Forward
There are thousands of chronic health conditions in the world today, and many more are being
discovered every year. Even when the impact chronic health has on millions of sufferers
globally can change from person to person, you will often hear a similar story told about the
journey a sufferer takes to incorporate their illness or illnesses into their everyday life.
From the research and adjustment to adapt to health, managing appointments and having
to tell loved ones, work and life impacts, social isolation, and the grieving one goes through
when it feels like you are losing a part of yourself because of illness. Chronic illness has a
profound impact on the sufferer and their support systems around them.
So, what can we do? Can we still have a fulfilling life with chronic health? Are we alone?
For most of my life, I have suffered from chronic illness in many forms, alone. There was no
instruction manual to guide me through the severe impact that chronic health has on your
life.
This is my why.
I never want someone to feel like they have to take this journey alone, especially when
millions of others all over the world understand the complexities of living with chronic illness.
And many more want to help support sufferers through their journey with chronic illness.
This guide, along with the others I am building, is the culmination of all my knowledge and
everything I have learned and continue to learn about living with chronic illness. Through my
own experience and the experiences of others around me, I have created this guide to
chronic illness, so we can take this journey together.
You are not alone. And a global community of health sufferers and advocates is waiting for
you.
‘The Journey of Chronic Illness Begins With A Single Step’
About This Guide
The journey of chronic illness is a long and difficult one. Impacting all areas of life.
No one can really prepare you for the changes that happen when you’re hit with chronic
illness for the first time, or when your existing health conditions develop into new stages.
And though many of our experiences as health sufferers are similar, we all have to adapt to
our own unique circumstances alone.
One of the scariest things about health is not knowing.
When we can’t put a name to our symptoms or find the information and support we need, that can leave us with a feeling of powerlessness that hits us right in the soul.
It’s time to take control back.
It’s time to start living your life again. To achieve everything you set out to do, despite your
health barriers. And that’s where this, and the other guides and resources on my website,
come in.
This guide is designed to be a blueprint for the beginning of the journey, the first steps we all take
take when trying to get our health under control, while also providing support, information,
and even downloadable resources to assist in gathering all the information one needs to
move forward.
The goal: To help illuminate the journey a chronic health patient goes through as they learn
how to adapt their life to illness. From the first symptoms, diagnosis, medication side effects,
dangers of online research, experience in clinical environments, adjusting to life with chronic
health, and communicating health to others.
Here you will find tools, resources, tips, tricks, and more to support your journey with
chronic illness. And when you’re done here, you have a library of health conditions, support
documents, self-help guides, and more that you can access for free on my website.
Let’s Begin.
What is General Health?
In broad terms, health can be defined as a state of physical, mental, and social well-being
where bodily processes are working at their peak. Regular exercise, balanced nutrition, and
adequate rest all contribute to good health.
Health is a state of physical, mental, and social well-being and not merely the absence of
disease, so even a chronic health sufferer can have good general health while battling
chronic illness.
In this chapter, we will be discussing the six primary areas of general health and how each
can be impacted by stress and circumstances in life.
Some other areas of health can impact general health, such as
intellectual and occupational health.
Physical Health
Physical health encompasses the general condition of the body in relation to disease. A
healthy childhood, genetics, and working conditions are some of the things that influence
physical health.
This is the one we are the most familiar with, as it covers areas such as nutrition, diet, and
fitness.
Mental Health (Intellectual)
Mental health is often mistaken for mental illness and implies much more than the absence
of mental illness. Mentally healthy people understand that life can be stressful and ever-changing. They experience the daily range of emotions such as joy, love, satisfaction, anger,
and frustration, but they can cope with these changing emotions with continued
learning, problem-solving, processing, and creativity. Mental health governs our ability to
connect with ourselves and others on an intellectual level and to understand our own mental
health.
Emotional Health
Emotional health, much like mental health, is all about general psychological well-being. This
includes how you feel about yourself, the quality of relationships, and the ability to control
feelings and cope with difficulties.
Emotionally healthy people have control over their emotions and behaviour. In addition,
they can meet life’s challenges, build strong relationships, and recover from failures.
Being comfortable in one’s space and able to express emotions in meaningful and healthy
ways.
Social Health
Social health aims to enable individuals to behave, talk, and live collectively in interpersonal
relationships. Relating, interacting, and communicating well with others while being
comfortable in expressing who they are to others is a cornerstone of healthy social
interactions.
Environmental Health (occupational)
Healthy work and living environments, as well as respecting nature and gaining fulfillment
from our surroundings. Environmental factors that can negatively impact health are poverty,
pollution, unreasonable use of natural resources, unsustainable economies, and more.
When our environment is negatively impacted, so can our general health, as we rely heavily
In nature, to keep us healthy.
Spiritual Health
Feeling a purpose and connection to the world around you. Belief in a greater power or
guiding hand that can lead to a sense that life is meaningful. Spiritual health is now
recognised by science as a cornerstone to general health, as it is proven to improve physical,
mental, and emotional health through reduced stress, heart disease, depression, and high blood pressure, and even some cancers.
