The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real.

From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar.

But, do you know everything there is to know about EDS?

When I was diagnosed I remember the Aha moments kept coming as more and more things from my past slotted into the definition of my shiny new diagnosis… like my narrow arched palate and local anaesthetic never working!

Please share far and wide!

Let’s make people aware that having EDS is far more than soft skin or loose hypermobile joints.

 
 
A is for adrenaline
 
B is for bowel and bladder
 
C is for connective tissue
 
D is for dislocation
 
E is for elastic, velvety skin
 
F is for fatigue
 
G is for genetics
 
H is for handle with care
 
I is for invisible illness
 
J is for joint hypermobility
 
K is for kyphoscoliosis
 
L is for local anaesthetic
 
M is for mast cells
 
N is for narrow palate
 
O is for orthostatic intolerance (POTS)
 
P is for pain
Q is for questions
 
R is for relaxin
 
S is for slipping rib syndrome
 
T is for TMJ
 
U is for unexplained stretch marks
 
V is for vascular EDS
 
W is for widespread symptoms
 
X is for x-rays
 
Y is for years to diagnosis
 
Z is for zebra
 
 
Do you have a loved one with EDS?
 
Share this post and get their opinion…

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Join The Community

The Thrive Tribe is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness, that you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

 

Acceptance – Why it is so important when you have a chronic illness?

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person’s agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head around the cards that you have been dealt.

For many people who are dealing with a chronic illness the term acceptance can be tricky. If people are told by others to just accept their condition they can feel like they are being told to suck it up or to stop complaining. Which in fact if you think about it is the opposite of acceptance. These well wishers may be trying to help, but acceptance is a process that doesn’t just happen because someone suggests that it may be a good idea.

True acceptance involves, recognising your experience, accepting your reactions to it and working through them until you reach a point that you no longer want to fight or change the situation.  It’s alright to be angry, sad, or hurt by that reality, but the goal is to acknowledge the fact that there are some parts of your situation that you cannot change.

 

image of lady with a tear running down her face as she is processing the emotions involved in her chronic illness diagnosis

 

Accepting your condition

For me acceptance has been a journey that I have walked for nearly 20 years. When I was first diagnosed with CMT my life was completely turned upside down. The young successful adult that I had fought to become was no more.  I had a new baby, who I loved with all my heart, but my career was stolen by my dwindling mobility, I was struggling more than I ever had in my life.

I had two surgeries in quick succession and more planned. I was coming to terms with the fact that I had an incurable neuromuscular disease that was progressive with a 50% chance of passing it on to my child; coupled with the fact that the things that I had worked so hard for and that I felt defined my identity were being taken away from me.

A year or so down the line I thought that I had accepted this condition. What I could actually do was talk about the science behind it all with ease but I had not dealt with the emotions of it all and was still fighting myself to be an able bodied young woman and beating myself up about the career I didn’t have anymore.

It took two years, that and the third surgery to be successful for me to finally begin to come to terms with the diagnosis and accept what it meant for me, for my future and my now growing family.

Throughout this time I learnt to deal with the emotions that I felt, be it sadness, anger or anxiety by meeting them head on. In doing this I became more resilient and emotionally tough by allowing myself to feel what I was feeling helped me to move through it, and allowed me to turn my attention towards more meaningful things.

 

Accepting the implications for your future

Accepting the implications that my condition would have on my future was tough. I had it all planned out in my head – I had a first degree, had recently married the love of my life and we had brought out first home together, I was working hard in a job I loved and had been promoted.  Along came our first child and I envisaged working hard and having long summers away as a family. 

My body didn’t get the memo.  As it slowly fell apart so did my hopes and dreams for the future. I was unable to work and I began to question everything – if I wasn’t a teacher? who was I? 

What this actually gave me was a chance to step back and reflect on who I was and what I really wanted from my life. The inner work that is so important and often overlooked while we are pounding the treadmill, trying to have it all.  

The nature of chronic illness is that it is ongoing, and in many cases degenerative or permanent. Which means that your health can change at any time. So the process of acceptance can change over time as new symptoms may present and conditions progress further. Being resilient helps you to cope with these unforeseen circumstances.

When I had further diagnoses’ of EDS and PoTS ten years after the first, it was evident at this point that I had done the work. The process of acceptance that I had gone through before was replaced this time by relief and self-compassion. I was able to bounce back from these circumstances but also had a positive outlook throughout. I had learnt not just to handle the situation but how to.

 

Accepting the limitations that are now placed on your life or relationship

One of the hardest things has been to accept that I can’t do everything, that I have to manage my chronic illness’ as if they were a full time job, in order to lead a more normal life. To know that this has to happen, to admit that some things are hard for me and to know that if I try to do everything I will become ill, have more pain or not function for days.

I am constantly walking tightrope, if I balance carefully I may reach the other side unharmed, rush, plan poorly and I will most likely topple and pay for it later.

So, I have learnt to balance my life, management is the only option there is no cure or magic pill for my conditions.  For most long term conditions, even with medical treatments management is key to living well long term.

This has become so much easier for me as I have truly accepted my conditions and the impact that they have and will always have on my life. I recognised that I had little to no control over certain elements of my health made the decision to stop struggling against those. Validating, rather than minimising or rejecting my experience. I now honestly assess my condition, my options and my choices and place my time and energy on the things that I can control rather than those that I can not. And, I enjoy the freedom that comes from being in that position.

