How to Support Someone with High Functioning Depression

Today is ‘World Mental Health Day’ which seems like a good time to write this post. For the last decade I have been struggling on and off with what is frequently referred to as ‘high functioning depression’. It’s a term coined to describe depression that doesn’t match the stereotype of the illness, of those not able to get out of bed, unable to take care of themselves, struggling to maintain relationships. Many people with high functioning depression will still go into work, have some kind of social life, stay on top of the essentials of life. It’s sometimes called ‘smiling depression’ because those struggling with it can appear happy to the outside world.

But for those with this illness the smile is masking a lot of pain, they’re often screaming on the inside. They may appear okay yet they are still battling a significant and dangerous mental illness. They could still be struggling with suicidal ideation or destructive coping strategies. We often see the tragic headlines of someone who took their own life after seemingly going about life as normal the day before.

Countless times over the years, when I’ve been struggling with my mental health, I’ve been asked ‘what can we do help?’ It’s a question that I’ve rarely had a good answer for, it’s easy to just default to ‘nothing’ or ‘I’ll let you know if I think of anything’. Articulating what you need is hard when you’re in the midst of a depressive episode and believing you deserve the help of other people is even harder. But after a decade of experience with this illness, I’ve learnt a lot about what is and isn’t helpful. Some of these things may be unique to me as an individual, depression manifests differently in different people. However, I imagine there will also be common ground here that I share with others with high functioning depression.

So how can you support someone with high functioning depression?

1. Listen and don’t take them at face value

We are part of a society that judges by appearances and we can easily fall into that trap when assessing how a loved one is doing. When confronted with an immaculately dressed, seemingly successful person in their tidy home it can be easy not to hear them when they say they’re not okay. It’s tempting to tell them of all the reasons why they are fine, reeling off achievements and evidence. But in doing so you have inadvertently invalidated their feelings and left them feeling unheard.

If your loved one says they’re not coping and are struggling, you need to take that seriously. There may be little you can do to help, apart from offer friendship and signpost them to professional support. But don’t underestimate the power of listening and showing someone you care. The very fact that they have trusted you with this information shows that they consider you a safe person in their life. Try and hold that safe space for them where they can be vulnerable, free from judgment, knowing you love them regardless.

2. Stay in touch

When you’re struggling with depression, communicating with friends and family can be difficult. I often find all of my energy goes into holding it together at work and the basics of self care. Weeks can go by without me managing to initiate communication even by something as simple as sending a text message. If you, as someone who loves someone with depression, are able to make the effort to check in and keep the lines of communication open then please do. Don’t assume that no news is good news.

On a similar theme if someone with depression reaches out and asks for your time then try and respond promptly. Saying no is absolutely fine but by saying your no quickly you give the person time to ask someone else. When my mood was really low I would struggle with how to fill a weekend to protect myself from too much alone time. It was important for me to have enough human contact each day so I would try and make arrangements. If I heard back from friends quickly that they weren’t free I could make other plans. However, there have been times where the ‘no’ came through too late and I ended up with a weekend that was too empty.

Obviously everyone is going through their own stuff so sometimes responding to messages can fall by the wayside. But if you can make an extra effort then it could make a huge difference.

3. Help with the ‘impossible tasks’

Depression can make seemingly every day tasks feel impossible. For those with lower functioning depression these could be everyday tasks like brushing teeth, getting out of bed, leaving the house. With high functioning depression we tend to have the basics down but there will still be tasks that feel impossible which will vary from person to person.

For me in the past these have been things like ringing up the dentist to see if they’re taking new patients, which took me several years to do. Or researching and buying a new laptop. These days it’s things like cutting my hedge or getting quotes for some building work I need. I know they should be possible and I know I’ll feel better when they’re done but most of the time I can’t even contemplate doing them.

So if you have time and capacity try asking your loved one with high functioning depression what their ‘impossible tasks’ are and offer to lend a hand.

4. Kind words for unkind days

The thing with high functioning depression is that you always pay a price for keeping going. There will be times when you are no longer functional and find yourself crumbling. For me I would hold it together all day and then fall apart in the evenings when I was alone. Those would be the times where my mood would plummet even further and I would struggle to see the point of keeping going. I find it incredibly difficult to reach out at those moments, with so little left in the tank for communication.

One thing I cling to on those nights is the words of love and encouragement from those who care about me. I have a box where I keep things that may help ground me in those darkest moments. Most helpful of all the things in there are cards and letters from loved ones, telling me what I mean to them, that I am loved and valued. Words I can come back to time and time again.

Depression tells you a lot of lies and makes you believe you are too much, that you lack any redeeming qualities and that people will be better off without you. Memories of kindness fade and become difficult to recall, but it’s harder to argue with words there in black and white. Sending someone with high functioning depression a card or letter with kind words for those unkindest of days can help remind them that there is light beyond the current darkness.

5. Look after your own mental health

And lastly but by no means least it is important you take care of your own mental health. Supporting someone with mental illness, high functioning or not, is hard work and can be emotionally draining. It’s easy to give out more than you can afford to and neglect your own wellbeing. But your loved one doesn’t want you to suffer from carrying too much of their pain. You have to put on your own oxygen mask before you can help anyone else. Work out how much time and energy you can commit and communicate those boundaries kindly but clearly. Good mental health is a precious resource to be protected at all costs, it’s so hard to get back once lost.

