Living with a chronic condition can be devastating. As well as the physical pain, it can cause mental and emotional distress, affect relationships, career and every single aspect of life. That was definitely the case for me for many years. I felt I had been robbed of my childhood, career ambitions and overall hopes and dreams for a happy, fulfilled life. Over time, I began to lack the energy and motivation to get up in the morning, let alone do anything else.


The transformation I went through didn’t happen overnight; it was a challenging and emotional process, but it was definitely worth it.


At 33 years old I was finally diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS) & Fibromyalgia. Since the age of 13, these conditions had gone undiagnosed and I’d been fobbed off and made to feel like a hypochondriac by several specialists. Then one day, I got to the ‘enough is enough’ stage and decided to take back control of my life.


By reflecting on the process I had gone through (with all it’s up and downs), I wanted to do something that could help others in a structured way, so I became a Chronic Illness Mindset Coach, focussing on supporting others to transform their mindset and reclaim their power.


The following was my process, which I've broken down into 6 steps.


 


Acknowledge – Step 1














In order to make long-lasting change in my life, I had to be honest about how living with pain affected my daily choices, anger, fear, lack of motivation, self-pity, reactions to things and people, relationships I chose – whether it be friendships, family or intimate – lack of confidence and hope for my future.


By acknowledging these things, I was able to identify the areas I wanted to work on. It also helped me to recognise strengths and weaknesses, as well as areas in which I was being too hard on myself in my quest to be perfect; a perfect mum, friend, daughter, sister, partner and to have – what society recognises as – a successful career, even if I didn’t enjoy it.


I began the process of reinventing myself. The ‘new and improved Cassandra’, leaving behind as much of the negative stuff I could that was hindering many aspects of my life, and creating a new way of thinking feeling and doing. Embracing the new me!


That didn’t mean I stopped having pain, discomfort, subluxations, chronic fatigue and all the rest of the horrible things I experience with hEDS and Fibromyalgia, it just meant that my perspective on how I would allow it to affect me mentally and emotionally would change.


Does any of this resonate with you?


Has a chronic condition taken over your life?


Have you reached your ‘enough is enough’ stage?


 


Acceptance – Step 2










Living with a chronic condition that can’t be cured can be extremely difficult to accept. Read about the second step I took in my process to reclaim my power, while living with chronic conditions hypermobile Ehlers Danlos Syndrome (hEDS) and Fibromyalgia for 30 years!


WHY SHOULD I ACCEPT BEING IN PAIN EVERY SINGLE DAY OF MY LIFE?!! I DON’T WANT TO ACCEPT IT; I JUST WANT IT TO GO AWAY!


That was me for quite a while.


Even though I’d learned some coping mechanisms for living with hEDS and Fibromyalgia over time, when I was finally diagnosed after 20 years I felt a sense of relief, but I was still not ready to ‘accept’ it. Why the hell should I?


Well, the energy it took NOT accepting it was only adding to the lack of energy I already had. It took energy to hide it from people, fight against it, complain about it, constantly think about it, be angry about it, feel sorry for myself etc…I was missing out on so much!


Constantly focusing on what I couldn’t do, rather than what I could wasn’t good for me mentally, emotionally or physically, so, I decided that – to the best of my ability – I would no longer allow these conditions to govern my life. I had to find a way to live rather than exist, in spite of them.


I had to be clear on exactly WHAT I needed to accept, WHY it was important and what could be POSSIBLE if I did.


When I started the acceptance process, I found that things seemed just a little bit easier. No, the pain and everything else didn’t go away, but the way I coped with it was better. I found myself being less hard on myself when I couldn’t do the housework – my home didn’t have to look like it wasn’t lived in anymore, it was ok if the washing up wasn’t done before I went to bed or if a friend came round and my son’s toys were laying around.


I started using special assistance at the airport, instead of struggling on my crutches while waiting in endless queues at customs or the often really long walk to the plane, which usually resulted in me being in agony on the flight and spoiling the first few days of, or my entire holiday.


I found myself exploring alternative career options by focusing on what skills I had or could attain and what I was passionate about, rather than the fact that the career I had in mind for myself was no longer possible.