I slowly learnt that there is a time and a place to fight my illness but it is not 24 hours a day 7 days a week. Dropping the moment to moment struggle has been surprisingly freeing. I no longer fight constantly for it to be different, which has given me so much more energy to do the things that I love to do like meet friends for coffee or spend quality time with the kids.

I now make choices about my life rather than feeling like all the choices have been made for me.

Acceptance has given me back that control.

 

happy family enjoying time together after a chronic illness diagnosis

 

 

 

 

12 things that you can do today to help you to accept your chronic illness?

  1. Start where you are at right now – this is your journey.
  2. Accept that this is a process and due to the nature of chronic illness, (eg:- new symptoms or progression), the process of acceptance may change over time.
  3. Acknowledging that even though it’s not fair that you are ill, that it has happened, and you need to work with where you are.  Deal with your emotions head on.
  4. Avoid focussing on the good old days all the time, past is past – stop obsessing over “what if’s” and accept that this is the reality and you need to move on from here.
  5. Accepting that some of your past goals or plans may no longer be realistic, and allowing yourself to mourn this loss.
  6. Stop searching for a cure if evidence suggests one does not exist, and focus on managing & controlling your symptoms.
  7. Denial will not make your illness go away – you can accept that you do need treatment if your disease calls for it.
  8. Accepting that no matter how well you stick to your treatment, you do not have full control over your condition.
  9. Learn to adapt to adapt to uncertainty – flexibility will be your friend – have a destination but know that there are many roads that may get you there.
  10. Know that you are more than your illness – make plans, have fun, don’t compare yourself to others or your past self, grow.
  11. Accept that you may never have a satisfying answer to why this happened.
  12. Live.

Eating an Apple Metaphor

Acceptance is like eating an apple. 

You could be trying to lose a little weight or eat a little healthier, so instead of snacking on your usual slice of cake, you have an apple. You may “choose” an apple, but what will it be like to eat that apple? As you eat it, you start comparing it to the cake. With each bite, you’re thinking about how the apple isn’t as sweet, fudgy, and good as the slice of cake. Then, when you’re done, you eat the cake anyway.

Another way to experience eating the apple is to just let the apple be an apple, rather than needing or wanting it to be something it is not. Just notice the crispness of each bite, the juiciness, and the sweetness for what it is and not for what it isn’t, a slice of cake!

I believe that acceptance is the foundation for living well with a chronic illness, health condition or disability. And, by learning to just let the apple be the apple you will reach the stage in your chronic illness journey where you no longer want to fight or change the situation. 

This gives you energy and choices to manage your symptoms more effectively, evaluate what you want in the world and learn how to communicate better with everyone around you. Acceptance is often the first step in this process, where you commit to yourself and truly acknowledge who you are.  

Want to know more about acceptance and how I can support your journey to live chronically well >> lets talk 

 

 

 

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Join The Community

The Thrive Tribe is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness, that pain and fatigue are getting you down. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. 

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

What are you waiting for!

 

Managing Chronic Pain Without Medication In 7 Golden Steps

Managing Chronic Pain Without Medication In 7 Golden Steps

7 golden steps to manage your chronic pain

I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away.

I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can think of it as having wonky wiring.  I also have Ehlers Danlos Syndrome, a connective tissue disorder meaning in simple terms that the glue that holds my body together is too stretchy, like chewing gum. One condition is progressive the other multi-systemic meaning chronic pain and fatigue are common features in both of these conditions.

For generations pain is something that I have tried not to think about, to put to the back of my mind, to push through.  I had always been a high achiever, setting myself goals and working hard through school, university then in the world of work, there wasn’t time to bother with the pain and the limitations it placed on me.

As the years rolled by my ability to keep up this fight began to slip away, I was having more periods of chronic fatigue wiping me out for months and pain that would consume me.  It has not been uncommon for me to collapse, physically unable to put one foot in front of the other.  My health had already robbed me of me career as a teacher. Then in a gradual process, that to the untrained eye may even remain unseen, my life became more and more difficult. I never made it out in the evening with friends and even taking the children to the park for half an hour was a huge effort, everything revolved around the pay off and the pain that the task would bring and life began to get smaller and smaller.

I decided to fight back but in a different way, this was an active choice for me. It was only at this point that things started to change. Over the last ten years, in a slow steady process I have made positive steps to cope and to live.

Looking back I can barely recognise the desperation that I felt at that point in my life and the overwhelm that consumed me. I now see what that it is a combination of lots of elements that have allowed me to change and maintain that change over time.

 

 

Managing chronic pain without medication in 7 golden steps

 

 

 

1. Acceptance Lady with her head in hands due to chronic pain

One of the hardest things for me has been acceptance, my chronic pain is something that I would like to get rid of but I can’t, at times it has angered me and made me sad, reflecting I think that’s helped me on this journey. It is part and parcel of EDS and CMT and may get worse over time, I now accept this fact and deal with it. I view pain relief now as a form of control rather than it being a weakness. It is proven that mood and stress all have an impact on pain. So the process of acceptance involved becoming a master of my emotions and my thought processes and letting go things that are not serving me. With this my chronic pain has become easier to manage.

 

2. Let go of all negativity

I have learnt to let go of negativity.  Some people won’t understand the pain that I live with or how it impacts everyday on my life. This used to bother me a lot, especially when a family member didn’t have a clue and did not want to take the time to learn but would be quick to judge, dis-believe or offer advice.  Or when someone would give me ‘poor you’ sympathy when I know full well they really didn’t care. I can’t say that I am totally immune to their comments, I’m human after all but I am learning to let go and to focus on what is important, life is too short. You do not have a control over other people but you absolutely have a choice over how you respond to them. It strengthened my relationships with people around me that are important and allowed me to see which relationships were not serving me and let go.