If you’re reading this and know me personally then I have no doubt you will have done one or more of these things for me over the years. Thank you. It’s the people you share life with that makes it worth living. Mental illness is a tough road to navigate yourself or walk alongside someone else. There may be little you can do practically to support someone with high functioning depression but don’t underestimate the difference your love makes.

The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair, and though in all lands love is now mingled with grief, it grows perhaps the greater.”

JRR Tolkien

Being a Healthy Weight and Still Having an Eating Disorder

I finished with my dietitian this week, after working together for over a year she has now left the service. She’s convinced I can do it all on my own now. Right now I don’t know if I can or can’t, just that it will be much harder without her. I think it’ll be a while before I can sort through the sadness and the fear to work out where to go from here.

It’s true we’ve achieved a lot over the last year. I’ve managed to weight restore. I’m now back at the weight I was before the relapse, although still waiting for it to stabilise. I’m following a meal plan that should give my body what it needs and am able to eat a reasonably varied diet. I’ve challenged many fears and rules around food.

From the outside it looks I’m fully recovered. I no longer wear my pain on my frame, you can’t trace it in bones protruding from my skin. In a world that still judges mental illness on appearances, surely I must be all better now?

But an eating disorder like Anorexia is so much more than the weight loss and behaviours. It’s the thoughts underneath, holding you captive. It’s the voices whispering, the disgust when you look in the mirror, the anxiety after each meal. It’s feeling undeserving of food and nourishment. It’s wanting to waste away. It’s the constant internal battles, the angel waging war with the devil on your shoulder. It’s when ‘fat’ becomes a feeling so overwhelming that it can bring you to your knees, wanting to claw off your skin, whilst you hate yourself for caring so much.

To be a healthy weight and still have these thoughts means you constantly feel like a failure. By the eating disorder for eating too much, being too much, taking up too much space. But also by the healthier part of you for still having these thoughts this far down the line, you should have beaten them by now. It can feel like whatever you do you can’t win.

And having weight restored leaves you open to comments that you aren’t always ready for. Somehow whenever I am told how ‘well’ I look my brain always hears ‘fat’. I find it hard not to feel invalidated when i have told someone honestly how tough it is to be met with ‘well you look good’. It’s hard to make peace with looking ‘better’ when you know that by doing so you will not be able to access any further help and support. It’s a bitter pill to swallow that treatment for your mental illness is entirely dependent on how much you weigh. It’s ludicrous but true.

It’s common for an eating disorder to be described as having another person living in your head, masquerading as a friend, their voice manipulating and deceiving you. In that case it feels like it should be easy to tell apart that voice from the rest of you. But a lot of the time an eating disorder is much more subtle. It can be a gentle nudge that you actually don’t want that food in front of you, you’re already full. Suggesting you substitute one food for another so quietly it feels like your idea. A feeling of having ‘too much’ or needing ‘just a little bit less’. It can be so tangled up in your own thoughts that you end up confused and constantly questioning yourself. It’s exhausting and unrelenting. It’s so easy to put one foot wrong and fall down a rabbit hole.

Somedays I miss my body being smaller and look longingly at those with slimmer figures than me. Back then I worried less about being overweight, watching the numbers descend on the scales made me feel safe. I miss the security of the rules the eating disorder gave me and the buzz of restriction. Life felt simpler then as my world shrunk to contain only calories and hunger.

Yet I know I will find no happiness there. As with many things, the only way out of the pain of recovery is to keep going through it. I’m trying to hold onto the fact that I recovered from this once, even if the memory of it now feels vague and hard to pin down. Recovery is a journey not a destination and it’s one I’m on each day with each little step forward.

I may be writing this today scared and overwhelmed but I am not defeated. I’ve come so far, fought my way through so many difficult days. Sure these days ahead may bring fresh challenges, but all I have to do is take each hour as it comes. There’s more to life than food and calories, weight and restriction, struggle and mental illness. There will be brighter days to come. We just have to hold our ground.

Grassy park on a sunny day

Rediscovering the Edges

Mental illness changes you. It can be all encompassing, descending on your life like a dark cloud, leaving you feeling like the very essence of who you are is under assault. Everything is tainted, your personality, your hopes and dreams, your self-esteem, even your relationships. You can loose your identity in the fog, barely able to recognise yourself, feeling like an echo of who you used to be.

Whilst much is restored as you recover from mental illness, you can never fully reverse the effects. However much you heal you will always carry with you the memories of the darkness and it will shape how you experience the world now. Some of this will be positive, like not taking simple joys for granted, but it can also make it hard to stay in the moment when you’re constantly on alert for the next storm. Periods of mental illness seem to age you far quicker than normal life. It often feels like you’ve lived a lot in a small space of time, plumbing depths that many will never know. You feel older and wiser, more cautious and less trusting of life.

And sometimes these episodes of mental illness permanently alter our capabilities. We can’t always go back to the busy, hectic pace of life we worked at before. Our capacity may be lower now because we have to devote some of our energy to nurture and continue to care for our mental health. Our priorities may have been forced to shift and they can’t be shifted back.

