The Things I Don’t Let You See

An edit of this post was published on The Mighty

I am lucky enough to be able to work part-time whilst managing my Chronic Illness. To do so means I have to keep a lot hidden from view, behind a more presentable mask. I do my best to smile through the bad days and to not let my symptoms show.

If you catch me at the right moment I might give you an honest response when you see me at work and ask “How are you?”. And I see confusion cloud your face when my answer doesn’t match up with what you were expecting. Sometimes I have to hold my tongue as you correct my response or offer your own assessment on how I am doing.

I can see how easy it is to imagine that the me you see here at work, extends beyond 5pm into my evenings and days off. That this put together functioning person continues into an active social life. To think that this elaborate façade is all there is to me.

But what I need you to understand is that you only see the very best of me. There is much more I will never let you see.

You don’t see the isolation, the days spent propped up on my bed desperately trying to refresh my weary body. When no amount of inactivity can make my body remember how to store energy. You won’t know just how boring and frustrating rest can be, when it is forced upon you. When your companions are head aches, muscle pain and the characters on the television. On those days you try not to open Facebook because seeing all those happy smiling faces leaves you feeling horribly alone. It is as though you are moving in slow motion, whilst the rest of the world is speeding past.

I don’t let you see the fear. How terrifying it is to have a body that is seemingly out of control. To not have any idea what the future holds and watch you life deviate from what you had planned. I get worried when each new thing I try to help, doesn’t make my symptoms better. Or panic when my memory fails and important things like my postcode slip out of my mind. You don’t see how afraid I am that there will come a day when I can no longer force my body to go into work. That this job may be another thing that my illness will take from me.

I don’t let you see the times when tears fill my eyes at my desk because my brain is so tired and so full of fog that the noise in the office feels like a special kind of torture. Or the days where I don’t leave this floor because stairs would just be a step too far. Or when I have had to stand up longer than my muscles could cope with and I sink into my chair, my body shaking from the effort of it. All the time knowing I’m going home to a flat that I will be too tired to clean and to food I don’t have the energy to cook.

And when you see me at a social event. You don’t see the careful planning that has gone into minimising the damage. How I’ve tried to ration my energy all day to save it for this. You won’t see the inevitable crash afterwards, because no amount of preparation ever prevents the fallout. You can’t know that I will be paying for this outing for days or even weeks to come. That sometimes the worry about how high the cost will be, can stop me from enjoying whatever it is I’m doing in the first place.

And I don’t expect you to know all this. I know there are many parts of your life that I also don’t see. I don’t know what your smile is covering.

But I would ask that you stop for a moment when I tell you how I’m doing. Before you dismiss my words and give your own opinion on my situation. Stop and remember that there are parts of my life that you don’t see. And I will try and remember the same for you.

Finding The Horizon

The thing that gets to you about living with Chronic Fatigue is not that every day is acutely bad, but rather that every day is the same. Each day I wake up exhausted, I battle through the day, to then go to bed with my head and body aching from the weight of fatigue. You can get overwhelmed when the days seem to stretch before you without end.

It’s like I’m swimming across the ocean, every day forcing my muscles to inch forward against the currents. But after so many days you become disorientated. What’s one more stroke against the vastness of the ocean? How do you know the shore is even still there when you can’t see it? What if this ocean never ends?

I think in the early months of this year I lost my sense of direction. I have been so consumed by the struggle of persevering that I didn’t notice how much of myself I was loosing along the way. Somewhere along the line, feeling unable to cope with my illness became feeling unable to cope with life. I didn’t want to swim any more.

My mind was having a hard time coping with the pressure of all those days swimming. I couldn’t see the horizon, all I could see was water. I didn’t know what I was swimming towards, or if I would ever reach it.

Where is the line between exhaustion and depression? I think sometimes when the weight of the days, months and years has become too much. Too much for a tired mind, one can slip into the other. I didn’t want to have to keep coping. I was frustrated with a body that I couldn’t control and a brain that was always full of fog. The gulf between who I was and who I wanted to be seemed ever wider. The storm was making the waves come up over my head, threatening to engulf me.