Maintaining care and balance between all these areas can lead to a happier, healthier life.
and each area requires a common key component:
Knowing who you are
To achieve general health and wellbeing, being comfortable in your own skin is key to
balancing all these areas and maintaining them long term. This can be difficult in a world
where we have so many people telling us who we should or shouldn’t be. What we should or
shouldn’t be doing. And yet, it is the key to a happy, healthy life.
When these are in balance, an individual can move through life and function well,
performing daily tasks, work, social life, and hobbies with ease. And they are also able to
cope with the daily challenges and stress these activities bring.
So, what happens when one or more of the above gets thrown out of balance?
There can be multiple causes that can lead to one of the six health types being disrupted
and/ or impacted. Sudden changes in circumstances – loss of work, change in social and
personal relationships, loss of a loved one, drastic move, chronic health, accident, or injury,
etc, can lead to not just one but multiple areas of health being impacted.
Let me give you an example.
Susan has just lost her father in a car accident and is going through the stages of grieving.
Because of all the time she has had to take off work, she has lost her job and now has
financial hardship, which results in her developing mental illnesses like depression.
As she is trying to process the loss of a loved one and now her employment, she no longer has the
motivation to work out, and her diet has turned to binge eating unhealthy food, which has
led to weight gain and her physical health being negatively impacted.
Through all of this loss and grief, she has become socially isolated as she no longer has the money or inclination to leave her home to socialise. And her relationships with her friends and family are becoming
more strained as time goes forward. As she has also lost someone dear to her, she begins to
question her faith and what she is doing with her life. leading to even more uncertainty, and
whether life is even worth living at all.
This is a very brief example of the cycle someone can go through when experiencing drastic
changes to their life that can impact all areas of their health. And yet, many of us can relate
to the example above as we have all experienced a disruption to our health at some point in
our own lives.
When discussing general health, it is easy to just focus on diet and fitness, as these are
cornerstones of good physical health. And yet, these two are usually the first to be disrupted
when the other health areas are out of balance.
So how can we maintain good general health?
Awareness and education are vital, as well as support for stress management. Being able to
cope healthily when stress impacts your life is essential when balancing your general
health, and we will deep dive further into stress management in later chapters.
Stress can impact anyone at any time, and it can be quite the balancing act to maintain
general health, especially when it is impacted by chronic illness.
In the chapters that follow, we will be discussing the many areas that make up general
health, Mental Health, and the impact chronic illness has on every part of our lives.
The Search for Answers
When discussing chronic illness, multiple causes and factors can cause someone’s health to take a bad turn.
For some, the symptoms of a health condition or disease can be subtle, developing over years into a more serious condition. While others experience the full brunt of a health condition out of nowhere, such as from an
accident, trauma, or severe reaction to a virus.
When it comes to learning to live with chronic illness, we will cover this further along in this
guide. For now, we will discuss the first stage of chronic illness: Symptoms.
Symptoms
Chronic illness is a vast topic to discuss and can have many causes. For those with extreme circumstances, a diagnosis is usually received quickly, and immediate medical treatment begins. For many others, chronic illness is a subtle thing that develops and grows over time. So how can you know if something is not quite right?
And where can you go to find the answers you need?
First, you will need to analyse your body and the symptoms you are experiencing.
Ask yourself the following questions:
1) What are the symptoms? (making a list can be helpful)
2) How long have I had these symptoms for?
3) Have my symptoms become more severe in that time frame?
4) And finally, can I wait to see a doctor? Or do I need emergency help now?
As an example of how you could complete the above questions, I will put my own responses
below.
1) What are the symptoms?
I am feeling nausea, bloating, and really bad headaches that don’t go away with painkillers.
2) How long have I had these symptoms for?
I think I have had them for about 2-3 months.
3) Have my symptoms become more severe in that time frame?
It feels like it is becoming a bit more severe, but it’s sometimes hard to tell.
4) And finally, can I wait to see a doctor? Or do I need emergency help now?
I am feeling extremely ill right now, but not so much that I need to go to the hospital. Let’s call
my doctor.
Be honest with yourself. It is better to be told by a healthcare professional that you don’t
need emergency help, then to wait and potentially have a health crisis.
Once you have made this list, you can then review if you need to see a healthcare
professional. If your symptoms are getting worse or becoming more numerous, see your
doctor straight away so they can begin the journey of discovery to find out if your current
condition is acute or chronic.
Acute and Chronic Health
When understanding the medical side of chronic illness, the terms acute and chronic come
up, and there is a big difference between them. An acute condition is something that will pass either on its own or through medical intervention, such as medications like antibiotics.
Where a chronic health condition is classed as chronic when it persists for longer than 4-8
weeks, and the patient will need constant medical intervention and lifestyle adaptations to
improve their life.
How can you know if you have an acute or chronic health condition?
See your doctor.
Sounds straightforward, I know. But you probably won’t be surprised to hear how often an individual at the beginning of their journey with health will rather consult unreliable sites
and articles online, as a way of avoiding the doctor.
Self-diagnosis is incredibly dangerous, as you may be ‘treating’ yourself for a condition you
don’t have. And/ or potentially ignoring a very real health condition that requires medical
intervention, as many can claim to be ‘health experts’ after a few Google searches.
It’s natural nowadays to consult ‘Doctor Google’ to find the answer we seek in life.
