings, allowing them to be there and exploring them without judgement – and distinguishing them from secondary reactions – jumping on the old familiar association train that leads to self-critical thoughts. So far it has helped me to allow to feel grief without beating myself up and I have noticed that individual waves of grief or low self-worth are shorter and makes me learn new things when I chose not to board the association train. I noticed that instead of feeling an emotion, my mind takes it away from the body and tries to explain it with the old story I have pieced together about myself: ‘I am a failure’.

Break old measures of success and choose better values. One of my self-help books has made me realize that my values have been shit. I have measured my worth by comparing myself to others, being good at something, validation from others and money. I have friends I admire for their successes, but I don’t choose them as friends because they are successful, but because of their personalities. My double standards have always dictated that I had to prove that I am good enough (as a person, a friend, an employee, an acro yoga partner etc).  One of my books suggest that good values are reality based, immediate and controllable. Validation from others, or feeling good enough, is not reality but just a reflection of what I think of myself, because I never know exactly what others think. Validation does rely on others and therefore is out of my control. Also, being good enough is not immediate, because I always move the goalpost as soon as one is reached. I didn’t feel good enough when I achieved a First in my BSc, when I got my PhD, when I got my job, or when I got married. I probably won’t feel good enough even if I have a baby one day.

So I have defined a few mottos that I have been experimenting with as measures of success and self worth – so far they have been helpful but of course the experimenting will continue.

  • Fight jealousy and give others less power over me. Jealousy is a big issue for me – pregnancy announcements are very difficult (even though I do not wish baby loss on anybody), but also, if I feel low, others always seem to achieve more for less effort. But the sad truth is that other people’s healthy and happy babies won’t affect my future pregnancies and other’s miscarriages won’t bring my babies back either. Equally, other people’s successes or special skills do not lessen my own achievements and skills – they might just have chosen to put emphasis on different things in life than I have.
  • Be emotionally honest, to myself and others, and to keep learning. Living by this motto means that denying my own emotions, not exploring feelings and thoughts, not learning from them and communicating that to others becomes the failure rather than having them in the first place. Doing this will continue to build the kind of relationships I value the most. A friend once said to me that I allow her to be herself and share her inner world because I am openly sharing my struggles. She also said that those struggles make me an interesting and likeable person rather than diminishing my worth. Those are some of the most treasured compliments I have ever received.
  • Put emphasis on enjoyment in my life rather than success and validation. The things that give me the biggest sense of achievement are often the ones that I have enjoyed working on. For example handstands, climbing mountains, overcoming the fear of scuba diving, making pretty documents at work and crafty things. And the good thing is that I can ease off pressure now, because I have worked hard in the past and I have arrived in a financially secure position. I have shifted to valuing my job because of the day-to-day joys it brings (being outside, interactions with my awesome colleagues, colleagues form other organisations and landowners, lots of doggy cuddles, helping the environment, always learning more, being allowed to be me) rather than feeling unsuccessful because I  am not earning as much as mister and misses x.
  •  ‘Be myself, everybody else is already taken’ – no further words needed here.

I find other people’s healing stories often sound like this: ‘I was bad and then I realized X and now I am wise, doing well and never look back’. And maybe this sounds like that, too. But that is not true. I am fully aware that recognizing these things and putting them into my own very personal context is a very important step. But forgetting it all after a triggering event has occurred is so easy. I can’t go back in time, I can’t do a factory reset of my brain and I can’t control or predict what the future will hold. All I can do is keep learning and keep trying in the now. And thank my babies for helping me learn and grow a million times more than any of my successes have.

‘Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow”’ Mary Anne Radmacher – stolen from my friend Katie’s blog. Katie has taught me a lot by talking and writing about her own journey through Lyme disease.

Things that helped me

Choices Exeter Baby Loss Counselling.

Saying goodbye: a personal story of baby loss and 90 days of support to walk you through grief. Zoe Clarke-Coates. Also Zoe’s Instagram @zoeadelle

The baby loss guide: practical and compassionate support with a day-by-day resource to navigate the path of grief.

Miscarriage, what every woman needs to know. Professor Lesley Regan.

The power of vulnerability. Ted Talk by Brene Brown.

The lost tribe of childless women. Ted Talk by Jody Day.

Living the life unexpected. 12 weeks to your plan B for a meaningful and fulfilling future without children. Jody Day.

The subtle art of not giving a fuck, a counterintuitive approach to living a good life. Mark Manson.