And it’s hard. It’s hard to keep trusting in a God who can do the miraculous but doesn’t always. It’s hard to sit in Christian settings and hear stories of amazing transformation and wonder if maybe God doesn’t love you as much as them.

I think the reality is that as I try and let go of some of the guilt I have been carrying there may first be anger that takes it’s place. If it isn’t my fault, than why me? If God is for me then why has life been so hard?

I know that God can calm the storms I come up against, like he did for the disciples all those years ago. But sometimes he asks us to trust that it’s enough that he’s simply in the boat. And that doesn’t always feel like enough.

April and May have been brighter so far. I have increased my medication for the first time in years. And whilst it has hurt my pride, it has brightened my world. Some more colour has come back into my life. I only realised how much had drained away once it had come back.

I am realising how important it will be for me to fix my eyes on the horizon. Especially on the days where the ocean, I am swimming in, seems endless.

My horizon has to be who God is and who I am in him. It is the truth of his promises, the enormity of his love and grace, the freedom that is mine in him. The vastness of his faithfulness stretches across as far as the eye can see.

And as I watch the horizon, I know that breakthrough will come. One day I will see land rising out of the skyline, rising up like freedom, magnificent and longed for. I won’t be swimming for ever. There will come a day when I will feel sand beneath my feet and my tired muscles will awaken with strength again.

Maybe I will find there was purpose in my swimming. Maybe I will have my own transformation tale to tell. Maybe you will too.

The Hardest Part of Acceptance

An edited version of this post was published on The Mighty

On the surface, I look like I have come to terms with my Chronic Illness diagnosis. I have learnt how to advocate for myself and found words to explain my illness to those around me. I have found some ways to cope and am adapting to live my life around it. However, there is one part of accepting my illness that I am still struggling with.

I am finding it hard to accept that it is not my fault.

 I know I am not supposed to blame myself.  I would never dream of blaming someone else for their illness. I would be the first to correct anyone else in my position. I know the blame I carry is neither rational or justified. So why can’t I shake the feeling of guilt?

Having a Chronic Illness is like being set up to fail, and I have never been very good at failure. A diagnosis doesn’t come with an instruction booklet. No one tells you how to manage your days, what to do and what not to do. But people around you expect you to have all the answers. It’s like being forced into a tournament, but no one will tell you what game you’re playing or what the rules are. Every time you think you’ve got it and start to believe you’re winning, the rules change and you’re back to square one. And it seems you are only competing against yourself, the better, healthier version of yourself,
trying to get back to who you used to be.

Yet even my best efforts cannot keep my symptoms at bay. A good day for me is still not as good as I or others would like it to be. I am learning to cope by trial and error. And a year post diagnosis it still feels like my errors are more noticeable than my successes.

I blame myself for the days I don’t succeed in managing, thinking “Surely by now I should have got to grips with this.” I feel responsible for every day off work, every cancelled plan, every time I hibernate and abandon communication. I feel guilty for the times I push myself too far and experience the inevitable crash. Or for the days when perhaps I could have pushed myself further but was too afraid of failing. I blame myself for every missed target at work. I am critical of every time the brain fog rips my concentration to shreds. There seems no one else to blame when every change or concession I make, yields no improvement. I am constantly comparing myself to everyone around me and finding myself lacking.

It doesn’t help that I have an illness that has become increasingly shrouded in controversy. Half the medical community still seem determined to treat Myalgic Encephalomyelitis as a mental illness. It is an illness still so poorly understood, under-researched and under-funded, despite the thousands of people affected. Whilst there have been some advances in research to show a biological basis for this illness, this is having little impact on local treatments options.

There are still many doctors who would dismiss me with “it’s all in your head”. My diagnosis came with a course of Cognitive Behaviour Therapy, and once that is finished there will be nothing else they can offer me. They believe my debilitating fatigue is a result of my body being de-conditioned, having too much rest and unhelpful thought patterns. I worry how many people in my life think the same. I am being taught not to trust what my body is telling me. It’s hard to know who I am supposed to be listening to.