Eventually, over time, I became less angry with myself and the world. When I had flare ups – although I still felt angry, frustrated and sorry for myself at times – the negative emotions and the actual flare ups were getting shorter.


When I was unable to do something, like take my son to streetdance, I beat myself up less and less and gradually starting learning to ask others for help. I’ve also accepted that it’s ok to admit that I’m not ok! It was a very gradual, challenging process to go through alone and there are still times when I struggle with the effects of living with chronic conditions – particularly when in a long, intense flare up or I get a brand new lovely symptom – but my life looks and feels so much better since I took the step of acceptance.


You can be fortunate in having support through your process. You don’t need to do it alone.


So, the question I’m putting to you is: what would your life look like if you accepted where you are at?


Remember: acceptance is not giving up, it’s moving forward the best way you can!


 


Affirm – Step 3












Are you ready to embrace change? Do you really want to break through the mental, emotional or physical barriers holding you back from achieving your goals, aspirations, happiness?


Change is inevitable. You can sit back, wait, and see what happens or take the reins and have some control over how and what those changes are.


Growth won’t truly happen in a sustainable way until you’re ready for it.


The next step to breaking through your barriers is to declare and affirm your commitment to change. What you’re most afraid of doing is usually what you most need to do!


So how do you do it, you may ask?


I think the process is different for everyone. It took me a while to really embrace the changes I knew I needed to make. I’d been going through the same cycles for so long, the thought of dealing with change was petrifying, but what was even more frightening was the thought of life continuing the way it was.


Part of my process was to create affirmations and a vision board.


You might be thinking, ‘yeah right, as if thinking you are or you have will make things magically happen’. I can tell you from experience, that talking things into my life on a regular basis has helped me achieve things I never thought I would. It’s also helped me feel better about myself.


I wrote several affirmations I aspired to think and feel about myself, as well as what I wanted to achieve. I say aspired, because I was so negative about life and found it challenging to find positive things about myself, even when others did.


Examples of my affirmations were, ‘I am beautiful’, ‘I am worthy of love’, ‘my body doesn’t define who I am’ ‘I can achieve my goals’, ‘I am a good parent’.


I put these affirmations all over my bedroom wall, surrounding my vision board so I would see them first thing in the morning, last thing at night and say them out loud. I even put them in my phone as constant reminders throughout the day.


It took a while, but I finally started to believe them. My affirmations have changed over the years, as have I. I believe growth is a continuous journey, so I continue to affirm growth and change in my life.


Before you know it, the impossible becomes possible and you will be on your way to changing your life in a way you never imagined.


Self-talk and what we let out into the universe is powerful, so make it positive!


I am….


I can…..


I have….


 


Action – Step 4










This is the time when you start to put things into action! Whether your goal is simply to be happy and content with life, change career, or improve your relationships, you need to decide your strategy. We all have different strengths, personalities and lifestyles, so should remember that one size doesn’t fit all. Although it’s important to work on your weak areas, you must create a plan that works for you. I’ve attended numerous conferences, listened to webinars, read a lot of books, blogs and had coaching sessions that provide strategies and methods to achieving goals. I’ve tried many of the given strategies, some successfully, others not. Through my process of self-awareness, self-understanding and reflection, I’ve empowered myself by knowing what does and doesn’t work for me. I’ll be honest, some of the strategies I’ve shied away from due to lack of self-belief, bad timing or fear, but I’ve made a promise to myself that I’ll revisit them. Others, I’ve tackled, regardless of those barriers, such as starting my youth organisation and sharing my health condition with the world. In order to feel confident in achieving my goals and facing my fears, I had to take action by strategising and making a plan. Small, achievable steps were so important for me. When I set myself massive goals to achieve in a short space of time, it was so overwhelming I gave up then beat myself up for giving up! My way of accomplishing my goals, which could be as mundane as doing some housework, is to do what I can when I can on the good days and to pace myself; managing my ‘spoons’ in a balanced way. Sometimes I’ve even had to change my goals to make them more attainable. The old school SMART model often helps: Specific Measurable Achievable Relevant Timing However, there are several methods you can use which you will have access to in my online coaching programme Chronic Illness – It Doesn’t Define Me. There will be times when your goals feel totally unachievable; particularly when you’re in so much pain or so exhausted you’re unable to even think about doing anything, let alone actually doing it! That’s OK and perfectly understandable. It’s OK to have bad days or even weeks where you don’t make any progress. Don’t beat yourself up; just get back on track when you feel able to. Remember your why it’s important and what will be possible when you achieve it.