13 Things mentally strong people don’t do. Amy Morin.

Multiple miscarriages: How they have broken me, changed me, and helped me to grow (Part 2)

This is a Part 2 in a three-part guest post series. See Part 1 here.

Miscarriage number 2

The trapdoor opens a second time. This time, 6 weeks later, ‘I am sorry but the hormone levels have already dropped again’ was the sentence that opened the trapdoor again. But this time it lead to an even darker place.

Loss of hope, naked fear and sheer panic. The only way to describe my immediate responses to my second miscarriage is a complete loss of hope, naked fear and sheer panic – not just about whether I would ever have a baby or not, but whether the emotional pain would ever go away again and whether I will ever regain control over my life. I was in a state of panic for 3 days with hardly any sleep. I constantly switched from fight (destroying things in anger, anger at myself, the world and others who had repeatedly told me that I need to hope and that it will all be fine the second time) to flight (running through the park, hyperventilating) to moments of howling on the floor and repeating ‘I can’t do this anymore, I don’t want to feel anything anymore’ again and again in a loop. My husband looked after me with endless patience, restrained me, held me, fed me, ran with me around the park, told me to breathe, let my shouting wash over him – the miscarriages have tested our relationship and brought us together.

The calm that happened after that storm (helped along with medication) was relief that is indescribable. I slept. I just existed. Having come out of the state of panic was the most important thing. The thoughts about the miscarriage were still there, but their severity was numbed for a while. Having had the panics gave me permission to take time off and all life goals were reduced to remaining present and not going to the panicky place again. I knew after those three days that something big had changed, that we needed a longer break from trying and that I wouldn’t ever go back to my old self and old life.

The dome of fog. Grief after the second miscarriage was like living under a dome of fog that shaded out everything and separated me from the outside world. I could only concentrate on myself and my issues, they were always present. The old life had been blocked out. The world outside was still turning at its usual rate, but my world was turning in slow motion. Staying in the dome felt safe, the fog numbed me from outside triggers and I could digest what was already there. My life seemed on hold, slowed down from the usual business and being goal oriented. The aim was to get through every day. Slowly, the dome seemed to crack in places, letting some light in for short periods of time. It started lifting for bits of time when I could do something else and concentrate on something other than my pain. Slowly I could let little things back into my life and test how they felt, for example going outside, seeing people or going for a swim. I am forever grateful for the few people who stayed with me through the time I lived under that dome and shut myself away.

Breaking bad coping mechanisms. Number 2 marked a complete breakdown of bad coping mechanisms I had built up through my whole life. I have always struggled with the motto ‘you can only do your best’, instead ‘if I haven’t achieved yet, I just need to work harder’ has always been my coping mechanism. Not a healthy one, I know, and one which only works if I kept being hard on myself. An important aspect about that coping mechanism is the belief that I am somewhat in control of where I am going. I always worried what would happen if I got to a point when giving my best was simply not good enough. Well, that moment had now arrived. The NHS did not help. Further investigations are only done after three miscarriages. There was nothing for me to work on to improve the outcome next time. ‘Simply’ just try again, sit back, ‘try not to worry’ (the best advice ever given in human history) and watch the shit storm hit again.

Acceptance and controlling the controllable rather than the uncontrollable. Whilst I had no control over the baby situation, I took control over other aspects. Whilst everything seemed on hold and old goals had gone, I had the headspace and time to invest in my well-being. Counterintuitive to my old coping mechanisms, that meant taking pressure off rather than putting more on. I worked at myself to accept the concept of luck. Whilst others have a baby because they got lucky rather than working harder or having better bodies than me, I was unlucky rather than having failed. That then worked to my benefit with other aspects, too. My parents had saved money for me which I had never touched because I felt I hadn’t earned it for myself. Now I could accept that I didn’t need to have earned it all – I was just lucky. Having the savings as backup and realizing that if we can’t have children, we don’t need that much money, I managed to ease off my drive to save money all the time and went to 3 days a week. Instead of trying to control the uncontrollable – the baby project, I took control of the now and invested in the life now, have time to heal, allow myself to have time to do nice things and see the nice things in day-to-day life rather than chasing big dreams. We also went to Hawaii and fulfilled a dream about diving with Manta rays and exploring volcanoes.

Miscarriage support literature. I read everything I could possibly find about miscarriages: the latest research findings, personal stories, Ted talks, podcasts and support literature. There is more information out there than I expected. The power of all those was learning about the science of miscarriages when doctors are reluctant to discuss it, permission to feel how I felt because others felt similarly and benefiting from what others had learnt. Whilst talking to fellow miscarriage sufferers after number 1 was helpful, it wasn’t enough after number 2. Now I needed more depth to those conversations and struggled to find them. On reflection I guess other people who publish their stories have explored the depth of emotions to a similar extent, but I also do think that multiple miscarriages bring up more than single miscarriages and most people I know have had single miscarriages and now have healthy babies.