In such a climate, it is difficult to validate your feelings and to ask for the help you need. I can fall into the trap of over analysing every feeling, to fear I am misinterpreting every ache and pain. I would give a great deal of money to swap bodies with someone for a day. I long to have someone else confirm my experience, to see my illness through their eyes. And I would love to remind myself of what healthy feels like, to experience a day
without fatigue. It has been so long now that the goal, of a healthy life, gets harder and harder to picture.

I don’t know what the road ahead looks like. The future has become hard to predict. Some days it feels like improvement is just around the next corner, other days it could be a million miles away.

The truth is I am so very tired. I know I am carrying a weight too heavy for my weary body. I cannot do anything about my diagnosis. But I think it is time to learn to lay down the burden of guilt and blame that is pulling me to the ground.

I know it won’t be as simple as saying a few significant words and leaving that suitcase of guilt behind me forever.  I know every time I set it down I can choose to pick it back up again. Maybe it will always be there, tempting me on the bad days. However, at those moments I will try to hold out kind and compassionate words to myself, rather than blame. I am human and flawed, I will make mistakes and get it wrong. But every fall will be a chance to get back up and try again.

Sunday’s Coming

I love Good Friday. Not only is it a great opportunity to remember Jesus’ death on the cross, and the sheer extravagance of his grace and mercy to us. But Good Friday to me perfectly captures the tension between being part of the world and the suffering that can involve, and seeing God’s perfect plans revealed.

Every year I am struck by what Good Friday meant to the disciples. It’s easy to gloss over the pain of this day, because we know what comes next. But for the disciples they watched Jesus die an agonising death. They did not understand that this was a crucial part of God’s redeeming plan. They must have thought that it was all over. Their teacher and saviour has been taken from them, when they were only just beginning to understand who he was. They went from performing incredible miracles to hiding in locked rooms, fearing for their lives. They were grieving and confused, scared and alone. It looked like the darkness of the world had won, that evil, corruption and betrayal had conquered love.

And I think I love this day because often we can find ourselves where the disciples are. In our own lives we can find ourselves in dark valleys where it seems like God’s plans have failed. We can feel seemingly alone with our pain and confusion, crying tears of fear and desperation. There are days when the night is dark and God’s goodness can be hard to see through the blackness that obscures our vision. And we only have to turn on the news to see the fruit of evil and hate in every corner of the world. Sometimes it can seem like the world is full of the cries of the suffering and afraid.

But the story does not end with Good Friday. I heard a great sermon at my church recently which quoted a story told by Tony Campolo. He was one of seven preachers preaching back to back on Good Friday. He thought he’d done a great job with his sermon and wasn’t expecting anyone else to top it. But then the next pastor cam up and had the congregation in uproar with just one line, “It’s Friday, but Sundays coming.” He said:

“It was Friday. The cynics were looking at the world and saying, ‘As things have been so they shall be. You can’t change anything in this world; you can’t change anything.’ But those cynics didn’t know it was only Friday. Sunday’s coming!”

 It was Friday! And on Friday those forces that oppress the poor and make the poor suffer were in control. But that was Friday! Sunday’s coming!

It was Friday, and on Friday Pilate thought he had washed his hands of a lot of trouble. The Pharisees were strutting around, laughing and poking each other in the ribs. They thought they were back in charge of things, but they didn’t know it was only Friday! Sunday’s coming”…

At the end of his message he just tipped his head back and yelled, “IT’S FRIDAY!” And all five hundred people in the church yelled back as one, “BUT SUNDAY’S COMING!”

And in that one phrase we have the good news of the gospel. We are living in the in-between, the time between Jesus’ resurrection and his coming again in glory. The Fridays of our lives may be difficult and dark. They may bring us to our knees and steal our hope and joy. But we know that Sunday is coming.

Good Friday reminds us that no matter how hopeless a situation may appear, we can’t always see what is right around the corner. Even if we feel our lives are a series of black Fridays, we mustn’t loose sight of the fact that Sunday will come when all will be made right. We may have to wait more than three days for it, but Sunday is coming, of that we can be sure.