 

Alternatives – Step 5









Most of the things I envisaged for my life haven’t happened, but the way I deal with life’s disappointments has certainly changed. Often when striving to achieve something, we can become fixated on a particular way of doing it; then we become despondent when that method doesn’t work. I’ve felt that way many times in the past. Due to health conditions that affect my mobility and energy levels, with fluctuating daily pain, I have been knocked sideways, backwards and down numerous times when it comes to my career and aspirations. Repeatedly coming up against barriers really knocked my confidence and motivation which contributed to a lack of self worth. It took a change of mindset to accept that, just because I may not be able to achieve something in the way I had planned or the way someone else says it should be done, doesn’t make it wrong or unachievable. I also came to the realisation that sometimes, what I WANT to do is not always what I SHOULD do. So, for what felt like the millionth time, I picked myself up, dusted myself off and started thinking about what else I could do to achieve my goals or whether I had to find alternatives to suit my lifestyle, personality and values. I decided I wanted to coach people. Help them with their personal growth, which would lead to them achieving things they never thought possible. I often found coaching in person challenging, as some days it was difficult to get out of the house to get to my clients, so I had to think of another way that I could help people and still earn an income, even if my body decided it wanted to have fun with me that day. We all want to earn money right? Then one day I had a revelation! Create an online programme for people whose chronic illness has caused them to become stuck. Those who are struggling to accept the tough blow life has thrown at them, those who want a career but have no idea where to start, those who are so down on themselves they’re on the verge of giving up and not trying anymore. I wanted to help such people because that was how I used to feel. Who feels it knows it yeah? Being self employed and getting clients consistently isn’t easy either, so when a couple of opportunities came my way to make a residual income I jumped at them. I’m no sales person, but a friend of mine introduced me to social marketing aka network marketing and he’d been doing really well and making a decent income just through sharing the business on social media and talking to people. “I can do that” I thought. So I did. And I’m doing pretty well. All I need is my mobile and internet access. I get training and support too. An added bonus is that it fits right in with my ethos of helping others, so it’s a WIN WIN! I never thought I’d be in a position to earn an income while helping others and it feels fantastic! So my message to you is, don’t give up on your goals and dreams! What alternative methods can you use to achieve your goals?



 

Actualisation – Step 6









What is self-actualisation? Have you achieved it? Do you believe you can?


Self-actualisation is not about where you are on the career ladder, how many followers you have on social media, whether you wear the most expensive designer clothes or drive the latest car.


It’s about realising your potential and doing what you are capable of.


This, of course will vary for each individual. For some it could be the desire to be what they deem to be an ideal parent, for others a world class athlete, artist or entrepreneur.


A valuable lesson I learned is not to compare myself to others. I am unique. My values, capabilities and personality are not to be compared to others, but rather to be acknowledged and embraced for what they are.


It is important to note that self-actualization (American spelling) is a continual process of becoming rather than a perfect state one reaches of a ‘happy ever after’ (Hoffman, 1988).


Although I have made a vast amount of progress, I know I am yet to reach my full potential, but it’s something I strive towards as I continue to grow and understand myself.


The key questions I ask myself when thinking about where I am in life and where I want to get to are:


Am I happy? If not, what do I need to change?


Am I living in line with my values? What do I need to stop doing?


Am I being the best mum I can be? Could my relationship with my son be improved?


Am I doing my best overall? If not, what can I do better?


Am I continuing to learn and grow? What further knowledge do I need?


 


What questions do you need to ask yourself? What steps do you need to take?


If you’re unsure and need a little guidance, feel like your mental, emotional or physical health are preventing you from becoming your true self, book a FREE chat with me to discuss how you can break through your barriers to living the life you desire by emailing me at info@cassandraacampbell.com or get in touch via my social media which you'll find at the bottom of the page.


Alternatively, if you feel you’re ready to take the steps, here's the link to the course

https://www.cassandraacampbell.com/chronic-illness

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WOW, I can’t believe Christmas is approaching and it’s almost the end of the year!