Gifts from my second baby. Living under the dome has taught me how to spend time with myself. Many people advised me to ‘look after myself’ after the first miscarriage and I had no idea how to actually do that. Now I had made the first steps in easing off pressure rather than pushing and kicking myself when I am down. My husband’s support through my existential crisis has brought us closer and made our relationship stronger.

Climbing out of the dark hole. Three months after the second miscarriage I had managed to climb up and look over the edge of the dark hole once again. We attended a ‘saying goodbye’ event at Exeter Cathedral. I would highly recommend going to one of these. Three months seemed like a long break, but I now recognize that I had not given myself much time to heal at all.

Miscarriage number 3 and the due date of number 1

Denial. Miscarriage number 3, at first, affected me so much less than the others. I thought it was because I had faced so many aspects of grief and failure already and perhaps had invested less hope and dreams into this pregnancy. I worked a lot of overtime. It was only denial – the pain and grief was only delayed.

‘Nobody gets a hero card’. I learnt a very important thing: whilst I felt strong because I didn’t have time off work throughout this miscarriage, it didn’t earn me any respect from others. That was a very interesting finding. After the other two miscarriages I had craved acknowledgement from others and been beating myself up for not being ‘strong’ but falling apart. Was that feeling of being weak and dealing with it badly just within me? I still don’t know and this question still is a frequent visitor. When I went back to work too early after my first miscarriage and said to my boss that I felt I needed to be strong and function, he said ‘no, you don’t,  nobody gets a hero card’ – I now understand what he meant.

The trapdoor opens a third time. The trapdoor opened up yet again in the week leading up to the due date of number 1. How was I going to face that day, having just had another loss? The feeling of emptiness and hopelessness was back. I was all too aware that I should have been off work already, anxiously awaiting the birth. I would already know the gender, the name. I would have seen the little face on a screen, heard the heartbeat, I would have already communicated with my baby via feeling the kicking, stroking the belly and showing it the sounds of the world, I would have bought those fabrics I love and made things for my baby. I should be in this weird moment, where any time, a new life will start.

It is my own responsibility to make myself feel better again – in that I am completely alone, nobody else can tell me how to do this, because I have to do it my way. I have never been good at dealing with my own problems on my own. That is where this really strong need to talk to others comes from and my comparisons to others. Their way didn’t work for me and that made me feel like I was a failure (hello again!). The strong feeling that others dealt with their miscarriages better than I have comes from that place, too. ‘Everybody deals with things in different ways’. Countless people have said this to me. It always seemed like an ‘empty’ saying to me, like saying something tastes different when it actually doesn’t taste as it should. My counselling made me realize that there are actually situations that I can deal with better than others. I know that is probably not a big surprise to you but it was a humongous finding for me.

Learning to distinguish between real friends and acquaintances. The understanding that I had to find my own way was terrifying. Does that mean that I am completely alone and that I shouldn’t talk to others about it, that I have been making a fool of myself for needing to talk as much and for oversharing all the time? No, it doesn’t mean that, but it meant that I also learnt a very important lesson: I learnt to define what good friendships are to me and therefore who are my real friends. I couldn’t be everybody’s real friend and not everybody I like could be my real friend. For me, real friendships are those in which both parties help each other find their own way through situations and share their inner world to a similar extent. Sadly that also meant realizing that some ‘friends’ are actually just acquaintances.

Am I going to be in the hole forever? The losses, the inability to carry a child (past the point of ever developing a heartbeat) and the sense of failure associated with that threatened to become my identity, it was all-consuming. Sometimes I could see myself from the outside and I always had this double loser badge attached to me: This is a woman only in shape, she does not function as a woman and can’t sustain pregnancies. Also, jealousy and self-pity were eating me up from inside. At best, a pregnancy announcement would send me tumbling down into the hole of grief about my babies and what I should have in my arms, or at least in my womb, right now. But let me be completely honest, at worst, a pregnancy announcement would highlight my failure, bring up anger that the other person is showing me up by easily doing the very thing that I desperately want but can’t do. I don’t want to be that person.