But the best advice here is to trust your gut and your body. If something feels wrong, see a healthcare professional and get it confirmed.
From there, you can begin to take control of your life and take steps to manage your illness.
But is getting diagnosed with a health condition really as simple as just seeing a doctor?
Unfortunately, for many health sufferers, the journey can be a long one. Taking many
different detours before finally getting the answer one needs.
In Chapter Three, we will discuss diagnosis and why, for some, getting diagnosed with a health condition can be a battle.
Learning Severity
In the previous chapter, we talked about general health and the early signs of disease,
symptoms. Now we will learn about severity and the difference between mild, moderate,
and severe health conditions that can contribute to delays in diagnosis.
To begin, we will break into two different areas to discuss the beginning stages of chronic
illness.
New and existing health sufferers
New health sufferers can have two primary ways they are impacted by chronic illness.
The first is slow and can build over time, while others will be impacted very quickly.
When chronic illness strikes for the first time, it can be incredibly traumatic.
Living a healthy life one moment and then having that ripped away as a new and scary illness takes over can
be incredibly destabilizing to an individual’s life.
Existing health sufferers, however, tend to be accustomed to receiving bad news when it
comes to their health. You will be hard-pressed to find a sufferer who only has one health
condition, as many will have multiple health conditions, both mental and physical. An
existing health sufferer can receive multiple diagnoses over their lifetime, and each
diagnosis can feel like the first, as it can come with a new set of circumstances and
challenges the sufferer will need to overcome.
Whether the beginning of the illness is subtle, getting worse over time, or severe like a car
accident or trauma, in all cases, a sufferer will need to begin their research to learn about
their health condition, so they can begin to adapt their lifestyle to incorporate this new set of
circumstances.
What is severity?
In medical terms, severity is determined by how active or impactful a health condition is for
an individual. The common terms for this would be mild, moderate, severe, acute, chronic, and, in specific cases, terms like benign and malignant. Paired together, terms like
these give medical professionals a picture of the type and severity of the diagnosis, such as:
The patient has “moderate chronic pain”, “a mild benign growth,” or “an acute severe
puncture wound,” and so on. These are medical identifiers to help healthcare professionals
treat their patients and should not be confused with how a sufferer interacts and feels about
their own health conditions.
The way a healthcare professional categorises your health is purely based on the medical,
not the personal toll it takes on your life.
Personal health is the daily struggle that a sufferer endures when managing their illnesses,
and even when someone medically has mild to moderate health conditions, the impact
The conditions have on their life can be severe.
Diagnosis
Depending on the kinds of symptoms and severity of symptoms a sufferer is experiencing,
this can affect the amount of time it takes to get diagnosed. So how do you get diagnosed
with a health condition in the first place?
When thinking about chronic health, we focus on personal impact and the way symptoms
affect us personally. Medically, it can be exceedingly difficult to diagnose a health condition.
Especially when the symptoms one is experiencing could be indicative of dozens of health
conditions.
An example is gut issues. Someone experiencing multiple symptoms of gastric pain, nausea,
bowel changes, and bloating could be referring to multiple health conditions. And if they are
experiencing medically milder symptoms, it can take some time for your doctor to exclude
other conditions to identify what exactly is affecting you, as opposed to someone that is having a severe health condition that could be life-threatening.
Something to remember, lovelies, is that without a sufferer, doctors wouldn’t have the
knowledge and tools they need to save lives and wouldn’t be able to learn about health. And
without healthcare professionals, a health sufferer would have little chance of being able to
support themselves and treat their health conditions.
The key piece of advice here is patience. As hard as it can be to suffer through the pain and
impact of the symptoms you are experiencing, you will need to work with your doctor to
achieve a diagnosis. And if you feel you are not being supported by your healthcare
professional, seek a second opinion.
Only through investigation and cooperation with your doctor can you achieve a diagnosis
and get the treatment you need to manage your illness. Whatever form it takes.
Once you have received a new diagnosis, or you feel you and your doctor are close to one, I
have created a document that you can use with your doctor to ensure you’re getting the
information you need to take home with you. It’s a little questionnaire that you can print and take with you to make sure you get all the essential information you need to begin
tackling your health condition at home. There is an example below of what the documents
entail, and you can also download them directly from my website!
You can find all support documents, like medication questionnaires, new treatment plans,
surgery, and even a health history document to store all your information on my website.
In chapter four, we will discuss medication/ treatment plans and what you can expect.
New Illness Questionnaire
So, you have a new diagnosis and are unsure what questions to ask your doctor.
Check out my list of questions below, and add your own!
• What kind of illness do I have?
• What is the severity of my condition?
• What are the medications or treatments for this condition?
• What are the long-term impacts of my condition?
• What follow-ups will I need to monitor my illness?
• Are there foods or supplements I need to take/avoid while on these new
medications/ treatments?
• What organizations are out there to support me with my new illness?
• What happens if my symptoms get worse or don’t improve between now and my
next appointment?
• Is there anything else I need to know about this illness before I leave today?
Side Effects
Now that we have received a diagnosis for our health condition/s, we need to know what
treatment and/ or medication is needed to manage the illness so we can achieve remission.