As the initial hurricane of mental illness passes you are left assessing the damage. And this is where I find myself today, counting the cost, trying to work out who I am now. What’s still the same, what’s been lost. I have to rediscover the edges of who I am, my limitations, the boundaries I can push and the others I must stay within, the challenges I can stretch to and those that are now beyond me. Calculating what I need to change about my life to fit this new version of myself.

Each new or revisited experience has become an experiment, testing the hypothesis to find out what is and isn’t possible. I’ve been relieved to find that some things haven’t changed. A couple of weeks ago I got the opportunity to be part of a small paired back worship team in my christian workplace. It’s something I hadn’t done in that environment for several years, before anxiety had set in and my confidence had crumbled. I was pleased to discover that the girl who would shake like a leaf when singing a solo is still in her element when you give her a worship song and microphone. Anxiety barely makes an appearance. Rediscovering this part of myself was almost like discovering a childhood toy in the attic, finding joy in the familiarity.

Situations that used to trigger anxiety still have the same effect. I can’t get through a work conference without panic and tears. But now there are even more triggers. Meals out with friends and colleagues are an absolute minefield. Any crowded or noisy place triggers my fight and flight response. In contrast I also experience much anxiety if I have to spend long stretches of time on my own, which didn’t used to be the case.

I feel lucky to discover that I can still succeed at work, that I have preserved the ability to put on a brave face and get on with things. Although perhaps this costs me more than it did before. I can still care for my godchildren and take much pleasure in being ‘Auntie Sarah’. I can still enjoy most of the things I used to before, although reading and any intense television show is still largely beyond me.

In this exploration of edges I’ve found some darker shapes, mapping what feels like grief with some trauma mixed in. No one has died, or maybe a part of me has. The person I thought I would be, the healed and whole version of me. I don’t think I can get her back and I wonder if maybe she’s been gone for years, lost somewhere in the decade of mental illness. Maybe some of this pain is old not new, bubbling under the surface. I wonder if maybe I’d been too busy hating myself to grieve for her. It’s a grief that feels vast and complicated, I can feel the waves of it hit me unexpectedly. Sometimes it feels like the pain is me, defining and controlling who I am.

But even this pain has edges. And beyond the edges there is so much more. More emotions, more thoughts, more of life in all its fulness. We carry so much within ourselves, good and bad, known and unknown, vast and contained.

In this rediscovering of the edges of who I am I have to remember that I am more than what I can and can’t do, more than my capacity and limitations, more than my joys and struggles. It’s less about who I am and more about whose I am, a much loved daughter of my heavenly father. And whatever I find in the edges of myself, there are other edges that matter more. The edges of the cross of Jesus, that will forever cover up my failings, be always moving me forward on the journey of healing and freedom. No matter how strong the pain feels, He has defeated it. The night may feel dark but the dawn is coming.

Wooden cross

The Courage to Stay

Today is ‘World Suicide Prevention Day’. Each year I try and write something for it. But the truth is I wasn’t sure I’d be writing this year. If you’d asked me last December if I’d be sat here today then I would have said no. Depression was battering me and I wasn’t sure I could survive it. The suicidal ideation was always there and the only thing that changed was whether or not I thought I would act on it. I remember saying to God after one bleak night where I’d used the crisis services, that I’d give him two more months and if it wasn’t better by then I was out.

I know this isn’t what you want me to say. I know you’d want me to say that staying alive was easy. That the image of your loving faces was always enough. That even on the blackest nights I could reel off dozens of reasons to stay. That hope has always been a constant force within my life. That God shined out his light every time I prayed. But I’d be lying.

Depression can be all consuming and overwhelming. When it descends and the night sets in it’s like you’re frozen in time. There is no before and after. The pain is excruciating, so vast and suffocating that you’re convinced it will last forever. Memories of happier times are like a weird dream you can’t quite grasp hold of. People tell you there’ll be joy again but you don’t believe them. It’s like a chasm has opened within your chest sucking in all light, joy and hope, slowly draining away your personality as it extinguishes your future.

I was constantly analysing life, trying to work out if it was worth living. The pain felt so heavy it was impossible to imagine I could ever experience enough joy to balance it out. Each day I was collecting evidence to stay or to leave. But filtered through the gaze of depression there were always more crosses than ticks.

I knew those who loved me would have asked me to stay. But sometimes it felt like they didn’t know what they were asking. If you felt the weight of pain and heartache would you be so quick to dismiss it? Can you carry some of it for me? Will you sit with me in those long dark nights waiting for the dawn to come?

The truth is sometimes the darkness is the vicious monster stalking your steps and other times it feels like an embrace that you can surrender yourself to and let it carry you away.

There’s a line in a poem called ‘Relapse’ by Blythe Baird that really speaks to me: ‘Wanting to die is not the same as wanting to come home and I’m still trying to remember that’. It’s something that I’m still trying to remember myself. To separate that longing to be home, to belong, be safe and accepted, from that dark pull of desire to no longer be in this pain-filled world.