Climbing out, again. I really don’t want to be that person and also I recognized that I can’t live my life from now on in a constant loop of miscarriage – falling apart – coping by taking a day at a time – fighting my way back to some sort of normality – try again – miscarriage and so on. I also recognized that my other issues were there before the miscarriages and will be there whether I will end up having a baby or not. So I started working on myself and read self-help books – something my previous coping mechanisms of being busy and always striving hadn’t allowed me the time for. And time I had, as we had decided we needed a proper 6 month break. I also fulfilled myself another dream and went on a liveaboard dive trip around the Komodo Islands in Indonesia.

Continue reading: Part 3 (A way forward)

Multiple miscarriages: How they have broken me, changed me, and helped me to grow (Part 1)

Today I am pleased to present a series of guest posts from a good friend of mine, who is writing about her experiences with multiple miscarriages. Although miscarriages and chronic illness may seem like two very different things, we have found that many elements of our experiences, and the ways that they have impacted us, are actually quite similar. I am really delighted that she is sharing her story with us all.

Introduction and overview

A year ago today I had my first miscarriage. A year later, after 2 further losses, I am no further in this whole baby journey and still battling my way through the emotional and mental jungle. If anyone had told me a year ago, that I would spend this day having gone through 2 further losses and 2 due dates, I wouldn’t have believed that I could endure this.

A trap door opened with each miscarriage and I fell into a dark hole and worked hard to slowly climb out of the hole again, just to fall straight back in with the next miscarriage. The miscarriages have broken me, each in their different way, but in many ways I have come out of it stronger. It does not always seem that way; sometimes I get hit by a fresh wave of grief and am temporarily (seconds, hours or days) back at the very raw square one, worried I have to start all over again on the healing journey out of the dark hole.

Today I am sharing my reflections on what the miscarriages have brought up for me – so much more than ‘just’ the loss of a baby and each loss has brought up different things, challenged me in different ways and has also taught me new things. Why am I openly sharing something so personal, hurtful and unique to me? Well, miscarriages are mostly not talked about. In a world where one only posts about achievements and the beautiful moments in life, I want to be authentic and emotionally honest.  

I hope that I or my story can be a lifebuoy for other women and men in the future, whether they know me or not. The very few people who had opened up to me about their baby loss before it happened to me were my lifebuoy that helped me from drowning when the news sunk in – I knew who I could confide in, who would understand me, I knew I wasn’t alone. The ‘1 in 4 club’ only revealed itself to me once I openly talked about it.

I hope this post will give people a glimpse of what the emotional and mental landscape of somebody looks like who has suffered miscarriages. How would anybody know when this topic is so hushed up?

Writing is an incredibly useful healing tool for me. It helps me properly sort through things and writing it as a post makes me do it properly. Despite talking to many people about this, I feel as though I never get the opportunity to explain myself fully.

I have faced the process of grief head on, with every miscarriage and have processed all the individual aspects of it. I wasn’t being brave. Denial was no option for me, the emotions were too strong to be pushed away and my babies were too precious not to be grieved and talked about. My path through grief is unique to me. Many aspects linked to the miscarriages are very similar to my all too familiar triggers of low self-esteem, anxiety and depression, which probably intensified everything I was feeling.

One of the most important gifts my babies have given me is to break me enough to actually start addressing much bigger issues. Formulating my way forward and trying to live to those new principles has really helped me – obviously, still with regular waves of grief washing over me.

With the anniversary of the first miscarriage looming and several pregnancy announcements, the trapdoor had opened once again.  I was back in the dark hole with all the grief and associated emotions putting a heavy weight on my chest and making it hard to breath. What a set back! I was worried that all my ‘grief work’ had been for nothing and that I would always sit in the hole. So I started writing this. It helped. Last time I sat down and wrote for the due date of number 1, it felt like I had downloaded the mess from my brain, sorted it into something tangible and could then deleted it from the brain. I had a few months of breathing freer than before. The same thing happened again. Today, I actually feel good, even thought I was convinced two weeks ago that I would not be able to cope with the anniversary.

Keep calm and keep climbing. All I can do is try and try again to climb out of the dark hole, every time I have fallen in, whether it is caused by further baby losses or triggers of low self-esteem, anxiety and depression. And maybe, over time, I might even learn to recognize the trapdoor before I fall into it and acquire the skills to walk around it.

Miscarriage number 1

The first time the trapdoor opened. I booked a private 9 week scan, too impatient to wait until 12 weeks. I thought it could ease my anxiety whether everything is going alright. Despite worrying about it, I couldn’t stop myself from imagining what it might feel like to see a heartbeat, almost crying happy tears in anticipation. Instead, we heard ‘I am sorry, there is no heartbeat’. The sentence that opened a trapdoor.