Above, I provided a document questionnaire that you can take to your doctor so you
can get all the information you need on your illness, your treatment plan, and potential side
effects of any medications you may need to take. I have created another document you can
take to your doctor that specifically asks about new medications and their potential side
effects. I recommend taking this with you to your doctor when they are beginning a new
treatment plan, and you can also download this from my website!
Example below.
New Medication Questionnaire
So, you have new medications recommended by your doctor, and you want to know all the
important questions to ask before taking them? Check out my list of questions below, and
don’t forget to ask your own!
• What are the side effects of these medications?
• When should I take them? (time of day/ with meals/ what I shouldn’t take with
them)
• What potentially negative side effects should I look out for while on these
medications, and when should I call a doctor?
• Are there foods or supplements I need to take/avoid while on these new
medications/ treatments?
• Why do I need this medication?
• Is there anything else I need to know before leaving today?
Once you have the information about your illness and treatments from your doctor, it’s the
time to understand the dangers of online research.
Online Research Dangers
Above, we discussed the dangers of self-diagnosis that can lead to ineffective
treatments. Now we will discuss the dangers of treating your own health condition without
the support of your doctor.
When being diagnosed with a new health condition, it is perfectly normal, even acceptable,
to research your health and gain all the knowledge you can to help prepare you for the daily
challenges you could face.
However, in an age where anyone can become an ‘expert’ after a few Google searches,
researching your illness online can lead to some very misleading information. How many
times have you seen an article or ad claiming to have a magic pill, or special diet, or
alternative therapy you’ve never heard of that could cure a health condition?
When chronic health strikes, it can be a terrifying time. Something that every chronic health
sufferer will tell you is that at some point in their health, they looked for a cure. A way out of
their circumstances. And though some will find remedies they otherwise wouldn’t have
thought of, very few of them would say any of the above FADS worked for them to cure their
illness completely.
These fake ads are designed to prey on the vulnerable and the suffering for only one reason:
Profit. And it’s an easy trap to fall into when what they are trying to sell you is hope.
So, how can you tell a reliable source from a fake ad? And how can you research alternative therapies to the ones your doctor/s is giving you safely?
First, any reliable health site will have sources stating who wrote the article, published, and
will list a name or multiple names of healthcare professionals who have reviewed and
approved the published article. Many of these sites will also only provide medical
information about the illness, not try to sell you some miracle cure.
Second, speak to your doctor about any alternative therapies you may be interested in. It
has been found that many alternatives or complementary therapies to pharmaceutical
medicine can potentially help treat and manage certain chronic health conditions. But you
should always consult your doctor before commencing any new diet, supplement, or
therapy, as this may have an effect on the current treatment your doctor has for you.
It can take more than one healthcare professional to treat your health conditions. And
consulting other qualified health professionals (like naturopaths) can help to support you on
your journey with health. Just do your research, and make sure you consult the right
professional for support.
Medication Tracking
When commencing a new treatment plan, it can be a pretty daunting task. Sometimes it can
require scheduling to incorporate the times you have to take the medications, as well as
monitoring yourself for any side effects that may come.
When you’ve been living with a chronic health condition for a long time, this becomes almost second
nature. But for those just starting, it can be very confusing to learn how to monitor
yourself and to differentiate between your current symptoms and the side effects of
medications.
At this point, we will have received the information from our doctors that we need for a
treatment plan, and we will have conducted some research on our health, as well as the
medication we are taking. Now, we can track our progress with our illness.
Here, I have another support document for you.
Below, you can download a medication tracker that covers 30 days of self-monitoring. You
can download this document as many times as you like from the website and list multiple
medications on there if needed. This can really help you to not only monitor yourself, but to
report accurately to your doctor how you’re progressing with your treatments, and if there
may need to make any changes.
Update this document on the computer, print it, and put it on your fridge, whatever works
for you!
Don’t forget to check out the New Medication Questionnaire so you know what to look out
for!
Preparation
In this chapter, we will be discussing surgery and more intensive treatments, how we can
prepare for them, and the experience you may have while staying in a medical institution.
Unfortunately, in some cases, a health sufferer will need more intensive treatment to
manage their health condition.
There can be multiple reasons why someone will need
surgery, and this will need to be addressed with the healthcare professionals treating you at
the time. However, there is another aspect of medical treatment we may not consider
straight away, as we are focusing on the primary health issue. And that’s hospitalization.
Hospitals
To better understand what staying in the hospital will be like, whether you are in an emergency or
being admitted, we need a better understanding of how healthcare professionals triage
patients.
As an existing chronic health sufferer, there are things you learn very quickly as a patient in
hospitals that you wouldn’t otherwise know when experiencing chronic health for the first
time. One is just how quickly you will be dismissed from an emergency department if they
can’t find a serious medical problem. Another is the mental health impact of having multiple
doctors treat you as if you’re being psychosomatic, or even pretending to have a problem, so
you can get attention from health staff. There are a few important reasons and causes for
these two primary issues.
Being Dismissed
A story you will hear often among health sufferers is that a health condition they had took
years to diagnose, as their doctors focused on their major health issues or dismissed them
entirely when they couldn’t find anything, and this can lead to anger and a feeling of
abandonment by healthcare professionals. A patient may feel the doctor doesn’t care
enough about them to treat them properly, or they are too busy with ‘more important
patients to give the time needed to investigate your unique circumstances.