I believe choosing to stay through the pain is the most courageous thing you can do. But I haven’t always known how much courage I have. I believe life should be fought for but I also have days where I want nothing more than to give up. I believe emotions are temporary but I’ve seen how despair can stick to you like glue whilst joy flits in and out of your life like a butterfly.

Yet in spite of all this, in spite of all the miles I’ve walked in the dark I am still here. Still breathing, still healing, still writing the story of my life.

I chose to stay. And each day I have continued to choose to stay. Yes I still have days where I’m exhausted and done and I question that decision. But I have more days now where I’m glad I’m here.

I’m grateful for all the things, big and small, that I would have missed if I’d left. For reunions with friends, long overdue hugs. Bedtime stories with small ones, little hands in mine. For escaping the walls of my house and walks in the park in all weathers. For encouragement at work and learning to code. For getting hooked on a new computer game or binging a box set. The spring blossoms and the smell of the air after a summer shower. For hours with a cat asleep on my lap and ‘welcome home’ meows. For quality time with loved ones, all the moments I’m reminded I’m loved and I matter. The golden moments in the darkness of depression.

I’m writing this today because the stigma around suicide and suicidal ideation is deadly. We rarely talk about it till it’s too late and someone has lost their battle. If I hadn’t had people I could talk to about how I was feeling I wouldn’t be here either. Society labels those feeling suicidal as attention seeking and weak. Whilst labelling those who complete suicide as cowardly and selfish. This stigma harms those families of those we’ve lost as well as all those still here, battling severe mental illness. It keeps those suffering quiet, too scared to reach out.

And it’s so important that those struggling do reach out. For me the support of friends, family and medical professionals is key to why I’m still here. It’s vital that we understand that feeling suicidal isn’t a death sentence, you can survive the darkness and come out the other side. All of us have to be ready to have these difficult conversations with people in our lives, educating ourselves on the signs of suicide and learning to ask the right questions. And acknowledge the courage it takes for many to keep showing up for each new day.

If you’re reading this wrestling with suicidal thoughts then I see you. I know you being here to read these words has taken a monumental amount of strength and courage. I’m glad you’re here. Please reach out. No one else can carry our burdens for us but having someone to sit next to us in the darkness can make all the difference.

When you’re stuck in the darkness hope can be fleeting and fragile. It can be too much to hope that tomorrow will be a good day, that you’ll recover, that life will turn a corner. Sometimes the most you can do is hope to be surprised.

Hope that something about tomorrow will be different from your expectations. Maybe you’ll find a golden moment in a day that you expected to be joyless and full of despair. Maybe there’ll be a gap in the clouds that reminds you there is still blue sky up there somewhere. Maybe you’ll feel seen by a health professional or a loved one. Take those baby steps to get help and move towards a future where there can be light again. Maybe all the catastrophising and anxieties won’t come to pass. Maybe you are not the failure you believe yourself to be. Maybe you’re wrong.

Let’s give tomorrow the chance to surprise us all.

The Trauma of Mental Illness

I don’t feel myself right now. When I’m out of the house it can feel like the world is too bright, too loud. Sometimes I’m blinking in the light trying to remember who I’m supposed to be. I know the person I used to be must be in there somewhere but trying to rebuild her feels like recreating a portrait with finger paints, messy and a poor reflection. What was once effortless and natural is laboured and exhausting. It’s hard not to let the miles I’ve walked in the dark show on my face.

The world is changing. With each step back towards some kind of ‘normality’, we try and distance ourselves from the realities of the pandemic. It can feel like we’re trying to erase or gloss over the pain of lockdown and all that came with it. We have banished it to the safety of the past. Time to move forward. Time to begin again.

But like it or not we have all been through a collective trauma. Months of isolation and enforced separation from loved ones. Fearing for our own lives and those we care about. Many of us suffering the little griefs of moments lost, time slipped away. Or the bigger griefs of bereavement, of loosing health or livelihoods. It’s been chaotic, uncertain and scary.

Most of us are not the same people we were before lockdown began. It should come as no surprise that such difficult times have left their mark. Yet the more I think about it the more I see that it’s more than that for me. I have found mental illness in itself to be traumatic.

Maybe that sounds silly. If you’ve not experienced mental illness yourself it’s hard to understand what that’s like. There’s the illnesses themselves leaving you feeling under constant threat. Only it’s not a threat you can ever outrun as it’s taken root in your own mind. The very landscape of your mind changes until it is dark and unrecognisable. There is no refuge there. You are left battling yourself for your right to exist and live your life. A silent, constant war, that you fight largely alone. You barely recognise the person you see in the mirror.

You fight through the dark nights that seem to stretch endlessly, where all light has been leached from the world. You fight through the days where your smile is paper thin and the only armour you have to hide the pain. You fight for a future that no longer looks hopeful, but you press forward anyway, hoping to be surprised.

Then there’s all that comes as a result of the illness. The assessments where you have to bear your soul to complete strangers, tell them all your darkest thoughts. Each new person entering your life feels like you must rip yourself open again to show them where it hurts. Those bleak and faded waiting rooms where time stands still. There’s the professionals you come to trust who you loose before you’re ready. All the times you feel voiceless and ignored, one of many in a system stretched to breaking point. When help is fixed and time limited, regardless of whether or not you’ve got ‘better’.

