How To Cope When You Are Overwhelmed By Your Chronic Illness Diagnosis

How To Cope When You Are Overwhelmed By Your Chronic Illness Diagnosis

Why do you feel overwhelmed when you have a chronic health condition

Dealing with a chronic illness diagnosis can be overwhelming, leaving you feeling lost, frustrated, and even powerless. Chronic illnesses can cause physical and emotional challenges, which may lead to you feeling overwhelmed and even suffer burnout over time.

Coping with a chronic illness diagnosis is an ongoing process, and it’s essential to learn how to manage your emotions effectively and think about how you react and respond to the curve balls life throws at you.

Even after you’ve accepted your diagnosis, the uncertainty about your future and the unpredictability of day-to-day life is a lot to deal with. It doesn’t take much to push someone with a chronic illness into overwhelm and burnout. Illness can overwhelm you socially, cognitively, emotionally, and physically — taking a massive toll.

Maybe most days you manage okay, but there are times when you may go from being overwhelmed-but-functioning to completely floored by your condition and everything else life throws at you.

 

Things that may cause overwhelm when you have a chronic illness

Overwhelming factors may be big or small, they may happen all at once or creep up on you over time:

  • A new diagnosis
  • A change in symptoms
  • starting, stopping or changing medications
  • Visiting a new doctor
  • a set back to treatment
  • really long waiting times for appointments
  • Losing your ability to carry out certain tasks
  • chronic pain
  • financial stress
  • financial stress
  • losing a job or having to change job/ profession
  • having to cancel plans

I know first hand how hard it is to mange appointments, symptoms, therapies, eat a healthy diet, get as much physical activity as you can, avoid negative coping mechanisms like alcohol, exploring the right stress-relief activities like meditation, keep up to date with new treatments or simply ask for help when you need it and stay in touch with family and friends. It’s a lot – then managing it all for my kids added another layer of overwhelm to the mix.

Doing it ALL can be really overwhelming.

As a life coach, I’m here to help you navigate through the stages of burnout and offer tips on how to cope when you feel overwhelmed by your chronic illness diagnosis.

 

Let’s understand acute vs. chronic stress

It’s essential to understand the difference between acute stress and chronic stress.

Acute stress is a type of stress that happens in response to an immediate threat or danger. For example, if you’re walking in the park and a dog starts chasing you, your body will go into “fight or flight” mode and release stress hormones like adrenaline and cortisol. This type of stress is helpful in the short term because it helps you react quickly to danger.

Chronic stress, on the other hand, is a type of stress that happens over a long period of time, often months or years. This type of stress can be caused by ongoing problems like financial difficulties, relationship issues, or work stress or a chronic health problem. Chronic stress can be harmful to your health because it can lead to high levels of stress hormones in your body over an extended period of time. This can cause negative health effects like anxiety, depression, heart disease, and digestive problems. A double whammy. Your stress about your health over time and if chronic can further affect your health!

 

The Stages of Overwhelm

This graphic shows really well.  As the demands and pressures increase, so does performance, but there is a sweet spot where you are performing at your best.  Some people describe this as flow state.

As demand and pressures continue to increase over time performance can decrease and you can slip into overload or even burnout.

It is so easy to tip from being in you best performance zone in to feeling overwhelmed by your chronic illness.  One minute you feel like you are winning, you have it all going on.  Spinning all the plates.  The next there are just too many plates to keep spinning.  You haven’t got the energy to keep them all going.

There is a big difference between functional overload, where you are overwhelmed but functioning and dysfunctional overload, where you just feel floored by everything; your condition, life, all the things.  As you start to move down the curve, the demands and pressures are still there, maybe they are increasing or maybe there is just no let up from those demands, you will move from functional overload into dysfunctional overload and this is where burnout can occur.

Once you know where you are on this curve then you are better placed to apply interventions to help you perform at a sustainable level.

 

Symptoms can be wake up calls

When I started work as a teacher full time my usual coping mechanisms just didn’t work.  After a long summer break the autumn term usually went OK, I could keep going pretty well but was often ill over the Christmas break as my body was screaming at me with symptoms by the time we broke for the Christmas holidays. Despite resting, I would always start the Spring term tired and it felt like a hard slog to get to half term. This is when I started getting more and more illnesses.

I felt like I was always driving around with my body’s check engine light on, convincing myself that I would be OK.