Something to remember is that doctors only have a limited amount of time allowed to treat
a patient, and emergency departments are designed for acute patients, not chronic health
sufferers. In medical environments, healthcare professionals will categorise patients based
on the severity of their health condition/s that have made them present to hospitals, so they
can treat more urgent health conditions.
I cannot stress enough just how demoralizing it is to have a healthcare professional tell you
there is nothing seriously wrong when you feel really unwell and need help. And though it is
easier to blame healthcare professionals like doctors and nurses for this, it is the system that
doesn’t support chronic health sufferers properly. Why this is and how it can be changed is a
conversation for another time. In this chapter, we will discuss how you can prepare for
hospital visits and surgery.
Surgery
When thinking about chronic health, the prospect of having surgery or even other invasive
examinations like endoscopies can be a terrifying concept. And there will be many questions
that cross your mind when preparing for surgery.
To help you gather the information you need to help you prepare for surgery, I have created
a questionnaire below that you can download and take with you.
Surgery Questionnaire
• Why are we performing the surgery?
• What are the benefits once I’ve had the surgery? What is the goal of this surgery?
• Will I need any follow-up surgeries?
• How long will recovery take from this surgery?
• What are the potential complications?
• What are the treatments needed once I’ve had the surgery?
• What do I need to look out for once I’m out of the hospital?
• When should I contact my doctor if there are complications?
• Is there anything else I need to know before surgery?
Coupled with this questionnaire, following your doctor’s orders is vitally important for
after-care when you have invasive examinations or surgeries. And any questions
should be asked before and after surgery, so you can be equipped with the tools you need to
manage your illness at home once you’ve been discharged.
But can you be discharged too soon?
Many health sufferers know through personal experience that the second they can get themselves
out of a hospital bed, they will. And this can again feel like healthcare professionals don’t
care about you or your health. As it has been said before, healthcare systems are
notoriously underfunded and understaffed, so they have to triage patients based on who
needs the most immediate care. If they feel you can manage at home, maybe even with
assisted care from external nursing programs, they will send you home, even when you
don’t feel ready to go.
It is a healthcare professional’s responsibility to get you well enough to go home, and once
you have the tools you need, you have to take ownership of your own health. As you will
have to be the one to manage it at home.
What I’ve just stated is one of the hardest realities of chronic illness that a sufferer will face.
Sometimes, there are only so many doctors can do to get you well enough to be able to
cope with life. And that you may never have the life you had before chronic health.
So, what can you do?
You’ve had your illness/s diagnosed, your medication and treatment plan prescribed, and
you’ve had all the necessary examinations and surgeries needed to help bring your illness
under some kind of control.
But how do you live with chronic illness?
In the next chapter, we will take a deep dive into the mental health impact of chronic illness and how we can begin the journey to living with chronic illness.
The New Reality
So far, we have discussed the physical process a person will go through when trying to take
control of their health. Getting diagnosed, treatment plans, and the journey one takes to get
their health under control. When you’re new to chronic health, most will think this is where
the process ends, and our perception of health is that when you get sick or injured, you get
treated, recover, and then you will be fine.
Unfortunately for millions of people all over the world, this is only the beginning of their
chronic health journey.
In this chapter, we will talk about the reality of chronic health, the mental health impact, and
will seek to help you through the transition of incorporating chronic health into your life.
New Reality
When battling chronic health issues for the first time, we can underestimate just how much of an
impact health has. Especially when we have never needed to focus on it before, it affected us
directly. Up to this point, you have probably been inundated with a lot of information telling
you what you should and shouldn’t do with this new set of circumstances, which can be
incredibly overwhelming.
When handling stressful, fast-changing situations, we can compartmentalise exactly what is
happening so we can have quicker reaction times to the situation at that moment. But what
happens when you finally get some quiet time to process all that has occurred?
Fear
After all the investigations with healthcare professionals, you will be sent home to manage
on your own. Before now, the fear and uncertainty have been focused on the mystery of what
health condition is affecting you. Now you know what it is, but you might not know just how
it will affect you in everyday life. This can be terrifying. The loss of control one can feel when
facing a chronic illness and the isolation that follows is an area of chronic illness that isn’t
spoken about enough, as it impacts everyone differently.
For existing health sufferers and those who have been sick all their lives, chronic illness is a
fact of life and is naturally adapted into routine. This doesn’t downplay the impact it has;
there will just be more of a level of acceptance with those individuals who haven’t known life
without chronic illness in it.
For new health sufferers, there can be an abundance of denial when facing the daily reality
of chronic health. And you will often hear from those who have lived a life with normal
health that there must be a way, a cure, or a treatment that will work to fix the problem. This
is natural, and by no means should we dismiss someone who feels this way about their
health. But it can be a challenge communicating the reality of chronic health with someone
who believes they will one day be ‘cured’ of their health condition.
Eventually, though, we all come to the same realization. No matter what walk of life we come from.
This is never going to go away...
Whether the above statement is factually true or not isn’t the point of why it needs to be
said. The thought will cross a sufferer’s mind at one point or another. ‘Will it ever end?’ and ‘why me?’ are also common questions a sufferer will ask themselves in the beginning of
their journey with chronic health.
