One Spoon at a time - Living with Chronic illness
Living with a chronic condition can create a cycle of uncertainty and trauma with many other feelings in between. There are many articles and publications that talk about the link between trauma and chronic illness, with chronic conditions being explained as a causal effect of trauma, but the nature of chronic illness itself and the impact it has on our lives and relationships can create a recurrent trauma all of it’s own.
The great Unknown
One of that hardest things for many people suffering with chronic conditions is the length of time it can take to be diagnosed. Many spend years being fobbed off, disbelieved or misdiagnosed and when there is a diagnosis, even the explanations of likely treatment and expected symptoms can be vague. From the fear of having a ‘worse’ or terminal condition to the anxiety of not knowing what sensations and symptoms to attribute to a chronic diagnosis, not knowing can cause many periods of worry and sleepless nights.
Here we go again
The saga of having multiple or incorrect diagnoses can mean experiencing a wide range of medical tests either to determine a condition or to rule others out. Often this also means meeting a multitude of healthcare professionals and explaining over and over again our experience of being unwell. It can be an exhausting process both physically and emotionally. Travelling to and from appointments if we are suffering from pain and exhaustion can be unbearable and having to explain our medical history again and again can cause stress and tension as we desperately try to make sure no detail is left out . This can make us feel a huge sense of responsibility for the productiveness of appointments as we are desperately hopeful that this will be the one the gives us an answer and finally leads to some relief.
Is it all in my head?
Sometimes mental illness creates physical illness and sometimes physical illness creates mental illness so there are times when the line between which is which can feel blurred. When a chronic condition is hard to pinpoint or diagnose, it’s not uncommon for them to be dismissed as phantom conditions that the sufferer is either imagining or making up. This can make attending appointments even more stressful and unfortunately sometimes even humiliating. A patronising tone or a subtle raised eyebrow can make us feel stupid for seeking medical help and at worse even become a deterrent. Wondering if the relentless pain that keeps us up at night and the debilitating exhaustion that defeats our efforts to get on during the day is something that exists only in our mind can be a frightening and distressing thought and coupled with the frustration of not being taken seriously or believed, can create various degrees of anxiety and depression. When we then feel overwhelmed and find ourselves crying at appointments it can almost feel like we’ve let ourselves down because we fear that our tears give doctors reason to disbelieve or dismiss us.
Fear of The Flare
Living with the constant threat of a flare up can have a huge impact on our confidence even during times when we are well. ‘What if...?’ becomes a recurring question as we make choices about what activities and events may feel safe to participate in. Even if we have been feeling well for some time the memory of a time we have tried to do something either bold or mundane and found ourselves defeated by a flare can linger in our minds. Whether it’s a holiday, an exercise class, a family visit or a new job-the question of whether our body can and will cope often precedes the question of whether we would actually like to do it.
Missing Me
Pre-illness we may have been able to live a busy and active lifestyle. Maybe we were a gym bunny or a social butterfly, a highflying business person or a free spirited backpacker. Not these days. We may struggle with the basic tasks of washing and dressing, medication may hinder our ability to drive and a 9-5 becomes an impossible daily marathon. Big changes and accommodations may need to be made to our existing lifestyle and this can send our sense of identity into freefall. We may need to change our work hours or careers which can mean downsizing and downgrading parts of our lives. Hobbies we once enjoyed may need to be let go and our bodies can changes before our eyes as we are less active or fit then we once were through no fault of our own. These changes can create deep sadness and we may find that there is some mourning to do for the lost parts of our lives and the person we saw our self as.
In Sickness and in Health
When we are living with chronic illness there are often many other people living it with us. If we have partners it can affect our relationship as it can mean changes to our joint lifestyle and joint activities as well as making physical intimacy difficult. Body clocks can fall out of sync and each partners routine may begin to differ creating isolation and fractured communication. If our partner disbelieves or under appreciates the magnitude of our condition then we may experience this as an enormous rejection or betrayal. Sometimes resentment is felt on both sides, if we are ill our partner may not seem sympathetic enough and if our partner is ill we may feel frustrated, helpless or resentful. It can be a huge test of a couples resilience and commitment, sometimes it brings us closer and sometimes it exposes underlying cracks that we are no longer able to ignore.