 

3. Empowerment through learning

Empowerment came when I made friends with my illness. When I was first diagnosed I didn’t want anyone to know about it, I wanted to be normal, the same as everyone else. I went through a long grieving process. I grieved for the things I knew I would loose and where my illnesses would impact. This took time. Now I can talk to anyone about these conditions and enjoy sharing my experiences with others, EDS and CMT are part of me and that’s fine.

I have learnt about my conditions in order to manage them, reading, networking and attending conferences have all enabled me to understand why I have my symptoms and the correct ways to manage them, it’s made a huge difference. Facebook has been an amazing source of information but I steer clear of the ‘poor me’ Facebook groups about my conditions where people seem hell bent on competing to have the worst symptoms, as I believe that is not a healthy narrative. Where there is support, great… learn, take what you need and move on. You are more that your illness and spending too much time online in un-supporting environments can be counter intuitive.

 

4. Strength through exercise

I’ve got moving, I regularly attend Pilates classes, I brought a dog so that I have to walk every day (although as he ages and my knee is failing, neither me nor the dog can manage to walk most days) and I do resistance training most days even if it’s just 5 minutes. In the past I have driven to a Pilates class (on more than one occasion I might add), parked up outside and sobbed.  Part of me knew that I must push myself to go in, to get stronger, to get better but I didn’t have the energy to get out of the car and walk through the door, I would drive home defeated.

There is a balance to be found between being doing too much and doing too little, both are counter productive, it is important to build strength at a steady pace so that you can maintain it.  Slowly, the stronger that I have become, the less falls I have and the more confidence I have gained and I don’t visit that rock bottom place so much now. I feel proud of what I have achieved. When a trusted consultant reviewed my history and surgeries they were genuinely surprised at how mobile I was, that I should be pleased I was not using a wheelchair.

When you exercise, your body releases chemicals called endorphins. These endorphins interact with the receptors in your brain that reduce your perception of pain. Endorphins also trigger a positive feeling in the body, similar to that of morphine… so a win, win for pain.

 

5. Coping strategies

One of my friends commented how vague I am when making arrangements. She was envious at my laid back nature as she always liked to be super organised.  Now she realises that I am deliberately vague as I can never predict how I can be feeling from one day to another and that way I don’t have to cancel plans if I can’t make it. I type instead of writing, we have installed a zip tap so I don’t need to lift a kettle, I have two handled pans in the kitchen and I have a cleaner. I have developed these coping strategies without even realising it over time.

I have learnt to set boundries in my life without feeling guilty about it and to focus on what I need and want leaves me more time and energy for the people that I love. This new way of looking at my life took work, but ultimately I am showing my children that they need to value themselves too.

Don’t underestimate the power of lots of small interventions, they can make big difference.

 

6. Pacing, pacing, pacing

lady tired due to pain and fatigueChanging my mindset did not happen overnight.  I rebelled.  With a busy family I thought that the only way to

function was to push, push, push but I realised that it made the crashes more severe.  Feeding into the boom and bust cycle only serves to increase pain over time, once I understood this and could see the benefits that change could offer and it became easier to implement. Pacing my day activities to stop feeding into the pain is my most effective way to manage long term.

 

7. Focus on the good

Have you ever been buying a new car? You see that car everywhere don’t you? The same happens with your illness. The more focus you give to the negative elements of your condition, the pain, fatigue, the loss, what is hard for you now, the more you will see evidence for those things. The subconscious mind likes to send you evidence for the things that you are thinking about.

I try to focus not on what pain takes from me but what it has given to me, the relationships that have been strengthened, confidence, positivity, empathy and  my ability to not sweat the small stuff.

 

 To Sum Up

I love to give back, at first this involved writing and sharing our families story with the world @Mystripylife about living with these often mis-understood and under diagnosed conditions. I love to speak at events to raise awareness. The catalyst was always to raise awareness and make things a little different for my children as they grow and embark on their own journeys with varying degrees of symptoms from CMT, EDS, PoTS and ME.

This has grown into undertaking training as an NLP coach to support others on their journey and empower them to live chronically well. I give them the ability to laugh, to see the beauty in every day, recognise their needs and values and how they may have changed, re-discover who they are and what they love, find balance with their health, work, family and life and always know that whatever life brings happiness is a choice.

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FREE 30-MINUTE TASTER SESSION

Welcome to the very first step in your personal transformation

Deciding that you are ready to strive toward your goals and change your life is one hell of a big deal. Lets take a little time to chat, to get to know each other, find out what you are hoping to get out of the coaching experience and make sure that working together feels like a great fit for both of us.

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and more balls juggling in the air; always trying to maintain impossibly high standards, and with each success you achieve the greater the feeling that you aren’t enough?

If so, you’ve probably experienced imposter syndrome, right along with an estimated 70% of the population.

Imposter syndrome was first described back in the late 70’s by psychologists Pauline Rose Clance and Suzanne Imes who recognised that this imposter phenomenon was particularly prevalent amongst a select group of high achieving women. But, it is known to affect all kinds of people from all walks of life, men, women, medical students and managers.

Even international superstars are not immune to its effects. Emma Watson, star of the Harry Potter movies told Rookie magazine, in an interview (2013), “It’s almost like the better I do, the more my feeling of inadequacy actually increases, because I’m just going, ‘Any moment, someone’s going to find out I’m a total fraud, and that I don’t deserve any of what I’ve achieved.”