There is a reason why we call chronic health patients sufferers. The daily struggle of living
with pain, sickness, and loss of self can be demoralizing to an individual, and they will need
care and support to help see them through this time. Some health sufferers will recover
from their condition, while others will need to incorporate this new set of circumstances into
their life.
Is there hope?
When grieving the loss of who you were to become who you are now with chronic health,
there can be a feeling of hopelessness that can permeate throughout your whole life.
Affecting your friendships, relationships, work, hobbies, and all areas of life.
However, having chronic health problems doesn’t mean your life is over. Like anything else in
life, chronic health will bring its own set of struggles and hurdles to be overcome. But it can
also provide a profound perspective on life that you may never have considered before.
Having to overcome this adversity and struggle can make you a powerful individual.
Someone who truly understands just how bad life can get and won’t let anything stand in
the way of achieving their goals. You fight a battle every day that only a special group of
individuals understands, and that makes you powerful. You appreciate the good days when
they happen and cut yourself slack when you can’t manage the next day. And because of this
newfound perspective, you will have the ability to tackle whatever life has to throw at you.
You will sometimes feel defeated. You will feel like you just can’t do it, or there is no point to
you even trying. You will be misunderstood by others who have never had to struggle with what you have struggled with. And you will have to explain yourself and your health millions
of times to others who will have no concept of what you are living with. Your life can be
changed forever by chronic illness, and the mental health impact of having to fight this
battle can leave you feeling defeated and alone.
This is the reality of chronic health. But there is something I want you to remember above
everything else...
You are extraordinary. And you are not alone. Millions of sufferers around the world know
what you’re going through. A chronic health diagnosis may differ from person to person, but
the impact chronic illness has can be similar across all areas of health.
If you are unsure of where you can find the support you need, start with social media. ThereThere
are many dedicated groups out there that support sufferers with specific health conditions,
and this can help you connect to a new support base.
Researching organizations that represent your health conditions is also another great
resource for you. Many will provide information, services, and communities you can join.
Just make sure you check their backgrounds to ensure they will provide the support you
need.
You are not alone
So much can change when chronic health becomes a factor in your life. And it is important
to have the right people and support networks around you to help you fight the battle of
chronic health.
In chapter seven, we will start to learn how we can communicate health to others, and the
kinds of questions you may get asked about your chronic health.
The Hero's Journey
You Are The Hero Of Your Own Story
In this chapter, we will learn how to communicate our health, the kinds of questions we may
get, and the change one can experience in their social support groups when life is impacted
by chronic health.
To start, we’re going to talk about how we communicate health.
Communication
I know how hard it is to field questions about your health. Chronic health is a deeply
personal part of who we are, and to be frank, it can be incredibly uncomfortable to discuss
with others. But when the conversation needs to be had with friends, loved ones, and new
people entering your life, here are some tips to help you do so.
However, there is a difference between someone trying to understand and getting it wrong, to
someone who doesn’t care enough to really listen to you.
But how can you tell the difference?
The Difference
Below, I will give you some examples of the kinds of questions you may get asked by others
and from here, we can break down the differences in how a question is asked, and what the
intention of the person who is asking them is.
Bear in mind that with some of the below questions, someone may be asking what appears
to be a nice query, but they are doing this to be polite, not because they actually want to know anything. Tone is a particularly important tool here, and you will need to watch for this
and their body language to work out if they are genuine or not.
Neutral questions – could go either way
‘What is ______ insert illness?’
‘Is that illness like___ insert illness?’
‘Have you tried ____ insert treatment, diet, supplement suggestion?’
‘Wow! Is it really that severe?’
‘I’ve seen this article/ Facebook post/ heard this story about a treatment/ cure, etc that helps
____ insert illness. Have you tried it?’
Genuine questions
‘How does your health affect you?’
‘What can we do to help you manage your health?’ (diet, routine, habits of behaviour)
‘Where can we look to find more information about…’
Not interested questions
‘Seriously? It can’t be that bad.’
‘But if you just eat right and exercise...’
‘You should just go see a doctor; talking about it won’t fix anything’
Don’t Get Offended
When talking about communicating health, the stories I hear the most often will be along
the lines of: ‘they don’t understand me’ or ‘I am sick of repeating myself and them not
understanding’, and so on. Health is complicated. Especially when you factor in that every
health sufferer is unique and will face similar but also different challenges with their own
health. Just like we have trouble relating to someone with a different career or lifestyle than
ourselves, if you do not live with a chronic illness, it can be harder to relate to someone who
does. So, we need to have some compassion and understanding as sufferers, that others
may not ever understand what we are going through.
The above questions are just some that I find are frequently asked, and as you can see, some
questions fall into a bit of a grey area.
One of the hardest things to do as a sufferer is to communicate our health in a way
that others will understand, so we don’t have to repeat ourselves. But it is a fact of life
that you will probably have to repeat yourself many times to others when communicating
health.