Then there’s the way your illness impacts on the people in your life. Friends and family worried and confused. When you have to explain to those around you an illness that you don’t understand yourself. Somehow cast in the role of educator despite no training or preparation. The people who say cruel and unhelpful things under the guise of ‘helping’. Churches who over spiritualise your illness viewing it as at worst demonic or at best your fault, a failing of faith.

All these are true whatever season mental illness finds you in. But in this season of coronavirus I’ve fallen harder and further. I’ve not known darkness this dark before. The isolation stealing any colour there used to be. I’ve felt trapped and panicked, being unable to do the things I knew I needed to do to help myself. Without any resilience I’ve felt like a tiny boat battered by the waves, any negative or unforeseen event threatening to capsize me.

So maybe it’s not surprising some of us don’t feel ourselves right now. But it’s important we don’t let that keep us locked up behind closed doors. Connection after all is one of the keys to healing trauma. We were made for community, people who need other people.

And not all change is bad. Somehow out of the pain we will have learnt and grown. The darker threads woven into a tapestry whose picture we can’t yet see. We are broken vessels, treasures in jars of clay. We get to choose whether to fill the broken parts of ourselves with judgment or compassion. We are more than our joys or pain, more than the battles won or lost, more than seasons of health or illness. We have lived through so many dark nights. And we know the dawn will always come.

Illustration of boy riding a horse towards black clouds
The Boy, the mole, the fox and the Horse’ © Charlie Mackesy

Accepting Hard Truths

The last couple of weeks I have had a lot of time to think. Time to try and digest all that has happened over the last year and what the future may look like. I’ve been thinking a lot about when I was first diagnosed with depression over a decade ago. I’ve been wrestling with why things feel so different now than they did back then. In those days depression was a new concept to me, I was still a teenager, surfacing from the mess of hormones that ravaged my brain. Back then it seemed possible that mental illness was just a small blip on my horizon, a minor player come for a season and then banished for good. But this last decade has shown that not to be the case. Sure I’ve had seasons of relatively good mental health, but the dark clouds have always been building on the horizon.

Whilst I managed a good recovery from Anorexia back then and have some confidence I can do so again, depression has lingered. I’ve tried many different medications and treatments, some have given relief for precious months, others have proven ineffective. I’ve been blessed to be able to work and maintain a relatively normal life but I can’t deny that my struggles with mental illness have been enduring and lasting.

I’ve spent the last few months hoping and praying for a breakthrough, for a medication or professional to be able to give me the key to banish the darkness once and for all. But that breakthrough hasn’t come and I’m coming to the realisation that it’s not going to.

I don’t think I’m going to be cured of depression, miraculously or otherwise. This is a thorn in my flesh that I don’t believe God’s going to remove, although that won’t stop me praying for it. Instead I have to find a way to live a meaningful life with these challenges. To manage my mental health with wisdom and compassion, acknowledging the darkness whilst leaning towards the light.

There’s something powerful in that realisation. It means that instead of putting my life on hold for some golden day of breakthrough, I have to find a way to live a worthwhile and fulfilling life right now. With mental illness. To find joy and love here in this place. Knowing the future is for the most part on me can feel terrifying. There will be no miraculous quick fix only hard work and determination. But there’s also hope there. Instead of being at the mercy of therapy and treatment, brain chemistry or professionals it means I already have or can build the tools I need to move forward. I have within my grasp what I need to wrestle an abundant life back from these monsters. I can start today.

None of us are fixed points, we’re not set in stone. We all have the capacity to grow. And that’s what I’m being called to do, grow in the soil I’ve been planted. It’s not the soil I would have chosen, set in the shade with too frequent droughts. But it’s what I’ve got. And instead of feeling sorry for myself and railing at the injustice of it all, I have to make the best of it. If I don’t grow here the only other option is to wither and die. And as appealing as that sometimes feels, even the most self deprecating part of myself admits that I have more to offer the world than giving up.

White and pink flowers

It’s hard to write these words of acceptance because I’ve been deeply wounded by some other words in the past. People who have told me that ‘I don’t want to get better’ or ‘maybe I just have my identity in being ill’. That is not what this is. Mental illness is not my identity. It’s a part of my experience and woven into my brain chemistry but it’s not who I am. I am so much more.

And yes I want to keep fighting the temptation to let any illness define me, to let it envelop me and dictate what my future looks like. But if I spend the rest of my life fighting and denying this part of my life then I might as well give it the keys to my future right now. Because it will have already won. I would be throwing so much of my energy into that battle that there would be nothing left for the rest of life.

Instead I’m choosing to accept that I’m a person who experiences episodes of depression and anxiety. Someone who will always have to work hard to manage her mental health. And that’s not a path anyone would have chosen for me, but that doesn’t mean there can’t be blossoming and a full and vibrant life here. As much as I hate mental illness, it has shaped me into the person I am today.