More and more imposter syndrome is being seen in marginalised groups and shows up regularly in the disabled and chronic illness communities. It makes perfect sense that your feelings of self doubt and being a fraud are more likely to show up if you have grown up belonging to a group that was historically believed to be less capable.

According to the department of health, fifteen million people in England have one or more long-term health conditions, and the number of people with multiple chronic illness’ is rising. These are conditions which cannot be cured in most cases, but which can have a major impact on people’s everyday lives. Aside from the physical symptoms, people with long-term conditions are 2-3 times more likely to suffer mental health problems than the general population (King’s Fund) and with 15% of all long term conditions seen in young adults aged 11-15, this group is too important to ignore.

With the pressures in society increasing, imposter syndrome is likely to be seen more and more.

 

How does imposter syndrome show up when you have a chronic illness or disability?

The more I delve into this topic the more I can recognise my imposter showing up for me during the different stages of my chronic illness journey. As a young adult before my diagnosis, after diagnosis (while simultaneously trying to juggle work and hide from everyone the struggles with my health), when I was a new mum (and my health crashed to an all-time low), and even now, when I feel like I am not well enough to be ‘normal’ but don’t look disabled enough to fit into that space either.

Expert on the subject, Dr. Valerie Young, has categorised imposter syndrome into five subgroups in her book, ‘The Secret Thoughts of Successful Women: Why Capable People Suffer From The Imposter Syndrome and How to Thrive in Spite of It’: the Perfectionist, the Superhero, the Expert, the Soloist, and the Natural Genius. I can recognise elements of myself in most of these Imposter archetypes, particularly the perfectionist, the expert and the superhero. Read more here – What Is Imposter Syndrome and Do I have It?

 

image of a girl feeling like a fraud with a list outlining 8 ways that imposter syndrome shows up when you have a chronic illness or disability

 

Feeling like a fraud in your own body

I was diagnosed in my 20 with Charcot Marie Tooth disease (CMT) and in my 30’s with Ehlers-Danlos syndrome (hEDS), despite living with the symptoms since being a small child, at points hospitalised unable to walk. I encountered decades of normal blood test results and doctors telling me that there was nothing wrong, when in fact the doctors were never looking in the right place.

Now we know that imposter syndrome makes you feel like a phoney. Imagine being told all your life that your symptoms are in your head, that the pain that you are experiencing has no cause, so much so that you begin to doubt that it is real yourself. Then when, often as an adult, you finally get a diagnosis you still doubt yourself. The decades of feeling like a fraud in your own body are hard to shift. When you feel pain, even after the validation of a diagnosis, you question if it is as bad as you are imagining. This feeling of being an imposter can be as crippling as the pain itself.

 

Imposter syndrome and refusing your own success

These feelings spilled over into my studies at university. I came from a very working-class background and was the first person in my family to go to Uni. My symptoms continued throughout my teens and my time studying and I began to just push them aside more and more. If no one could find a reason then I must be imagining it, right? Dislocations would happen more often than brushing my teeth and I could relocate my patella as easily as zipping up my trousers. I worked hard and my grades steadily got better and better and I left university with a 1st degree. But, I didn’t believe that I deserved it, nor had I earned it and I put it all down to a fluke. Applying for jobs I would often downplay my expertise even though I was genuinely more skilled than the other candidates. Thankfully they saw me for who I was, sat in front of them with the skills I possessed and viewed my modesty as an admirable quality rather than the imposter around my neck holding me hostage.

 

Your imposter making you doubt your symptoms or disability

Occasionally I have to use a wheelchair to get about, when I can’t weight bear as my labral tear or hip impingement is flaring or if I have had a dislocation. There have been points over the last few years where our son would not have been able to leave the house without one. And, our daughter uses a wheelchair regularly when out and about to manage pain and fatigue. We can walk, mostly we look well (although that is not always the case with my son, but you generally won’t see him on those days), and we are happy. Which begs the question where do we fit? We certainly do not ‘fit’ into the disabled criteria, neither are we able bodied. Using a wheelchair part time can make you feel like a fraud and question your reasons for using it at all. Should I just manage without, even if it leaves me unable to walk for the next few days? That nagging doubt begins to creep back in.

Image of a lady with blue hair feeling self doubt with the text overlay '8 ways imposter syndrome shows up when you have a chronic illness or disability'

 

 

 

Imposter syndrome fuelled by medical gaslighting

With my diagnoses’ I entered two worlds; One where I had a genetic test to confirm it (CMT) and one where I didn’t (hEDS). And what I have noted time and time again is that the imposter phenomenon is far more present in the latter due to the continuing doubt form the medical community that hEDS exists at all. Similar practices are echoed in the M.E. (myalgic encephalomyelitis) community. Another condition is diagnosed clinically and at present has no conclusive test to diagnose. Medical practitioner’s gaslight patients by blaming their illness or symptoms on psychological factors, or by denying a patient’s illness entirely, for example by wrongly telling patients that they are not sick. After enduring decades of ‘normal’ test results I was adamant that I did not need nor want any support with my psychological wellbeing. I was not going to let anyone tell me that these conditions were in my head. This narrative caused by medical gaslighting is damaging, many people with long term conditions would benefit from support to process their emotions and thoughts surrounding the impact their health condition has on their life and move forward positively, but like me will refuse it.