Broken engagements
All the best laid plans f**ck up and often it is the times when we are looking forward to something the most that we find ourselves all out of spoons*. It can feel as if we are forever cancelling, rescheduling or cutting short our social engagements or professional commitments. Sometimes it even means missing out on things we’ve planned just for ourselves like the treat of a nice massage or a practical shopping trip for new trainers. Taking the kids paintballing may have seemed a fun thing to plan when we were well but then on the day we find ourselves in full flare and staring at their disappointed little faces. Weddings, anniversaries, birthdays and other special occasions are not immune to falling foul of a flare and sadly it’s not only our plans but sometimes our relationships with friends and family that we have to watch disintegrate from our sick beds. As well as the disappointment this can be incredibly isolating as we begin to have less contact with others and find ourselves spending more and more time alone. We may begin to feel like a huge disappointment to ourselves and those around us and experience feelings of guilt, failure and shame on a regular basis.
A Whole new world
Life as a Spoonie** can look very different to how it did before. It can feel like there is a huge amount of loss involved in our new life as very often there is. It can take time to adapt, make changes and learn to accept a new reality that may have different limitations to the ones we had before. Feelings of guilt and shame can very often mean we place huge amounts of pressure on ourselves to overcome, defeat or fly in the face of our illness and prove our diagnosis and everyone else wrong. There may be some adjusting to do both physically and mentally and acceptance may not come easily or quickly.
Making Hay
The Upside of being a spoonie is that sometimes we find our priorities shift in a positive direction. We start to value the simple and important things in life as we don’t have spoons to waste on sweating the small stuff. We may find that making adaptations to our working life works in our favour as we have more family time or find a more meaningful or enjoyable means of employment with a better work/life balance. And not taking our health and our time for granted can also mean that we end up achieving more as we learn to be better organised and prioritise or delegate our work with more efficiency. We may even find ourselves growing into more generous, understanding and empathic people with more tolerance for those around us. Every Spoon has a silver lining.
Spoon Talk
Sometimes Counselling is a useful way of working through the minefield of our thoughts and emotions during chronic illness. Spoons are very precious and we may not want or be able to use them getting to or from Counselling sessions which is why Online counselling is a great option. To find out more about how you can see me for online sessions check out my online counselling page at @12
*‘’A growing number of people with stamina difficulties, such as those with ME, fibromyalgia, Ehlers Danlos syndrome and mental health problems, use spoons to quantify how they are feeling on a given day. It's not really possible to measure energy levels scientifically but this unit of measurement - numbers of spoons - is a fun explainer.’’ BBC.co.uk
**‘’The term spoonie is sometimes used to refer to a person with a chronic illness that can be explained with the spoon theory.’’ Wikipedia
‘’Origin. The term spoons was coined by Christine Miserandino in 2003 in her essay "The Spoon Theory".’’ Wikipedia
The great Unknown
One of that hardest things for many people suffering with chronic conditions is the length of time it can take to be diagnosed. Many spend years being fobbed off, disbelieved or misdiagnosed and when there is a diagnosis, even the explanations of likely treatment and expected symptoms can be vague. From the fear of having a ‘worse’ or terminal condition to the anxiety of not knowing what sensations and symptoms to attribute to a chronic diagnosis, not knowing can cause many periods of worry and sleepless nights.
Here we go again
The saga of having multiple or incorrect diagnoses can mean experiencing a wide range of medical tests either to determine a condition or to rule others out. Often this also means meeting a multitude of healthcare professionals and explaining over and over again our experience of being unwell. It can be an exhausting process both physically and emotionally. Travelling to and from appointments if we are suffering from pain and exhaustion can be unbearable and having to explain our medical history again and again can cause stress and tension as we desperately try to make sure no detail is left out . This can make us feel a huge sense of responsibility for the productiveness of appointments as we are desperately hopeful that this will be the one the gives us an answer and finally leads to some relief.
Is it all in my head?
Sometimes mental illness creates physical illness and sometimes physical illness creates mental illness so there are times when the line between which is which can feel blurred. When a chronic condition is hard to pinpoint or diagnose, it’s not uncommon for them to be dismissed as phantom conditions that the sufferer is either imagining or making up. This can make attending appointments even more stressful and unfortunately sometimes even humiliating. A patronising tone or a subtle raised eyebrow can make us feel stupid for seeking medical help and at worse even become a deterrent. Wondering if the relentless pain that keeps us up at night and the debilitating exhaustion that defeats our efforts to get on during the day is something that exists only in our mind can be a frightening and distressing thought and coupled with the frustration of not being taken seriously or believed, can create various degrees of anxiety and depression. When we then feel overwhelmed and find ourselves crying at appointments it can almost feel like we’ve let ourselves down because we fear that our tears give doctors reason to disbelieve or dismiss us.