When the Darkness stays Dark

I was singing a song the other week and one line stopped me in my tracks. It was Bethel’s song ‘You are Good’ and the line was ‘And in my darkest night, You shine as bright as day’. It was a moment where everyone around me seemed to be caught up in worship, singing louder in agreement. But as I stood there a little rebellious voice inside me was saying: do you God? Do you really shine as bright as day in our darkest nights? If you do why do they still feel so dark?

I know I am following the ‘Light of The World’ (John 8:12) and I have been set free from sin, free to walk in the light of his grace and truth for ever. I am not talking here about the darkness of sin, which God in his grace has dealt with and released us from.

But what about the other things that seemingly bring darkness into our lives, sickness, grief, heart ache and pain? What about those times when suffering darkens our skies?

I have heard a lot of before and after testimonies in my time. A lot of wonderful stories of transformation, showing what people’s life was like before they knew God and how dramatically it changed when he came into their life. These testimonies are all unique and inspiring. But I haven’t got a before and after testimony.

I have been a Christian for as long as I have understood what that means. I know that is an incredible privilege. Yet it also means that every difficult and painful thing that has happened in my life so far, has happened whilst I’ve been following God. My faith has not shielded me from the pain of this world.

My experience of walking with God hasn’t been him lighting up every dark night. I am not saying for a minute that I don’t believe he has been with me through every difficulty, carrying me when I stumble, eternally faithful and good. But my word, at the time the darkness still felt dark to me. There were times when I have felt so desperately lost and alone. Times where I have prayed and pleaded with God, only for him to seemingly stay silent. There were nights where I just did not know how to find the strength to keep going. Oh how I wish my faith had made those dark nights light. I would love my experience of God to have been him relieving the darkness of suffering, like a swift sun rise. But faith for me on those nights was more like hunting for stars in a dark sky where the clouds obscured all but one from view. There was a glimmer of hope but the darkness seemed so complete and overwhelming that I struggled to keep it in view.

Why do I care so much anyway? It’s only a line in a song, a song I never really liked very much before. Why is it still bothering me weeks later?

I think it’s because I know we have a tendency to blame Christians who are suffering for their pain. It’s not much of a leap to think that if God lights up every dark night, then him not doing so must be a lack of faith on our part. I still vividly remember the pain of being told that my depression was because I wasn’t a good enough Christian, I wasn’t praying or reading my bible enough.

Sometimes we get so uncomfortable with the darkness of suffering in our own or other’s lives that we convince ourselves it shouldn’t be there. It can be easier to believe that someone has brought the situation on themselves, than to accept that a loving God can and does allow difficult and painful things into our lives. We are quick to judge and quick to blame. We throw ourselves into earning our freedom, to tell ourselves if we just find the right combination of words or actions then we will be able to live permanently in the sunshine. If we’re honest even though we accept there will be suffering in this world, we expect God to give us some level of protection from it.

We forget that suffering can be the tool that shapes into who we need to be. We don’t realise that sometimes life needs to be stripped away before we can see God for who he is. God is not interested in our temporary happiness or success on earth, but in us reflecting his glory.

Having faith in the midst of trials is difficult. We want our faith to be a fire that always roars within us, for the whole world to see. But sometimes the fire grows dim. There will be days when all we have is a spark which we desperately shield against the harsh winds blowing in our faces. We are left warming our freezing hands around the last remaining embers, as the night deepens around us. There may be times when you wish the fire would die out altogether, because giving in to despair feels easier than clinging on to hope. Some days we only have enough light to see an inch in front of our feet and we fear we will trip any second.

Sometimes God doesn’t light up the night. And when the night has been long, we may struggle to muster the embers of our faith to expect that he ever will.

And maybe on those days the thing we need least in the world is judgement and condemnation. We need to hear that we have not fallen out of God’s hand or away from the reach of his love. Our suffering does not mean we have failed as Christians. It’s okay to hang onto faith by your finger nails on the dark days. It’s human to feel overwhelmed by suffering and to sometimes feel far from God. But we know better than to trust our feelings. We have to know we are neither forgotten or abandoned.