 

Being a perfectionist and self sabotage

Being a perfectionist is the imposter avatar I relate to the most, this probably has something to do with my personality type but also relates to my experiences with disability and chronic illness. As a young teacher, quickly progressing through the ranks in school I placed impossibly high standards on myself to match up to my peers. I worked longer and longer hours, weekends, volunteered for things that I did not really want to do all in a bit to prove to others (and myself) that I matched up. That my disability did not need to get in the way and that I did not need special treatment. The truth was that my colleagues probably never thought about my health because I hid it so well and what I projected was so ‘normal’ and capable. What I did was place an impossibly high bar for myself to achieve and made myself more sick in the process. If I had been honest with myself then I may have stayed in the profession, either way I would have had a choice. My fear of failure and insecurities had a hand in sabotaging my own success.

 

Asking for help is sign of weakness

As a new mother my body actually started to fall apart. Surgery after surgery came and when I wasn’t recovering from a procedure, I just felt generally awful. On top of that I felt guilty that I wasn’t the mum to my young son I had visualised in my head. In a bid to prove to the world that I could cope I tried to do everything on my own, firmly believing that asking for help would be a sign of weakness. I felt ashamed that I couldn’t do everything (although people rarely saw because I didn’t let them). I was always striving to be better, not less than. Looking back with fresh eyes I can see that this time of my life was actually quite precious, I was present with all of my children every day. Had my body not been falling apart I would have undoubtedly been trying to conquer the world and having it all. The bond I now have with each of my three children is unbreakable and it is due to the fact that we have always spent so much time together.

 

Ableism fuelling imposter syndrome

Ableism, the discrimination towards able-bodied people is strong throughout them educational system in the UK, particularly when you have a disability or medical need but are academically bright. You are entitled to educational accommodations to help with your studies or tests, to level the playing field so to speak, maybe because you get brain fog and need regular rest breaks, or get hand pain when writing and need to use technology or a scribe. Many people with a disability or illness are made to fight for any real support leaving them with feelings of doubt questioning if they really deserve the accommodations in the first place. To get the right support in place for my teen, who was too sick to attend school at all took twenty months rather than the twenty weeks suggested by the UK government and we ended up in court. Twenty months and a court case to secure at home online education, that is now so commonplace. Seems ridiculous. Many give up as the system is stacked against them. I see the feelings of uncertainty in this population time and time again.  It stems from this deep rooted ableism, a lack of money and a system that is stacked against them.

 

Comparison feeding the feeling of not matching up

As someone with a (mostly invisible) disability, I am guilty of comparing myself to others. From my best friend would literally looked a stone lighter on a night out when she popped on her 6″ stilettos, while I donned sensible flats. To the mums in the playground with their perfect car and child and hair, that seemed to have it all. Fuelling the feelings of not being good enough that stemmed from my body letting me down. What I have come to realise is that no one actually has it all, least of all the mum who hid behind her perfect life to hide her own crippling insecurities and debt.

 

Facing my Imposter feelings

As I have aged and am now well into my 40’s I can look back on my life with reflective eyes, both on the progression of my chronic illness’, my work, my growing family and my feelings of being an imposter.

My feelings of being a fraud have pushed me out of my comfort zone at many times during my life, like when my tutor said I wasn’t bright enough to be in his A level biology class (note the first degree), or when I spoke to a room full of paediatric consultants about my children’s conditions and each year when I guest lecture at Brunel University. Credit where it is due, at points in my life my imposter has truly been the driving force behind my successes.

I am still a perfectionist, but I can recognise when that is not serving me and know that done is better than perfect. I know that I can play to my strengths, because I have many of them and am happy to ditch or delegate the other things to other people. I know that asking for help is a sign of strength not of weakness and by working together with others I can achieve so much more.

Will we still have to face gaslighting from the medical profession? probably. It saddens me to think that this still goes on. I stand strong in appointments with professionals and where our opinion differs, for example where a consultant told us he didn’t actually believe our son’s condition existed at all, (clinically diagnosed by an esteemed colleague). I thank them for their comments and move on… quickly.

Do I care that my daughter uses her wheelchair to ride to the park so that she has enough energy to play while she is there and still be awake at teatime? Of course not! Do we get funny looks when she gets out of her wheelchair and her older brother shouts ‘IT’S A MIRACLE’ for all to hear? Most definitely, but we laugh and carry on with our day.

What I am noticing is that I am raising children with their own health issues who are confident and proud, of who they are and of all their abilities and achievements. Disabilities or not they have a strong and positive self-concept and I am proud of each of them as they grow.

What has changed over the years is not my disability or illness or the world in which I live but my own thought processes surrounding everything to do with my life and my health. My mindset, my own attitude towards myself and my illness has grown, and what has followed is a freedom I could have only dreamed of in my early 30’s.

Do I wish I could wear high heels? Sometimes. But if that meant giving up who I have become I will keep this version thanks.

 

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Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. Or, to support your children to live theirs.

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

 

How I Fake My Chronic Illness Symptoms

How I Fake My Chronic Illness Symptoms

I fake my EDS symptoms all the time.

Every day.

For as long as I can remember.

It is second nature, it’s why I am so good at it.

 

Now I don’t mean I’m faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are ever present in my life.  Quite the opposite in fact, because of the invisibility of EDS I have become a master at faking being ‘normal’.

Here are the top twenty ways  that I have learnt conceal my illness on daily basis and to blend with the masses – to appear to be normal. How do you fake your chronic illness symptoms?

One. Smiling… I make a huge effort to have a happy life and try not to let things get me down.  Just because I am happy whilst being ill doesn’t mean that my conditions have disappeared, it simply means I have chosen to be happy in spite of my illness’, which is no mean feat.   I have mastered the ‘fine thanks’ response when someone asks me how I am, no one honestly wants to hear the truth!  It’s important to be happy, it’s good for your health.