I distinctly remember having two or three weeks off of work for things that the GP could never put his finger on ‘glandular fever like illness’ for example or ‘fatigue’.  I was bloody exhausted all the time.  I would rest, reset and go again. Constantly swinging from one end of the curve to another and each time reaching overload more quickly.  What I was doing every time was ignoring the symptoms until I got sick or was completely overwhelmed by my symptoms and couldn’t carry on.

It won’t come as a surprise to you that I eventually left the teaching profession.  A combination of diagnoses, fatigue, ever increasing and more serious symptoms and overwhelm.

It was way after I left work, was diagnosed with multiple chronic health conditions and had settled into life as a disabled mum that a big shift came in the way I lived and experienced my symptoms, when I started to see them not as an enemy to fight or override but as signals alerting me to overstretch.

If a fuel warning light comes on on a car you don’t just drive it regardless. You stop and refuel. We need to take a similar approach to our symptoms and energy.

Once we learn to listen to our body, then we can develop better ways of working towards better performance. This is so important particularly if you have a chronic health condition. Knowing what is normal for you, what symptoms and signs come when you are pushing too much and slipping into overwhelm really help you to recognise them. To stop.  And then choose what you want to do next.  Do you want to keep pushing or is there another choice?

There was wisdom in my body and what it was telling me. Once I started to listen to it overwhelm started to lose its grip.

 

Signs of Overwhelm

It’s important to recognise the signs of overwhelm so that you can take steps to address them. Here are some common signs of long term chronic stress, I have split them into physical, emotional and behavioural symptoms –

Physical:

  • Tired and drained
  • Low immunity
  • Changes in appetite
  • Changes in sleep habits
  • Persistent headaches or dizziness
  • Muscle pain and tension
  • Stomach problems
  • Sexual problems

Emotional:

  • Feeling helpless
  • Feeling detached from life
  • Loss of motivation
  • Sense of failure/ self doubt
  • Decreased satisfaction in life
  • Increased negative outlook
  • Feeling overwhelmed and avoiding small stressors that will usually feel manageable

Behavioural:

  • Withdrawn from responsibilities
  • Isolated from others
  • Procrastinating
  • Getting agitated with others
  • Avoiding work
  • Lack of concentration
  • Problems switching off even when exhausted
  • Increased dependence on addictive behaviours such as smoking, drinking or over eating

 

Coping with Overwhelm from your chronic illness

If you’re feeling overwhelmed or experiencing burnout, there are several things you can do to help manage your emotions and reactions. All of these things are great when you are feeling overwhelmed:

  1. Practice self-care: Get enough sleep, eating a healthy diet, and exercising regularly. These self-care practices can help reduce stress and promote a sense of well-being.
  2. Seek support: Reach out to friends and family members for support, or consider joining a support group for people with similar chronic illnesses.  Hey, even hire a coach!
  3. Manage your expectations: Set realistic expectations for yourself, and don’t try to do too much at once. Break tasks down into smaller, more manageable pieces.
  4. Practice mindfulness: Try mindfulness techniques such as meditation to help reduce stress and anxiety and help you to be more present
  5. Rest: Take breaks when you need them. Allow yourself time to rest and recharge.
  6. Practice gratitude: Focus on the things you’re grateful for in your life, even if they’re small. This can help shift your focus from negative emotions to positive ones.
  7. Focus on your strengths: this helps you to build inner resilience, it will help to lower stress levels.
  8. Breathe: from simple breathwork techniques to more focussed conscious connected breathwork – this can help to lower cortisol levels and help you feel less stress.
  9. Journal your feelings: Use a journal to break down all the overwhelming thoughts and feelings.  It is really cathartic to get it all out onto a page.
  10. Mind map: all the things that you have to do, like journaling it helps to get it all out onto a page from there you can work out what is important, what isn’t and if anything can be ditched or delegated.
  11. Do one thing: When things feel overwhelming start small, you don’t have to conquer the mountain today just take the next logical step.
  12. Get organised: Keep all of your medical appointment letters, prescriptions and important documents in one place. And keep a diary… appointments are cancelled and changed, with everything in one place  you can stay on track.

 

Can you think of which ones you could introduce as a regular practice to prevent overwhelm in the first place?

Imagine taking regular rests, having a great support network, a positive mindset born out a daily gratitude and journaling practice?  Arriving at your medical appointments super chilled and organised with a binder full of all your reports and letters, just in case.  Feels better already, right?