Without these challenges I doubt I’d be writing this blog, I wouldn’t have discovered how much I love to write. My friendships and relationships would look different if I didn’t bring with me the knowledge of what it feels like to suffer and the empathy that comes with that shared human experience. My faith would be shallow without the deep roots I’ve needed to grow, digging into who God is, His character that doesn’t change with my circumstances. There’s so much more of who I am now that I can’t disentangle from who I would be if I’d known only perfect health. And whilst there’s much I would change there’s also plenty that I wouldn’t. This is me and don’t want to be ashamed of that.

So I’m taking the decision to accept that mental illness may always be a part of my story. But whatever happens I am the one holding the pen, the chapters to come are mine to write.

When God Could but Doesn’t

I had some difficult news last week. My dietitian is leaving. We’ve been working together for over a year and I trust her more than any other health professional still involved in my care. She’s leaving and there’s still so much left to work on. My weight gain has yet to level off, there’s still many rules around food we need to challenge, much that is still difficult and inflexible. It’s unclear if she will be replaced or if I will be left to figure it all out on my own.

Unless you’ve been in a similar situation it’s hard to understand how difficult this kind of change can be. Mental illness can be all consuming and overwhelming. It can feel like you’re adrift in a cold, dark ocean and these appointments can feel like a life raft. You’re often trapped in your own personal prison and so having someone, who not only understands but has the keys to help you out, is invaluable.

I don’t know what it is about this that has me not just sad but furious with God. Why have I been able to let other things slide but not this? Is it just the final straw after so may others? Just one disappointment too many?

There’s something about how seemingly mediocre and mundane this event is that is getting to me. It’s so clearly within God’s remit, a few tweaks here and there and we wouldn’t be in this position. It’s an hour a fortnight that makes such a difference to me, is it really too much to ask?

Three days after the news I got another challenge in the form of needing to socially isolate due to close contact with Covid. Falling just the wrong side of the rules around self-isolation changing in the UK. I’m writing this on day 4 of 9 days isolating, feeling increasingly imprisoned by the walls of my house, with too much space to sit with my disappointment and frustration.

I feel let down by God. I don’t believe in a God who is limited, hands tied behind His back due to free will or the enemy or whatever. I believe that whilst suffering is not caused by Him, as the story of Job shows, it can’t enter my life without His permission. I believe He could have made these last two years easier but He didn’t. And the longer it goes on the harder I find it to sit with.

I don’t known what to pray anymore. I can find the words to pray for other people but I don’t know how to pray for myself. Sometimes it feels like asking only to be disappointed is worse than not asking at all. It feels like me and God have very different ideas about what His good plans should look like. It’s so easy to picture Him as angry with me for all the ways I’ve messed up, or completely indifferent, not even caring.

I don’t know if I’m loosing my faith or if this is the core of what it means to have faith. This wrestling God for answers, waiting for just a glimpse of His purposes. Sitting with the doubt and uncertainty, living in the gap between His kingdom come and His kingdom not yet here. Finding a darker, grittier kind of trust, that is rooted in the juxtaposition of who God is and how much life hurts.

Because the thing is: I do know who God is. Truths chiselled out of the rock bottoms of all the hard times that have gone before. I know He is powerful, sovereign over not just my life but all the lives within creation. He is Lord over every atom of the universe. I know He is good, giving so many blessings, creating a planet full of beauty. And I know He is love, a Father with arms open wide, running towards the prodigal child.

Sure none of these things feel true right now. God’s power feels squashed by the vastness of a global pandemic and the overwhelming weight of my pain. His goodness seems to mock me as my cries go yet again unanswered. Most days it feels like God doesn’t even like me yet alone love me. Surely if he did life wouldn’t be quite this hard for so long?

But I learnt long ago that feelings are unreliable guides when it comes to truth. Just because something stops feeling true doesn’t mean it stops being true. The things that are true in the light when the sun’s shining down on us and our lives are as we want them to be, are still true in the dark when we’re cradling shattered dreams or watching our lives veer off course. But we have to fight harder to hold onto them.

I don’t know why God sometimes acts and sometimes doesn’t. Why He leaves us in seasons of suffering, sometimes giving and other times taking away. Life in this broken world can leave us with so many questions. And we may not get the answers to these questions this side of heaven. The creator of the universe doesn’t owe us an explanation, but that doesn’t mean it’s wrong to ask for one, to bring our hurt and confusion to Him. And sometimes as we see in the final chapters of Job God simply answers our suffering with a fresh revelation of who He is. Instead of taking away our pain, He changes our perspective.

“Where were you when I laid the earth’s foundation?…

Who stretched a measuring line across it?

On what were its footings set, or who laid its cornerstone — while the morning stars sang together and all the angels shouted for joy?

… Have you ever given orders to the morning, or shown the dawn it’s place”

Job 38:4, 5-7, 12

It’s true that right now God feels distant. But as I sit here in self-isolation looking at the beautiful flowers and surprise gifts sent by friends, with a phone full of messages of support and offers of help, I wonder if God’s love isn’t really that far away after all.

Dear Younger Me,

These are the days of hand knitted jumpers and 90s fashion trends. You’re accumulating an extensive soft toy collection. Spending endless hours playing schools with your big sister. You’re blonder now than you’ll ever be, with that fringe that will be constantly growing over your eyes. Your smile speaks of simpler times.