 

Two. Make up…. I put my face on every single day, it is my mask for the real world and I like wearing it.  Only those people that know me very well can tell how I am feeling behind the smile and the make up.  By looking into my eyes.  Even if it’s just a bit of mascara and a sweep of blusher it makes me feel better about the day ahead, more human.
 

Three.  Ditching the kettle… I have boiling water plumbed in because I can’t lift a kettle without a dislocation.

Four.  A pushchair… When my children were young my mobility was at its worst.  I would get out the buggy to hold on to when I walked along even if the children didn’t need to sit in it particularly.  I would let them hold on and walk slowly with me while it held me up.  I miss the fact that they are all too big for a pushchair.

Five. Leaning… Standing is hard work 1) because of pain and 2) because standing still makes me dizzy and when things are bad I can be clammy, shivery, breathless and can even faint when upright.  You will notice me just propping myself up on a table or a doorway.

Six. Fidgeting… Sitting and standing for any length of time is uncomfortable and moving just helps.  Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out.

Seven.  Standing up slowly… Always, to minimise the head rush and dizziness.

Eight.  Pacing… I am driven, I like getting loads done but I would find that I would push and push only to crash later.  Pacing used to be my enemy but I have had to work hard to make it my friend.  All of my daily activities are paced and no one would ever know! It increases the amount that I can achieve over a given period instead of feeding into the boom bust cycle.

Nine.  Hiding fatigue… You can’t see fatigue, unless you know me well and on the days when my fatigue is at it’s worst you won’t see me at all because I physically can not get out of bed or leave the house.  My life is planned 24/7 to manage this element but sometimes it creeps up on me and catches me out.  I have collapsed before unable to put one foot in front of the other and been rushed to hospital.  People won’t know or understand how bad this can get because they just wont see it.

eds pain scale graphic

Ten.  Managing pain… I have become an expert at hiding my pain (and I have a pretty high pain threshold), you won’t see the amount of medication that I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy.   I am a master of disguise too, I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it and unless I knew you well I wouldn’t even tell you!

Eleven.  Planning… If I do have something particular on a certain day then an immense amount of planning goes into it.  I’m still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction because I had a meal out two days before and didn’t plan enough time for my body to recover in between.

Twelve.  Avoiding obstacles… This has become like second nature.  This time of year just walking to the car there are obstacles, the blanket of Autumn leaves may look pretty but in the dry they mask the unevenness of the pavement beneath and in the wet they are slippery.  I always walk around things where I can, or take another route.

graphis saying 'how do you fake normal when you are chronically ill?'

Thirteen.  Wearing a vest… I have the ability to stand in 30 degree heat in the summer and still have goosebumps, I wear vest all year round.  I’m also fond of a scarf  gloves and a hat.

Fourteen.  Orthotics / braces… These are hidden in my shoes, under my jeans.  Unless something visible like my wrist or thumb was braced you would never know.  There was one time this year my ankle was in fact braced as it was subluxated and wouldn’t relocate.  A mum at school spotted it and questioned if I was wearing a tag!  What she didn’t notice was the excruciating pain on my face as I had to bare weight, I have learnt to hide it so well.

Fifteen.  Tight clothes… Skinny jeans aren’t a fashion statement for me they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints.

Sixteen. Eating well… Eating small regular meals helps me to manage a whole host of gastro and autonomic symptoms as does eating gluten free.  If you went out for dinner with me would you know by my choices?

Seventeen.  Being vague with arrangements… This is another one of my coping methods, I can never tell how I will be feeling from one day to the next let alone a week or two in advance so I tend not to make definite plans unless I have to.

Eighteen.  Linking arms with a friend… To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky; slippy leaves, a wet floor or if its icy.

Nineteen.  Friends… Making time for a regular cuppa with friends to chat about anything else but Ehlers Danlos, health and hospitals.

Twenty.  A sense of humour… This is so important when faking being normal.  Being able to laugh at yourself and having the ability to look back on situations that have happened with a smile (because there are many) is a must.

 

So when someone calls me a faker in a way the are right, I have become a master at concealing my EDS symptoms in order to just live.  I choose when to talk about what is going on for me and when not to and who needs to know that information about me.

What I’ve learned is that my conditions are a part of me, they are not who I am.

They deserve their space in my life in order that I can manage them effectively but they are not all that I am. I put many things in my life over and above chronic illness symptoms and disability and that ensures that it is kept in perspective.  I’m a mum, wife, coach, educator and advocate – I love to draw, to write, to read, to eat in fancy restaurants and enjoy time at the local pub in front of a roaring fire.  I love the sky and all its colours and to watch the sunrise with a nice cup of tea.  Absolutely all of these things consume my thoughts before chronic illness gets a look in and that is key to living your best life even with an illness or disability.

 

The original version of this post was published on My Stripy Life and was picked up and published on The mighty Site you can check it out here and my other published posts.

Here are some of the comments on the post…

Oh, the pushchair….how I empathize with that. I just sank an eye watering amount of money into what will be our last stroller…my daughter is almost 5, and she rarely rides in it, but when she runs out of energy, she is DONE and at 40lbs, is too much for me to carry for very long/far. I get the odd funny look at her in the stroller, but frankly I don’t care. If it helps us get out when my joints are angry at me, and when she is having a rough day, people can just mind their own business.