Permission to grieve? How far does a baby have to be developed to be a baby? I struggled with the concept that there hadn’t been a recognizable baby shape, more a lump of cells that I had lost and that meant I wasn’t allowed to be upset. It goes hand-in-hand with a lot of (admittedly well meaning) ‘at least it was early, at least you hadn’t seen the baby yet’ statements. People from older generations always say to me that it would have been easier back then without early scans, because without having seen the baby one wouldn’t build a bond with it. Why was I so upset about losing something the medical professionals at best call ‘products of conception’? Because for me, it was my baby, a lost future, a loss of dreams and imagined pictures, from the moment the pregnancy test was positive. What helped me most was people verbally acknowledging the severity of what I was going though, it gave me permission to feel as I was feeling. The first time the baby-loss councillors actually said to me in words ‘you have lost your baby’ was incredible. Finally, I was allowed to call it my baby!

Failure. My body had failed me. I had always been able to trust in my body when I needed it to function and my good physical health was what in my mind made up for my suffering mentally. Despite all the worrying, I had started to believe in my body with every day that went by without bleeding. My body had lured me into a false sense of security. Being pregnant had helped me to take pressure from myself to achieve, because my body was busy doing more important things. That was a much softer and comfortable world to live in. The worst feeling for somebody with low self-esteem is having had confidence in themselves where no confidence was due. Not only my body had failed, but I had failed to anticipate the failure, making me an even bigger failure. Failure, failure, failure.

Shame. There was a very strong feeling of shame, complimenting that sense of failure. At first, I didn’t want people to know as they would know that I failed, when for most people having a baby seems a natural and easy thing to do (from the outside or how people want to portrait it). People don’t talk about their miscarriages for many reasons personal to them. Many admit to ‘failure’ only to others who admit to miscarriages first or once they have a baby in their arms. The general advice is to not tell anybody until after the 3 month scan after which the risk of miscarriages is lower.      

I would like to note here that I am a person of double standards. I would never consider anyone who has had a miscarriage, health issues or anything else happen to them as failures, ever. But somehow I have to comply with higher standards than other people and am much more compassionate with others than with myself. The feeling of shame remained, but the need to talk and get support was much stronger. I was going through the hardest time in my life and needed to talk, I needed time off from work. Also it is simply not in my nature to be withdrawn and I am not capable of bottling things up – I need to talk, I always have and I always will!

One million what ifs and the feeling of guilt. Did I do something wrong? Have I killed my baby? Those few glasses of wine when I didn’t know I was pregnant? That time I didn’t land softly when doing acroyoga? Did my worrying about a miscarriage kill my baby? It is so much harder to accept something didn’t work when we don’t know what actually went wrong – that also means that there is no way of trying harder next time. I know that ‘it wasn’t meant to be’ is a comment that is supposed to take that guilt away, but it always made me wonder whether that meant that my physical and emotional pain wasn’t meant to be?

I am weak. Not only did I feel shame about the fact that I had ’mis’ carried my baby, but I also felt ashamed about how I dealt with it. Quite often I felt pressure from people to be positive and in a way sometimes felt like I wasn’t allowed to grieve. People want to say something positive to help (including me), but it actually had the opposite effect. It minimised the situation and therefore removed my permission to grieve. This feeling of having dealt with it badly is a really hard one for me to fight. I have always struggled with a need to belong, to be understood by others, get validation from others, fear from being alone and ultimately being judged as a failure (by others and myself).

Climbing out of the dark hole. Eventually, once the physical aspect had finally been resolved with an operation, I managed to find my way back into a life that somewhat resembled my life pre-loss. The first proper day back at work felt great. I found my way back to my hobbies pre-loss. I had hope the next pregnancy would work out, like it seems to with so many people who have had one miscarriage. I was crazily impatient to try again and try harder ASAP – a coping mechanism we will get to soon.

Gifts from my first baby.  I have learnt what a big support network I have around me. I am so grateful for my husband and for having friendships that allow me to be myself and share my issues. I am so glad for having such a great work place. Most of my colleagues are good friends, everyone was supportive because I gave them a chance to be by telling them what had happened and how I was feeling. My boss was incredible, he advised me to take as much time as I needed and when I came back way too early and was crying in the corridor, he took two hours out of his working day and drove me home. I could cry now just thinking about such kindness. I am also very thankful to the ladies at choices pregnancy centre, who helped me work through it all.

Continue reading here: Part 2 (Miscarriage 2 and Miscarriage 3)

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.