I wish I could pause you there in the age of pig tails and fairytales. I want to take you into my arms and shield you from the harshness of this world. To hold you where your heart is whole and free from scars. Protect you from the knocks and trials that will inevitably come.

Growing up won’t be easy, it rarely ever is. The stories lie: there is no such thing as ‘happily ever after’. At times happiness will feel unattainable, a pipe dream for others to embrace. Instead of chasing it look for small joys in the moment and find contentment there. Seek those golden moments that can be the stars in the night sky. I promise you they’ll always be there if you look for them.

You’re going to need to learn to just be. Steadfast and deep rooted. To weather the waves of emotion that will come and go, crashing against the shore of your heart. You are the sky, vast and limitless. Your struggles are the clouds, appearing for a time and then dissipating, try not to let them overwhelm you.

You are a ‘sensitive child’. As you grow up you’ll realise that sensitivity is actually empathy, a kind of emotional telepathy. You’ll always feel things deeply and it will be easy to get overburdened with other people’s pain. But if you harness it right it could be your superpower.

There is more to life than grades and exams. Knowing that won’t stop you pushing yourself to breaking point chasing perfection. Your worth should not be tied to a grade on a report card. You don’t have anything to prove. Please shed those unrealistic expectations sooner rather than later.

You will leave the bullies behind. One day you will look back and recognise the same brokenness in them that we all carry. Pain is universal, we can’t outrun it, or control it. All we can do is decide how we react to it. We can learn from it, choosing to grow, to let it shape us into stronger people. Or we can spread it, inflicting it on those around us, allowing it to multiply.

For you adulthood means that you’ll have all the answers. But the older you get the more you’ll realise you don’t know. Judge less and listen more. And when you don’t know what to say choose to love instead. Be quick to apologise when you’ve done wrong. But remember you don’t have to apologise for taking up the space you deserve to occupy.

I hate to tell you that you won’t outgrow the monsters under your bed. One day they’ll up sticks and move into your mind. Making it a place you’re scared to be, the landscape dark and ominous. Only you can banish them. There are no magic words or quick fixes. You’ll need hard work and determination, coupled with lots of help from other people.

I’m sorry for the days where I’ll turn on you. Try and squash you down or erase your existence. Sometimes it’s easier to try and bury the pain, but it always surfaces in the end. You are an easy scapegoat, foolish and inexperienced. But the difficult days to come aren’t your fault.

I wish I could tell you a different bedtime story, one with more fairy dust and unicorns than dungeons and dragons. But the truth is you’re going to need to be tough. Far tougher than you are now. You have so many battles to fight and I can’t yet see how the story will end for you.

But whatever happens don’t let the pain harden your heart. Resist the temptation to hide your weaknesses behind a fortress wall. There’s no shame in vulnerability, in fact it can be a powerful thing at the right time.

Nurture those words. There’s a power in them that you shouldn’t underestimate. They’ll be days where they will save you. Maybe even save others too.

Little one you can do this. Baby step by baby step you’ll move forward. You have your whole life ahead of you. Don’t give up, they’ll always be hope, on the good days and the bad. I believe in you.

Yours always.

Small child smiling in front of flower bushes

Not Enough Spoons

I am exhausted. Not the kind of tired you get after working too hard, fixed by a good holiday. Nor the kind of shattered you get as a parent running round after small children, fixed goodness knows when. Or the kind of fatigue you get after running a race, longing for a chair to collapse into.

It’s more like the kind of exhausted you get after a bad virus, where your limbs are heavy and getting off the sofa feels like exertion. Where you wake up exhausted and go to bed even more so. But even then that only works if you’ve been getting over a virus for the last six years. That in essence what life is like for me living with ME otherwise known as Chronic fatigue syndrome. But this persistent fatigue is likely one we share with our cousins with various chronic illnesses.

And so may I introduce you to ‘spoon theory’. This is a theory used by the chronic illness community to explain what life can be like with chronic conditions. The idea is you only have a set amount of spoons each day, a number which may be less than normal if you’ve slept badly or missed medication. Every activity in your day takes a certain amount of spoons, whether it be getting out of bed, getting dressed, going to the shops, going to work. Once you’ve used up your spoons they are gone, you don’t get any more. The question becomes how do you best use your spoons?

Collection of silver table spoons

It may sound like silly illustration, it’s hard to care a lot about cutlery. But it’s a metaphor that illustrates the kind of complex calculations you have to do when you’re living with chronic physical or mental illness, and have limited energy and capacity. No decision is straightforward or without repercussions.

This last fortnight I have been in a bad flare of fatigue, I am completely exhausted with less spoons than usual. Whatever the trigger for this particular episode it’s brought into sharper contrast because recently my ME has been relegated to the background by an eating disorder.

Over last year eighteen months or so the eating disorder has been holding all the spoons and lying about how many we’ve got. She was always on hand to assert that we had enough spoons for that long daily walk, no excuses accepted. Day by day becoming less in tune with my body, ignoring what didn’t fit with the narrative. She’s been playing fast and loose with the calculations, running up debts that we can’t afford and she never intended to pay. From the outside it looked like my spoons had multiplied, in reality they were dwindling by the day.