I do so many of these! Thank you so much for sharing, now I don’t feel like I’m the only one. I sometimes wonder whether I should actually be honest about how I’m feeling with people, but from experience, unless they’re already close to me, they don’t usually pay any attention even if I do tell them the truth. I sometimes we could do with a hug, so I’m sending one to you to say well done, not in a patronising way, but in a wow you’re amazing way. To have gone through that much and still function each day, even if deep down you don’t feel like you are, you’re truly amazing.
Hi you are a very courageous woman my lovely and as the comment made by Linda my partner has this nasty condition, she also has O, I, brittle bones she never complains and yet like yourself is in constant pain . The drs told us it is very rare disease but im not so sure its that rare as we have read and heard about so many more people who have this disease .thanks for sharing your story with everyone my partner felt quite alone before but is now seeing she isnt on her own I love her so much and it tares me apart not being able to take her pain away.xxxx
Sounds exactly like our daughter who is 16 years old. I sent it to my husband and if he would have not known it was written by someone else, he would have thought our daughter wrote it. Thank you for sharing. Having a child who as EDS has not been an easy feat lately, especially, when she is also a teenager. It is nice to know there are others who have experienced the same exact symptoms as she is currently.

The first week it went up it was the most read post on The Mighty Site.

Please share your thoughts below – others would love to hear. Be Mighty!

 

graphic with the words 'How i fake my chronic illness symptoms @sarahwellscoach

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Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. Or, to support your children to live theirs.

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

Overcoming Imposter Syndrome – Journaling your feelings

Overcoming Imposter Syndrome – Journaling your feelings

Last week I spoke about Imposter Syndrome, you can read about it here – What is Imposter syndrome and Do I have it?

The first step in overcoming Imposter Syndrome is to acknowledge what you’re feeling, and why. Start by keeping a journal or writing down your thoughts and feelings. Whenever you experience feelings of self-doubt or inadequacy, write them down, and explain why you’re feeling this way. Be as specific as possible about each situation.

One great way to overcome your Imposter is to write a letter to your inner child or younger self. To tell yourself that it is OK to try, to make mistakes and to learn. To try new things and to be successful. Ask her why she feels the way she does about what she has achieved… dig deep. Go back to where it all began. What made you believe that you are unworthy of greatness. Feel the emotions and write them all down to get them out, what thoughts come up?

When you are done you may want to destroy the piece of paper. Or, refer back to it to show you how far the you have come. What ever you choose to do, breathe easy. That is past. 

I have done this a few times, for me looking back at a time that was tough can be a cathartic and healing process, like journaling, it helps to get the emotions surrounding different experiences out and to process them. It helps me to put things in perspective. Having multiple diagnoses there have been times when I have really doubted myself. As a young teacher, unable to work anymore.  As a new mother struggling to care for my young child.  When diagnosis after diagnosis hit our family and I doubted that I had ‘what it takes’, sometimes crippled by fear of what lay ahead for me. 

I wrote this 4 years ago, triggered as my first child became a teenager, on his next birthday he will become a man. It is as it is. Raw and un-edited.

 

I did not know when I wrote this that I was yet to face my hardest test when my son became bed bound for a time with Myalgic encephalomyelitis. The strategies that I have learnt during my time as a mum: mastering my mindset, developing emotional intelligence and generally becoming emotionally tough, have hands down helped me to cope with these unexpected events. Reflecting back helps me to know how far that I have come and what I have achieved.  

 

Dear Younger Self

Thirteen years ago I gave birth to my first child, as he enters adolescence (and I wonder how that could be possible) I realise a lot has changed and there is much that I have had to work out for myself.  So I decided to write my 2004 pregnant self a letter sharing what I have learnt so far.

 
Dear Sarah
 

Forget birthing plans, a water birth, scented candles and nice relaxing music playing in the background, the only thing that you need to focus on when you go into labour is your breath.  It will be an ally silently holding your hand when things get tough. This may be your first baby but let your body speak to you and listen carefully as it whispers. Trust and stand up for yourself, don’t be so nice.  The nurses won’t actually believe that your labour is established because you cope so well and you labour so quickly.  There will be panic, baby will be distressed but stay clam, focus on what you need to do you will soon hold him in your arms.  And it hurts, especially with zero pain relief but one day you will understand the joy in childbirth, I promise.

Nothing will prepare you for the overwhelming love that you feel for your baby or the paralysing tiredness that you will never seem to shake.  Make the most of the first few months because after that point your body will start to fall apart. Chronic pain and fatigue will hit you like a truck and you will be weak.  Accept help and don’t be so proud.  Letting someone else cook dinner once a week does not make you a bad wife or mum, just tell someone that it is hard.

The niggly pain that you have in your foot will leave you almost incapable of walking soon and will take 9 months and a surgery to resolve.  After the operation you will wake up with a smile so broad from the relief of that pain that you actually cry.  The tests into the problem will leave you with a diagnosis of the neuromuscular disease, Charcot Marie Tooth, take time to come to terms with this, process it, grieve, don’t rush it, you need this process in order to move on.  At this point it will seem like your life starts to unravel, to be honest it does.  It steals your career and you will dislocate merely as the bed covers lightly brush across your knee, you will get to the point where walking on grass is impossible without falling and having more dislocations, life gets harder.  You will feel as if you are being stripped of your mobility, your dreams, your friends, your goals and your identity.

It gets better.  You will realise that teaching is a job, that you are replaceable and that’s OK.  Where you matter most is at home with your family.  You will learn that strength is not merely a physical pursuit it comes from within. You will develop perseverance and patience, when things are tough they will improve. You will learn to think out of the box and find solutions when problems present themselves, the rewards can be so much more when you work harder for something. You will learn to value what is dear to you and treasure it with all of your heart. And you will learn intrinsically not to judge others because you never know their story. You will become a better person.