 

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I have three children, all affected differently with elements of Hypermobility Spectrum disorder (HSD), Hypermobile Ehlers-Danlos syndrome (hEDS) and Charcot Marie Tooth disease (CMT) and new to the ever-growing list this year is Chronic Fatigue syndrome (CFS/ME).  As well as having hEDS and CMT myself.

We would describe ourselves as a happy family, we laugh a lot, we always make the best of everything life throws at us… a first glance I look like any other parent standing in the playground to collect their children at the end of the day.  What you don’t see is that managing our lives takes effort, immense effort.

On the surface I hold it all together, I smile, make small talk with friends, make appointments, organise tutors, go for coffee, I’m a good wife, a good mum, a good friend but underneath the facade the cracks are there.

This last 12 months have seen our son decline dramatically with his health, particularly fatigue.  To the point that we have had no choice but to initiate home education for him.  It has been a bloody slog and although he has improved over the last six months when he wakes every morning I still do not know how he will be.  Will he wake? Will he function today? Will he cope with his tutor session?  When he is awake I’m constantly checking that he hasn’t fallen asleep, has taken his meds? Is moving enough? Is he overdoing things? Has he done any strengthening work?  Has he eaten?  Has he drunk enough water?

I must admit I’ve been running at a heightened state of anxiety surrounding the kids for months. My flight-or-flight response programmed constantly to on.  I second guess every decision that I make for our family? How can I best care for them? Am I getting it right, Am I asking to see the right doctors? Making the right decisions about school? Pushing them enough? Too little?

But I smile.

Quite honestly it’s like having a toddler at home again, that’s how much thought, time and effort goes into managing my son day-to-day.  It is constant and you can’t relax for a minute but it has to be like this if we are going to continue to see the baby steps he is taking in the right direction.

I have two more children.  To ferry to clubs, to take to and from school (one still part-time because we are always managing her fatigue so that she doesn’t tip over the edge into the realms of tiredness and meltdowns) plus their hospital appointments, school meetings, phone calls, cooking, cleaning.  Life.

My smile shows cracks.

This week I’m tired, it’s the end of a long-term and it’s showing in our house, my dad has just had major stomach surgery so we’ve had two weeks of extra worry and hospital visiting.  My son has a bad week, like his illness is throwing all our hard work to get him well straight back in our faces.  We’ve also had school reports, teacher meetings, swimming, dancing, Choi Kwan Do grading, birthday parties and god forbid a night in at a friend’s house.  My pain is way up.  To the point that relaxing my feet at night makes we want to sob and I prop them on pillows in an attempt to sleep.  Every time I roll over in bed I wake as something partially dislocates.  I’ve also subluxated a bone in my spine for the first time, and it bloody hurts.

The constant drip fed worry makes you feel like you are forever under attack and the long-term activation of the stress-response system and the subsequent overexposure to cortisol and other stress hormones is disrupting all my bodies processes.

The make up is not working.

A few weeks ago I had a conversation with a friend, she has a son with Type One Diabetes.  On the one hand our experiences are totally different, diabetes looks completely different on a daily basis to what we deal with.  But on the other hand we can relate to each other because caring for our kids, the fights, the worries, the sleepless nights, definitely stir the same emotions in us as humans, no matter what the illness. When her son was diagnosed she remembers being warned about burnout.  The professionals taking to her were referring to a patient with diabetes getting burnout, having to care for themselves every day, day in and day out.  To be alert, to watch for it.

Burnout.

Then it hits me, these cracks are the first signs of burnout but not because I’m the patient (although I kind of am too) but the caregiver.  Everything rests firmly on my shoulders and just lately it’s all been a bit much.  When I look closer the signs that I’m not coping have been there for quite a while,  I’ve been painting over the cracks each day as usual and pretending that they are not there.  Push through, push through.  This is my pattern, I should actually know better.

Always, the first step to change is recognising what’s wrong, step one complete.  Now I have I have to take the steps to put it right.

My husband often tells to me to stop putting myself last because if I don’t look after me who will look after everyone else.

He’s right… as always.

 

My 8 Steps To Recognising Burnout and How To Make It Better

Problem: Tiredness and fatigue

I am so tired I can barely put one foot in front of the other this last couple of weeks.  I just need everyone to do the normal household things that they are expected to do.  The fact that they are not managing to put

their plates in the dishwasher or hang their towels up after a bath makes me want to cry, I just haven’t got any extra energy left for these things.