The problem is that despite how destructive an eating disorder is it did allow me to maintain a life closer to my perception of normality. I liked my long daily walks and the freedom they gave me. You have to understand the unrelenting grind of chronic fatigue to see why giving into the eating disorder became so appealing. It’s so all consuming there’s barely time to register you’re tired. And in place of your spoon calculations there is simply a set of non negotiable activities.

The thing is I desperately want some more spoons. There is no cure for ME and most treatment centres around managing the spoons you have. There is no magic spoon fairy to swoop down and give you some more. It’s an illness that is poorly understood or accepted by the medical community. Previously it’s not been the kind of chronic illness anyone cares about. That is until long Covid came on the scene and post viral chronic fatigue started making the headlines. It was cathartic watching the medical community, many of whom have denied the existence of chronic fatigue, have to bow to the overwhelming evidence. But still I doubt that this interest and thirst for research will benefit those of us who have been putting the chronic in chronic fatigue for years.

I feel like all the time I have to say how lucky I am to not have it worse. That I get to get out of bed and hold down a job. I know that’s a privilege many with my illness don’t get. But honestly some days I don’t feel lucky. I just feel done. Done with juggling spoons, those careful calculations. I just want to wake up in the morning with energy. For just a few hours where the first adjective I use to describe myself isn’t ‘tired’.

But there is always much to be grateful for. I am blessed to be able to spend time with family and friends, for those who find fatigue friendly activities we can do together. I am thankful for an understanding workplace that means I can keep doing a job I love. I am grateful to have a safe home filled with lovely things and a sofa to sink into on the days when fatigue is heavy. And for a furry friend who’s a big fan of naps herself.

Calico cat asleep with paw over face

Life rarely deals us the cards we would like. It’s okay to feel frustrated about that, to grieve for how life could have been. We don’t have to deny our feelings and pretend to be thrilled with whatever difficult situation we’ve been confronted with. But sooner or later we have to dust ourselves off and muster our courage to make the most of the life we have now. Which is why I will go back to managing my spoons, appreciating the things I am able to do. And whilst there may not be a magic spoon fairy there is a God who loves me, who could one day shower me with spoons.

Glad You’re Here

It was my 30th birthday last week. I’ve always had a complicated relationship with birthdays. I look forward to them when they’re a safe distance away and make plans to celebrate. But then the closer it comes the more I panic, the stronger the urge to cancel all my plans and spend the day with the duvet over my head. I remember how much I hate to be the centre of attention.

Thirty also feels like an intimidating milestone. I hoped to achieve more by this point, to have settled down with a family of my own. But I am still decidedly single and childless. And it’s hard to reflect back on a year that has held so many difficult and painful days. No matter how many times I am wished ‘happy’ on my birthday it’s unlikely to change the reality of mental illness.

However in spite of all my reservations and anxieties I had a lovely birthday. I cherished being able to spend time with friends. I was blessed with beautiful cards, messages and presents. I felt loved and valued.

Strings of bunting across a street

We are so used to celebrating birthdays that we forget what we’re celebrating. They can so easily become about being a particular age, an excuse to throw a party and receive gifts. But we’re actually celebrating the day of someone’s birth. We’re saying we’re glad you were born. We’re celebrating that life and the impact it’s had on our own. Ultimately we’re saying we’re glad you’re here.

It’s only looking back that I realise that message is one I desperately needed to hear. You see over the last twelve months there have been many days where I haven’t wanted to be here. Where life has felt like a burden too heavy for me to carry. Nights of trying to convince myself the world would be better off without me.

Depression hinders the part of your brain that helps you to experience feelings of connection. You can know that you are loved and people care, but you can’t feel it. It’s as though the threads that tie you to life have been cut one by one, until you feel alone in the dark. You are untethered, waiting to either cling onto something or let yourself drift away.

I have sat late at night and scribbled down the names of all the people who might miss me if I was gone. No matter how tenuous the links. I have wondered what people would say about me if I was not around to listen. Attempted to use these epitaphs as motivation to keep going. Choosing each day to stay for the people who love me.

I think I needed a birthday. Every card, message or gift a reminder that I am connected to other people, that I am loved. Lighting little beacons in the darkness, small sparks of hope. I needed the reminder from colleagues that I am a valued part of the team and not the failure I so often feel like. I needed the reminder from friends that I am more than my struggles, that they appreciate our friendship. I needed the reminder that life is worth celebrating.

It’s easy to leave it till too late to let the people we love know how special they are to us. Funerals can be full of words that were never said. Tragedies the trigger to impart value onto a life. We assume our unspoken sentiments are already known. That the other sees themselves the way we see them, feels our love. They know how glad we are that they’re around.

We don’t know who may need to hear today that we’re glad you’re here. That we’re grateful for all the work that goes into staying present in our lives, the battles they fight that we may never even know about. That we honour not just that day decades ago when they were born but every day since then. Each small step forward, living life true to themselves, embracing the unique irreplaceable parts of who they are.

Birthday or not if you’re reading this today I want you to know that you are loved and valued for who you are. The world needs you to keep showing up and being yourself. Whether this day finds you happy or sad, hurting or healed, broken or whole: you matter very much. And I’m glad you’re here.