You will also discover that what you have been doing for years is pacing your life without even realising it. Those naps every day after work before Dave gets home, 10 minutes on the sofa flicking through a magazine, takeaways a couple of times a week. You just can’t do that now that you have another individual relying on you with every inch of their being.  Fatigue will hit you, time and time again. There will be points in your life when you will not get out of bed and wash for days or weeks at a time.  Where you will physically collapse unable to actually put one foot in front of the other. Where you wonder if it will ever improve and how? It will get better, slowly. You are a warrior now. Pacing will become your friend again but it will take nearly a decade to understand its impact on your body and make it work in your new life.

After two and a half years when your family increases, be warned, this labour will be even quicker. You do make it to the hospital, but only just, you lose a lot of blood, consciousness and go into shock.  It will take another six or seven years to learn that you have Ehlers-Danlos syndrome and POTS and that they are the cause of this. The same pattern will continue after baby number two, pain and fatigue will be relentless you will visit more doctors and hospitals in the search for answers than you ever thought possible. Where you once navigated London by the night clubs and shopping hubs you will now have a mental map of the leading doctors and teaching hospitals. Some of these doctors won’t believe you, some will but will be at a loss to know where to start or how to help. When you stumble upon professor Rodney Grahame the pieces will finally start to fall into pace. Although a relief, an EDS diagnosis is only the start of the journey, you will spend the rest of your life learning how to live in harmony with these conditions, managing them, trying to be the boss. Researching and managing their impact will become a full time job. Apart from your husband no one will really see the effort involved in keeping up your normal appearance to the outside world. This new life, while different can be fantastic, just take a breath and learn to appreciate the joy in every day.

You discover the beauty of childbirth when your daughter comes into the world. A peaceful home birth surrounded by those that you love and a midwife that you trust. Breathe it in, enjoy it. She is your little miracle and will teach you even more about strength and perseverance than you ever believed possible. As your children grow you will start to realise that they have their own mix of things going on for them and pain and fatigue will sadly become a daily part of their lives too. This is the hardest part of your life and I can’t ever promise that watching them in pain and to struggle will get any easier. You are a zebra mum and you will fight for their care with every last once of your being because you love them so fiercely. You won’t believe this now but because of them and because of your passion you will have an inherent need to give back, you will be lecturing at Brunel University and helping families with your experiences from all over the world.

journal entry about overcoming imposter syndrome; overcoming obstacles and facing fears

Once your children are at school you will face some of the most challenging times of your life; trusting others with the most important people in your world and to manage their health when they are often not willing or prepared to step up. This will be the most stressful thing that you ever do.  There will be ignorance and ego’s of which you have no control. But there will also be angels disguised as teachers along this path that shine light in the darkness. Your children will amaze you every day with their achievements and will prove that they are much, much more than their illnesses and how they feel.

Learn to eat well, for you this means gluten free. Stay hydrated and exercise often even if every ounce of your body is screaming no. Teaching this to your children will be the  greatest gift that you can give to them. There will be non-believers, naysayers; people with far too much opinion about what they think is or isn’t wrong with you. There will be people that will talk about you behind your back and even to your face. Don’t let these people steal your joy.  Don’t waste your time trying to convince them what is fact, you are not responsible for their thought processes. Use your energy on the important things, wellbeing, happiness and enjoying time with your friends and family.  Live.

While at points along this journey you will feel like your life is unravelling it will actually be falling into place. As friendships fade they will be replaced by new ones, stronger ones, with people you adore and who adore you for exactly who you are. Your illness will not be an issue at all to them, you are just you and you happen to have an illness. And your David, he is just as amazing now as he was then. In fact even more so.

With love,

Sarah xox

 
Ps. On the 16/8/16 Do yourself a favour and take a picnic.  It will save you a swim in the Thames.
Pps. Remember that you can still be assertive and nice, too much nice and people take advantage.
Ppps. Whatever happens keep smiling.
 
 
Could you write to your younger self at a time in your life that was stressful, like a chronic illness diagnosis, or to your inner child? Looking back and being kind to yourself can be helpful.
 

What could you reflect back on? What made you feel unworthy of your greatness? What could you tell your younger self? What have you learnt? What new things do you want to try? 

Let me know what comes up for you? 

 

Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. Or, to support your children to live theirs.

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head...

Managing Chronic Pain Without Medication In 7 Golden Steps

7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and...

How I Fake My Chronic Illness Symptoms

I fake my EDS symptoms all the time. Every day. For as long as I can remember. It is second nature, it's why I am so good at it.   Now I don't mean I'm faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are...

Overcoming Imposter Syndrome – Journaling your feelings

Last week I spoke about Imposter Syndrome, you can read about it here - What is Imposter syndrome and Do I have it? The first step in overcoming Imposter Syndrome is to acknowledge what you're feeling, and why. Start by keeping a journal or writing down your thoughts...

What Is Imposter Syndrome And Do I have it?

What Is Imposter Syndrome Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than our own skills or qualifications? Or, do...

Home Schooling During The COVID Lockdown – Top Tips To Survive!

Let's face it, for all parents in the UK this January plans will have changed. The further restrictions placed on us all by the latest COVID lockdown means the nation once again will be faced with our children accessing learning from home. Some of you will have...

How Self Compassion Helps To Combat Loneliness

I have written this article after being asked to share my thoughts on how self compassion can help with loneliness for the Podcast 'How To Be...' by the amazing Suswati Basu.   What self compassion means to me Self compassion, put simply, is the ability to have self...

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