Ignorance is Bliss… Apparently
Try not to get offended when you receive ignorant or dismissive questions about you and
your health. This comes from a place of ignorance, and it is not your job to convince another
person that you are unwell. You will never force someone to change their perspective, and
you will only hurt yourself trying to do so. This is the time when changes in your social
structure may occur, which can be a very destabilizing factor in managing your health.
When you already feel like you’ve lost so much through the changes chronic health brings, the last
thing you want is for your social friendships to be impacted by health.
But believe me, this is one of those times when you learn who your real friends are.
Support Networks
One of the first external factors impacted by chronic health is your social group and family.
This is due in part to the new challenges you will face with chronic health. If you lived a
highly active lifestyle and socialised often before your chronic health adversely affected you,
you may notice that not only do your physical and mental limits change, but your priorities
may shift too. The things you were interested in before may hold no interest to you now, or
you may be physically incapable of doing those activities anymore.
This can be one of the toughest stages of chronic illness, as you may feel you are losing a
part of who you are, a piece of your identity, and in turn, the life you once knew. And this can
be even more severely felt when your social friendships and relationships are tied to these
lifestyles and hobbies.
But just like any major change in life, priorities shift. Starting a new job, moving to a new
house, transferring schools, and any change that requires reevaluation in life can impact your
social networks. The difference here is that the changes that happen may be beyond your
control, and this can be a hard thing to reconcile. Especially when your existing social group
feels you’re the one who has changed, and they may feel they can’t relate to you anymore.
And you may feel the same about them.
A vitally important step in the journey of chronic illness is to know when to hold on and
when to let go. If a friendship isn’t working with you and your new set of circumstances, then they may not be the friend you need with you going forward. Life is about change and
adaptation, so by all means, give your current friends and relationships the best chance to
grow and change with you. But realise that just because you have to change, it does not
always mean that they can or will. Make room in your life for the right kind of people who
will understand and support you on your journey.
Easier said than done, right?
But believe me, allowing yourself to grow and change with your illness will also allow your
old friends to grow and adapt to their own lives and priorities. The worst feeling is to be
surrounded by people who are supposed to be your friends and feel completely alone.
Be honest
Letting go of the things we care about can sometimes feel like an impossible decision. Our
instinct is to stick with what is known, as venturing into the unknown can be a terrifying
concept. It’s here that I have an important piece of advice.
Don’t downplay your health to make others happy
Lying to others and yourself about just how serious and/or impactful your chronic health can
be is a recipe for disaster for one major reason: You can’t keep the lie up forever. Your health
will wear you down until you’re forced to accept it, and the friends you have desperately
tried to hold on to through this change will be pushed away from you. If a person isn’t
allowed to understand who you are, how can you hope to cultivate a strong, healthy
friendship?
This is an unfair reality of chronic health, and one every chronic health sufferer understands.
But like I said before, once you make the space in your life for your current friendships to
grow and change with you or for other healthier friendships to come in, you will be much
happier for it.
You Are The Hero Of Your Own Story
By sharing our stories and educating others around us about chronic health so we can
better support us on our journey. But, and this is a BIG but, not everyone is going to have the
capacity to understand you and your new health circumstances. This is a challenge we all
face. That not everyone is going to understand you. And it’ll be incredibly frustrating and at
times, upsetting to deal with.
But once you begin to share your story, you will be amazed at how inspired others can be
become by hearing your story of adversity.
Look how far you have come!
In the next and final chapter, we will be reviewing what we have learned so far, so we can
gather the tools we need to move forward into a brighter future.
Where do we go from here?
Before we finish off this guide, let's summarise what we have learned so far, and gather the
tools we need to move forward into the next stage of our lives.
Chapter One – What is General Health?
In chapter one, we began with a firm understanding of what general health is, the areas it
covers, and how to keep the balancing act between them, as this is the first step on the
journey of health. We learned about the major health groups: Physical, Mental, Emotional,
Environmental, Spiritual, and Social, and how the delicate balance of these could be
disrupted by stress.
Chapter Two – The Search for Answers
In chapter two, we learned that life throws many surprises at us, and while we cannot predict
the outcome of all situations, we can take control of how we respond to them. This chapter
focused on the initial stage of chronic illness: symptoms. And provided some tools on how to
identify if something is wrong.
Chapter Three – Learning Severity
In chapter three, we took a closer look at diagnosis and the journey we take to get a
treatment. We learned the difference in severity from mild, moderate, to severe, and how
this impacted diagnosis time frames.
Chapter Four – Side Effects
In chapter four, we asked the question: Why do we have medication? We learned the
meaning of side effects and how you can track yourself to monitor the medications and
report correctly to your doctor. We also looked into the dangers of self-treating without your
doctor’s knowledge and of online research.
Chapter Five – Preparation
In chapter five, we explored clinical environments and treatment in hospitals. We learned
about the tools we could use to prepare for those treatments and surgeries. And we
explored the concerning topic of why a hospital may send you home sooner than you think
and what you need to monitor once you're home.
Chapter Six –The New Reality
In chapter six, we discussed the mental health impact of chronic illness. The thoughts that
may run through your head, the overwhelming information overload of your new
circumstances, the fear, and what you can do to help you adjust.