Every dark night must break eventually with the dawn. And maybe it won’t break today. It might be today those song lyrics get stuck in your throat, bringing tears to your eyes. Perhaps the fire of your faith has grown dim and the pain feels like the rawest most real part of you. Yet hope is still flickering in the darkness, feeding the embers of our faith. We know the darkness doesn’t win in the end.

The Words That Stay True

Life is hard right now. I am endlessly frustrated with being so exhausted all the time. Some weeks I am just done with life. Done with pushing through, done with covering over the fatigue with a smile, done with being told how well I’m doing when I feel like I’m falling apart at the seams. I am treading water at the moment, struggling to keep my head above the waves, forcing myself to keep going. I really want to be able to start swimming again, but sometimes it feels more like slowly drowning.

The future looks fairly uncertain right now. And I don’t know where I go from here. It might be that the breakthrough I’m hoping for is just around the corner, or it could be that this will be a long road. When you get given a diagnosis it doesn’t come with an instruction manual. No one tells you the right way to feel, the right thing to try, the right words to describe it to others. They don’t give you advice on how to cope with the crippling guilt for the people you let down or the hurdles you fall at. They don’t teach you how to be kind to yourself when your best is so far from being good enough. I don’t know what God wants me to do or what path he wants me to go down next.

And yet I have been through my fair share of dark patches in my life so far. I know how easy it can be, when the lights grow dim around you, to forget all you knew to be true in the sunshine. But if I have learnt anything from the rockier paths, it’s that there are some things that remain true regardless of the places you find yourself in. There are some words whose truth isn’t lost at the first hint of trouble.

God is good. Sure, it is much easier to shout of the goodness of God when all is well in the world and life is as it should be. We find it much easier to trust him when his goodness is seemingly reflected in our happy circumstances. But God can be good and still allow suffering into our lives. He is not concerned with our material wealth or even our momentary happiness, but our eternal future and spiritual health. If we declare God as good with shouts of ‘Oh Happy Day’ when we think of Him allowing Jesus to die on the cross, then we can’t abandon the claim the first time hardship hits our own life. We don’t know the greater purpose, we may never know.

I am known and loved by God. This is the one I have struggled with the most over the years. It is easy to allow my own low self esteem to spill into how I think God views me. But God created me, He knit me together, unique with my gifts and talents. He knows my flaws far better than I ever will, and yet He still loves me. I am loved not for what I have done or will do, but because I am His daughter. And that is an inheritance that sickness and suffering cannot take away.

God is in complete control. The sovereignty of God is a doctrine that appears to have become unpopular in modern Christianity. We are comfortable with saying God is in complete control of all the good things in our lives, every gift and blessing. But it is much harder to admit that God is in complete control of every suffering and hardship that enters our life. We see clearly in the book of Job that even the enemy cannot mess with our lives without God’s permission. God is in control of my illness. He could take it away in a blink of an eye and maybe tomorrow He will. But for now I have to trust that my life is in His control and His plans will prevail.

God is faithful. I am blessed that I can look back and see how God has already brought me through difficult days. I get to be a living breathing advertisement that God is in the business of redemption. He hasn’t stopped being faithful just because life has become painful. God’s faithfulness is innate within His character. He can’t be unfaithful to us. Our view of Him may have become clouded by our circumstances but we mustn’t for a moment think that means He has changed.

I’ll be honest these words don’t feel true right now. My heart wants to scream and shout at God and plead for change. I want to rage and storm or throw myself on the floor and give up. But I in my head I know these words are still true. My heart may betray me, it may tell me to despair and abandon hope, because God has forgotten me. But my head knows otherwise.

We put a lot of emphasis in churches on our hearts. We chase the emotional connection with God, we seek joy and peace, we long to feel connected and close to him. And these things are good to want. But there will be times in our lives when we feel none of these things. The emotional connection won’t come, life or illness will throw barriers to our peace and our joy. We will feel far from God and utterly abandoned. If we trust in our hearts alone then we will be lost.

It is then more than ever that we have to know these truths haven’t changed. We need these words to whisper as the darkness closes in around us. We need these words to end our psalms with, when we are out of tears, when we have cried out to God and still have no answer. We need to cling to them when the world tells us our faith is foolishness, that there is no God. Without these truths our faith is just feelings, as fickle and temporary as the wind. We will not weather the storms. Our emotions never have, or ever will be, a good judge of truth.