Fix: First rest, it’s the start of the summer holidays so no timetables, no tutors, no school runs.  I don’t have to set the alarm clock each morning.  This will most likely fix itself over the summer but I will need to watch out carefully when we get back to the grind in September so that it doesn’t happen again.  I’m going to get the kids involved in little chores like putting their own washing away, clearing the table after dinner etc…

Problem: Lack of sleep or irregular sleep

I’m either shattered and I can’t get to sleep or I get off to sleep then wake in pain as I roll over in bed.  Then when the alarm goes off at 6:30 I’m exhausted and my eyes are barely open as I drag myself downstairs to make sandwiches.

Fix: Regular betimes, no tea after 8pm, to massage my legs before bed to limit the cramp that wakes me all – night – long.  Slowly strengthen, strengthen, strengthen.

Problem: Nutrition

I’m not hungry, my appetite is way down.  For lunch I’m forcing myself to eat toast and jam (which I know will not stabilise my blood sugar) but it is the only thing I can choke down.  I’m craving carbs.  I’m not drinking enough water or having enough salt.  I’m also no taking my bowel meds regularly enough and that is affecting my urinary system.

Fix:  Put in an online shopping order straight away.  Salty snacks a plenty.  I am now cooking nice home cooked meals for me as well as the kids, no take away’s when I feel rubbish just because they are easy.  Every morning I’m filling a large water bottle with a litre of water so that I can clearly see how much I am drinking and aim for two each day.  Take my meds, every day.

Problem: Exercise

For months I’ve known that I should exercise more, but I just don’t have the time, the energy or the inclination.  I haven’t been to my pilates class since my son got really sick in January.  I’ve being trying to keep up with everything at home, really trying, but the last two weeks I haven’t even managed that.  Just the thought of walking the poor dog makes me want to sob.

Fix: In September when the new term starts I am going to plan in my pilates sessions before my sons tutors, cleaning or ironing.  As of Monday the home exercise programme starts again.

Problem: Mood

This week I feel furious one minute, sad and helpless the next.  I don’t actually know whether to laugh or cry sometimes.  I’m finding myself turn up and later at the end of the school day to collect the children so that I don’t have to talk to anyone, or listen to everyone else lives and worries (they havent got a clue).  I’m snapping at the kids and I never snap at the kids.

Fix: Take a breath, take some time.  Read a book (for the first time in about a year) because it takes my mind somewhere else for a while.  Talk (to my husband) just saying how I feel even if I can’t suddenly magic everything better it always makes me feel ten times better, keeping everything to myself so that I don’t worry or burden him is not the answer.

Problem: I am the go-to caregiver. Always.

For my kids I am always the first port of call as my husband works super long hours to support us.  Caring for my son lately has been 24/7 and getting him well is even more hard work than when he was super sick, literally planning his day and thinking for him.  Finding the balance between helping him to get well and doing too much for him is tough and changes daily.  I like to be in control, to have a plan and you can’t be in control of an illness like CFS, it kills me.  I’m also the go to for my parents.  Mum stayed here while dad was in hospital to visit more easily but I found that I took on extra visiting to lighten the load from her.  My door is always open, always, to friends, family, the world and his wife really.  While the distraction is often welcomed over time I think it has added to everything.

Fix: First to say out loud that this is tough.  I may not be able to change everything but talking helps.   Most of all to stop beating myself up about everything, I can’t change everything and I’m doing my best.  To say no sometimes, you can’t do everything for everyone all of the time and doing everything for the kids is often counterproductive in the long run, they have to be their own confident, independent selves.

Problem: Pain

Pain is at an all time high, my autonomic system is way out of whack and then the migraines start coming.  This always happens.  When the migraines come I have no choice but to stop.  I think that it’s my body’s way of telling me enough already.

Fix: Simple, rest and then pace.  The summer will be laid back with lots of easy things like the movies or the theatre with the kids.  Plus more time for the simple things.

Problem: Social Life

Apart from a night in at a friend’s house I can’t remember the last time I met a friend for dinner or a movie or had a date night with my hubby.  I often go to the local Italian restaurant with the kids but that is in an attempt to get my son out of the house for an hour without exhausting him too much, and that is still a work in progress.

Fix: Babysitters are a problem, as always when you have three children and everyone has busy lives.  So this week we will take them all with us for an anniversary meal at a lovely restaurant.  Fifteen years, where did that time go?!? Date night might look a little different but dressing up and going our will do us all good and if my son can manage three courses without falling asleep it will be a huge step forward and well worth celebrating.

What are the signs that tell you you’re overdoing it? have you found any little things that help? Please share your ideas in the comments below…  they may just help 😉

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