Chapter Seven – You Are The Hero Of Your Own Story
In chapter seven, we began the conversation about how to tell others and your loved ones
about your new circumstances. We also discussed the kinds of reactions and questions you
may get, how you may react to their response to your health, and what explaining tools you
can use to educate others. More importantly, we discussed why the compulsion to lie will be
very strong, but that honesty is the best policy for building stronger and more
understanding relationships.
Now we come to chapter eight – where do we go from here?
Throughout this guide, we have discussed the many stages a person can go through when
experiencing changes in their health. From the first symptoms, diagnosis, medication side
effects, dangers of online research, experience in clinical environments, adjusting to life with
chronic health, and communicating this new set of circumstances to others.
In other guides, I will be taking deeper dives into subjects like mental health, addiction, and
the grieving stages, as they require a more in-depth discussion than what we have talked
about today.
Now we come to the final step of the journey: Moving on.
When we begin to understand the impact chronic health has on ourselves and our loved
ones, it can lead to struggles and hardship. But it can also develop a unique perspective on
life and how we live it.
The daily struggles associated with illness are uncountable in number and variety. From
simple things like getting out of bed, showering, and making a coffee. To dining out,
exercising, and group activities. These things we once did with no real thought have
suddenly become some of the toughest challenges we face, and that’s not even including
the mountain of responsibility and routine that comes with managing chronic illnesses.
The addition of new and sometimes scary medications, treatments, therapies, surgeries,
appointments, and daily lifestyle changes makes for a busy schedule on top of the ‘normal’
things we are expected to do as functioning humans.
And yet, somehow, we find a way.
Despite all the hurdles, challenges, and changes that happen in life, if you can even find a
reason to get out of bed in the morning, you’ve already made your biggest achievement of
the day.
Sounds ridiculous, right?
You may be thinking at this point: how is getting out of bed the biggest achievement of the
day, when we have many responsibilities like work, study, bills, etc, to manage, that are more
important?
And yet, finding a reason to push through the barriers chronic health forces on us, choosing
to fight that invisible battle with your body is a true testament to your inner strength and
perseverance.
Some days we will succeed in this battle. Going out and achieving our goals despite those
barriers. Other days, we just physically can’t overcome those obstacles because of our
health problems.
This is not a failure. You are not a failure.
The ‘getting out of bed’ example is an easy one to relate to, as it is a conscious decision we make
have to make every day.
But as chronic health sufferers, there are many obstacles that you will come across that a
healthy person will just have no concept of. And it can become very easy to compare our
circumstances to others, especially when we feel we are not as successful or productive in
comparison. Even when compared to health sufferers like us.
It is vitally important to remember not to compare yourself, your health, or your
circumstances to someone else.
There is a reason why treatment plans are tailored to you, not to an entire group of people
and the same can be said for the daily productivity we all try to achieve through tasks,
routines, and habits.
This brings us to the final part of this guide:
How do we cultivate positive routines so we can achieve our goals?
Depending on who you are, what works for you, and what goals you wish to achieve, this will
determine the correct routine and structure to support you in building daily goals and
staying motivated to achieve them.
Before we can make any major goals in career, social, and hobbies, we need to cultivate
healthy daily routines.
Below is a list I use to help me get motivated in the morning, and you can download and
adapt this list to better suit your routines and habits as you see fit!
Fortunately, the internet is also awash with tips, tricks, daily practices, and in general, advice
about how to get motivated.
Once we start to adapt our daily routines, we can not only feel a sense of achievement, but
we can also begin to make even bigger goals to start changing our lives for the better.
But where to begin?
Before we can go any further, there is an important question you need to be asking yourself:
What do you actually want?
As we discussed in prior chapters, the goals you had before your illness may not apply to you
anymore. For whatever reason, your health has placed barriers on some of your choices, and
this is impacting your motivation to do what it is you actually want to do.
There are a few common ways to get motivated, and I’ll list them below:
● Listen to your favourite genre of music
● Go for a walk/ run first thing in the morning
● Buy the food you would actually eat, not what seems healthier (dieting tip)
● Make a to-do list every day
● Connect to groups/ people who share your interests
But at the end of the day, you are the one who has to want these goals bad enough to make
them happen, no matter what life throws at you.
As we finish up this guide, I have one final piece of wisdom to impart. And it’s a quote that I
often think to myself whenever I feel defeated, or unmotivated to get out there and achieve
my goals:
“If you’re going through hell, keep going.” – Winston Churchill.
Every day, you fight an invisible battle that only a special few understand. This makes you
stronger than you think, and you should be proud of all that you have achieved to get this
far.
The journey doesn’t end here. And you didn’t come this far, just to come this far.
I hope this guide has helped in illuminating the path of chronic illness, and the unique
journey millions all over the world are taking right now to incorporate illness into their life.
I wish you the best of luck, and know that if you ever need support, you can reach out
through any of my socials to connect
Loveyabye!
Sharnii Elliott
Free Downloadables
After many years of battling chronic illness and having to make constant adjustments for my health, I have learned that sometimes there just aren't enough resources out there to help people who struggle with their health, whatever form it takes.
After trial and error and some advice from others in my circumstances, I created these documents that have helped me manage my health, keep track of my treatment plan, and create goals for the future.
I even created a Health Library of Chronic Health Conditions where you can research and learn more about common illnesses!