I feel many things right now. And sometimes these feelings weigh on me heavily like they will push me under. But the truth hasn’t changed. I have an anchor that I will cling to with all my might. It doesn’t make the pain any less but it lifts my eyes a little higher. It gives me the perspective I need to keep going. The night may be dark but the dawn will come. It always does.

Held

We all have threads that tie us to this world. Aspects that make up our identity and how we see ourselves. Maybe it’s a role you play like being a mother or father. Perhaps it’s a particular talent, creative or academic. Or it could be how you fill your time, your work or your passions. Each strand keeps us grounded, gives us a sense of belonging, makes us feel solid and fully present. The more threads we have, the harder it is for life to shake us, the harder it is for us to disconnect from the lives we are living.

I’ve realised recently that I’ve lost some of my threads since I became ill.

I have lost some of my creativity. I used to be constantly creating something, rarely without some sewing or knitting on the go. I had to be multi-tasking, watching a programme or film whilst stitching something new. But now my tired brain struggles to hold onto one thing at a time, I have some knitting abandoned on my desk because I was just too tired to keep going. I used to rarely be seen out without my camera. I loved immortalising moments, capturing and keeping those glimpses of time for ever. My revision breaks at University were spent in the local park photographing birds. But my camera and I haven’t left the flat together in several months.

I used to pride myself on my academic abilities. My brain could store vast quantities of information. I regularly got full marks in exams at school. I could concentrate for hours on end without a break, completing eight hour revision days. My brain was a well oiled machine and I thought it always would be. But now it has dulled and rusted. What I didn’t loose to the years of depression, I am loosing to the constant fog that fills my brain. Some days I forget something the instant the thought has finished forming in my mind. My work life is full of lists and scribbled notes. My home life is a constant nagging feeling that I’ve forgotten something important, only for it to come back to me hours later.

I miss the kind of friend I used to be able to be. I miss having the energy to go the extra mile, to do something thoughtful. So many ideas still float through my head but never make it to realisation. Some days I’m lucky if I find the energy to reply to a text message or email. I can be so self-absorbed, with the very effort of getting through each day, that I’m sure I miss what’s happening around me.

I used to take comfort in the fact that in spite of everything I was still good at my job. But January wasn’t a test that I passed with flying colours. I am not as fast at my job as I should be, and 12 months of hard work doesn’t seem to count for very much. And so this work thread is fraying at the edges.

This particular loss hit my hard. Or maybe it is simply the culmination of all these lost and fraying threads that is hitting me hard.

I know what it looks like when these threads get cut. I have felt the free-fall and the crash that comes after. I think I was expecting to fall again, maybe the part of me that is very tired and frustrated even wanted it.

A few weeks ago I got out of my city and took refuge with some lovely friends for the weekend. As I sat in their church I was reminded of a song that has been with me for years and is still one of the cheesiest songs I own. It is a song called ‘Held’ by Natalie Grant and was one I used to cling to, during the dark days of depression. The chorus goes like this:

“This is what it means to be held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved
And to know that the promise was
When everything fell we’d be held”

It was as though God was saying “You can’t fall, I’m holding you”. In that moment I realised that no matter how many threads I loose, how much of who I am seems to fall away, I will always land on His grace.

I am held. Held by the love of friends and family, who will stand by me no matter what. And held in the arms of my eternal Father who knows me far better than I know myself. Even if all the threads of this world are cut, I will still be his daughter and that is enough.

Since then have come days where I haven’t felt held or protected, where I have still felt so very tired and worn down. But if I have learnt anything in life it’s that things don’t stop being true just because you stop feeling them. Emotions are an unreliable judge of truth. The storms may be raging around me, but God’s got me. That may not make every day life any easier, but I can trust that this journey has a purpose and that I am neither lost nor forgotten.

“We are hard pressed on every side, but not crushed; perplexed but not in despair; persecuted, but not abandoned, struck down, but not destroyed”

2 Corinthians 4;8-9