Christmas for me is all about family, so this month’s podcast topic is focusing on the challenges, dynamics and joys of family life with chronic illness.


Being a parent is a challenge in itself, let alone with the added component of chronic illness, and as I reflect on my experience of raising my now 20 year old son, I think about the thoughts and feelings I went through - and often still go through even though he’s an adult - about my parenting and the impact of my conditions on my child.


Guilt, failure, unworthiness, anger and fear counter–balanced by love, joy, hope, pride and accomplishment; a brief overview of my experience.

If you’re interested in knowing more about that journey, you can read about it in my book BrOKen available here BROKEN THE BOOK | Chronic Warriors (cassandraacampbell.com)


For many with chronic illness, the thought of becoming a parent is daunting and there are obviously a number of things to consider in regards to the impact on ourselves and our child. From pregnancy and labour to having the mental, emotional and physical capacity to raise a child, there’s so much to do and so much to think about which evokes a lot of ‘what ifs’.


What if it makes my condition worse?

What if I can’t do this or that?

What if he/she resents me?


It’s good to research how having a child and being a parent may affect you, but it’s also important to remember that everyone has a different experience and what might have been a challenging experience for some may be wonderful for others.

At the same time, I think it’s helpful to hear how others are facing the challenges and enjoying the blessings of parenthood.


With that in mind, in this month’s episodes I spoke with a single mum and a couple who are new parents to find out how they are coping with the topsy turvy world of parenting and chronic illness.


Part 1 Sunday 12th December with Katy Owings

Part 2 Sunday 26th December with Tim and Helen Cawley



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It’s International Men’s Day on the 19th so in honour of celebrating men, this month’s podcast theme is men living with chronic illness.


It is widely thought that men are taken more seriously and are more likely to be believed by the medical profession when it comes to illnesses. Fact or fiction I don’t know, but I do think that men don’t receive as much support as women from the wider community when it comes to health. Particularly mental health.

I question whether it’s because men in general don’t seek help or open up about their thoughts and feelings or whether it’s due to the societal perception that men are strong and don’t need it…


Let’s be real, most of us have grown up with a perception of what men should be like and their role; lifting heavy stuff, doing the DIY, are unemotional, are the main breadwinners etc.

As well as society having those expectations, men often bear the onus themselves, so when they find themselves in a position of not being able to live up to those expectations due to pain or anything else, it can have an immense impact on their self worth.


On speaking to several men who live with chronic illness, I’ve found that many have experienced situations where they have been unable or felt extremely pressured to be a certain way or do certain things, whether it be in employment or everyday life.

One guy in particular stands out in my often foggy memory; a strapping 6”3 marine who -

when he started to develop symptoms of Fibromyalgia and hEDS - found himself feeling vulnerable, frustrated and stressed. Not only due to the pain, but mainly due to the expectations and pressure from his peers and commanding officers. He felt he had to keep up a tough guy act; couldn’t show that he was in pain for fear of losing their respect and even his job.


None of this is to say that men have a harder time than women. I think it’s about putting things into perspective. We all have challenges and expectations thrust upon us, they often just differ depending on circumstances.

On the flip side, society has changed in many ways and some have left behind the old perceptions, expectations and traditions making way for new and different ideas.


On social media I’ve seen many disgruntled posts about men being believed and diagnosed more than women, which is often used as a beating stick for all men. Don’t get me wrong, it’s very unfair and frustrating (I say this as someone who was dismissed and undiagnosed for over 20 years). It’s important to remember that it’s not the fault of men, but the fault of the medical profession and society in general.


As individuals we have a propensity to focus and care about what affects us personally, which is a natural thing to do. However, in the spirit of progression, support and inclusivity in the chronic illness community let us acknowledge the challenges that men face, the collective similarities we have and encourage men to speak up, reach out and embrace support.


So I’ve shared some of my opinions and would be really interested in knowing yours, so feel free to comment.


To get an insight from those living it, I have two fantastic guests on this month’s podcast who share their experiences of living with EDS and M.E.


Part 1 Sunday 14th November with Simon Burnham

Part 2 Sunday 28th November with Nathan Horek



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