Fear of The Flare
Living with the constant threat of a flare up can have a huge impact on our confidence even during times when we are well. ‘What if...?’ becomes a recurring question as we make choices about what activities and events may feel safe to participate in. Even if we have been feeling well for some time the memory of a time we have tried to do something either bold or mundane and found ourselves defeated by a flare can linger in our minds. Whether it’s a holiday, an exercise class, a family visit or a new job-the question of whether our body can and will cope often precedes the question of whether we would actually like to do it.
Missing Me
Pre-illness we may have been able to live a busy and active lifestyle. Maybe we were a gym bunny or a social butterfly, a highflying business person or a free spirited backpacker. Not these days. We may struggle with the basic tasks of washing and dressing, medication may hinder our ability to drive and a 9-5 becomes an impossible daily marathon. Big changes and accommodations may need to be made to our existing lifestyle and this can send our sense of identity into freefall. We may need to change our work hours or careers which can mean downsizing and downgrading parts of our lives. Hobbies we once enjoyed may need to be let go and our bodies can changes before our eyes as we are less active or fit then we once were through no fault of our own. These changes can create deep sadness and we may find that there is some mourning to do for the lost parts of our lives and the person we saw our self as.
In Sickness and in Health
When we are living with chronic illness there are often many other people living it with us. If we have partners it can affect our relationship as it can mean changes to our joint lifestyle and joint activities as well as making physical intimacy difficult. Body clocks can fall out of sync and each partners routine may begin to differ creating isolation and fractured communication. If our partner disbelieves or under appreciates the magnitude of our condition then we may experience this as an enormous rejection or betrayal. Sometimes resentment is felt on both sides, if we are ill our partner may not seem sympathetic enough and if our partner is ill we may feel frustrated, helpless or resentful. It can be a huge test of a couples resilience and commitment, sometimes it brings us closer and sometimes it exposes underlying cracks that we are no longer able to ignore.
Broken engagements
All the best laid plans f**ck up and often it is the times when we are looking forward to something the most that we find ourselves all out of spoons*. It can feel as if we are forever cancelling, rescheduling or cutting short our social engagements or professional commitments. Sometimes it even means missing out on things we’ve planned just for ourselves like the treat of a nice massage or a practical shopping trip for new trainers. Taking the kids paintballing may have seemed a fun thing to plan when we were well but then on the day we find ourselves in full flare and staring at their disappointed little faces. Weddings, anniversaries, birthdays and other special occasions are not immune to falling foul of a flare and sadly it’s not only our plans but sometimes our relationships with friends and family that we have to watch disintegrate from our sick beds. As well as the disappointment this can be incredibly isolating as we begin to have less contact with others and find ourselves spending more and more time alone. We may begin to feel like a huge disappointment to ourselves and those around us and experience feelings of guilt, failure and shame on a regular basis.
A Whole new world
Life as a Spoonie** can look very different to how it did before. It can feel like there is a huge amount of loss involved in our new life as very often there is. It can take time to adapt, make changes and learn to accept a new reality that may have different limitations to the ones we had before. Feelings of guilt and shame can very often mean we place huge amounts of pressure on ourselves to overcome, defeat or fly in the face of our illness and prove our diagnosis and everyone else wrong. There may be some adjusting to do both physically and mentally and acceptance may not come easily or quickly.
Making Hay
The Upside of being a spoonie is that sometimes we find our priorities shift in a positive direction. We start to value the simple and important things in life as we don’t have spoons to waste on sweating the small stuff. We may find that making adaptations to our working life works in our favour as we have more family time or find a more meaningful or enjoyable means of employment with a better work/life balance. And not taking our health and our time for granted can also mean that we end up achieving more as we learn to be better organised and prioritise or delegate our work with more efficiency. We may even find ourselves growing into more generous, understanding and empathic people with more tolerance for those around us. Every Spoon has a silver lining.
Spoon Talk
Sometimes Counselling is a useful way of working through the minefield of our thoughts and emotions during chronic illness. Spoons are very precious and we may not want or be able to use them getting to or from Counselling sessions which is why Online counselling is a great option. To find out more about how you can see me for online sessions check out my online counselling page at @12
*‘’A growing number of people with stamina difficulties, such as those with ME, fibromyalgia, Ehlers Danlos syndrome and mental health problems, use spoons to quantify how they are feeling on a given day. It's not really possible to measure energy levels scientifically but this unit of measurement - numbers of spoons - is a fun explainer.’’ BBC.co.uk
**‘’The term spoonie is sometimes used to refer to a person with a chronic illness that can be explained with the spoon theory.’’ Wikipedia
‘’Origin. The term spoons was coined by Christine Miserandino in 2003 in her essay "The Spoon Theory".’’ Wikipedia
Comments
Post a Comment