How to Deal with Our Ever-changing Body within Chronic Illness

When our bodies seem to take control in such a negative way, we find ourselves holding onto the idea that we will be able to grasp onto a moment when our bodies are completely back on track. We believe we could potentially get to our normal lives and maintain that level of health as we keep moving forward within a certain standard of life. With chronic illness our bodies are constantly adapting to our surroundings, our intake, our personal thoughts, our experiences and the actual realities of our body functioning differently. Sometimes we are able to and capable of finding that moment, but the majority of the time people tend to find themselves holding onto those moments for a little bit before they disappear again, looking differently each time they appear. Each element of our bodies is going to respond differently, making it so we don’t know how it will respond to treatments, how it will respond to the actual illness itself, or how it will respond to life. Yet we hold onto an idea of what we believe our own lives could look like, along with figuring out how to live those lives within the moments we get, while trying to figure out what is really going on.

What does the idea of “our bodies are constantly changing within chronic illness” actually means?

Our bodies are ever-changing for a multitude of reasons: getting older, what we expose ourselves to, how great of a steward we are of our body, how our body shifts and responds to different elements, what treatments we try, what our symptoms actually look like, what the progression of your chronic illness looks like, and more. We may even have days or weeks where we feel like we may have figured it out and then all of a sudden something changes or shifts. Chronic illness creates a reality amongst us that makes us understand dramatic changes within ourselves. Good days versus bad days, even good moments versus bad moments.

Even when we feel like our bodies are a complete mess and we try to press through those moments in fast forward, we still have the hope that it will change to a better self. We understand that now we are learning constantly the subtle nuances of how our bodies are shifting and changing based on this new element within our body, and yes it so sucks, but we are also trying to figure out how to live life the best within the ever-changing body, so that our body doesn’t affect every aspect within our lives negatively.

 

What does it feel like to be in our bodies when it comes to change?

Below is a simple glimpse into what it may feel like to live within a body dealing with chronic illness as our bodies shift:

– There is a stronger awareness of what it means to have physical constraints, and the concept of living within a cavity that we don’t have ultimate control over.

– We want to try to get to an end point where we feel back to “normal,” where we don’t have any symptoms or at least are able to maintain a life we previously have chosen, without limitations within the chronic illness frame, while also trying to realize this is maybe our new normal.

– We are constantly trying to figure out what the best new normal is, whatever that may mean to you. Knowing even the new normal shifts and changes.

– There is a constant push of our bodies to go through a lot in order to seek freedom from the symptoms. We constantly are seeking solutions and willing to try almost anything to figure out something to be a release for symptoms.

– Constantly having the strength of trying to understand what it will look like to be “ok” and seeking a great rhythm, while knowing something could easily happen again.

– It does not affect only our body, but every aspect of our life and how we interact with this world, knowing plans could be affected and our ability to complete tasks changing based on how we feel.

 

What does “living well” even mean and how can we adapt to that when our bodies are constantly changing?

Every single one of us have a different version of “living well.” Sometimes living well is being content, seeking happiness, being able to enjoy the people around you, and indulging in simple aspects of life like bathing in the sun or drinking the best cup of coffee. While others seek a different type of living, creating a standard for themselves and those around them. They may want as specific career, certain type of family, the ability to climb a mountain, or the ability to seek the unknown without any limitations. The aspect of each individual is chronic illness doesn’t change what we may desire for living well, but ultimately our definition of living well shifts based on our perspective of living with chronic illness. It does not have to be a bad thing, and some may say the shift of what living well means is actually a good thing.

Figuring out what the future may hold and how to be able to live our best within that can be one of the greatest challenges, because you are seeking your life’s future. Understanding what it means to take care of yourself and move forward at the same time, understanding that we can’t pause our life and we are trying to figure out the best way to maintain it and love life through the unwanted storm given. It means that chronic illness will not take away your identity and who you are as a person, it won’t even take away your ability to enjoy life, but it does play a role on the limitations of how you enjoy your life.

What is your version of “living well”?

What are some ways to make the process and changes a little easier?

– Don’t ever doubt your ability.

– Give yourself the time you need and the life you deserve. You are still the same person you were pre-chronic illness, with similar interests and even more knowledgeable than before. So allow yourself to understand that even though your body changed, that doesn’t mean you deserve anything less. You deserve to be loved, you deserve to seek out the best treatment options to figure out how to make some days less worse then others, you deserve to still take interest in things you did before, even if it looks different.

– Evaluate your body constantly, so you know what is going on, what rhythms you can may expect and what to do if there is a change.

– Figure out what “living well” means to you. Write down ten things that would make you feel that you could live life well, then work on one that seems to be reachable this week and work towards bringing that into your life.

– Be patient with yourself. You may not know how you are going to feel day to day, but knowing that and taking the steps to care for your body the best you can within those moments is so important.

 

Conclusion:

We don’t want to find our best selves within our past, we want to find our best selves within our future. Meaning although you have a chronic illness, it doesn’t stop your life, and it doesn’t mean that you can’t have an incredible life. Yes, it will bring the greatest challenges ahead of you that you have every experienced and it will push your limits beyond what you thought you were capable of, but finding happiness despite the insane amount of stress around you can be possible, even though our bodies are constantly changing and figuring out what is going on with ourselves.

 

Question for you!

What does “the new normal” mean to you?

 

T r u l y ,   L i n d y

 

 

Photo Source: @LindyJacoby

How to Find the Best Caregiver

 

When our life is turned over by health issues, we grasp for someone close to help us with the unwanted and most likely unknown journey that we are about to embark on. We often turn to our spouse, parents, children, or even siblings to be our caregiver. We don’t know what our journey is about to look like and we have less understanding of what our caregiver’s path will look like alongside us, but we tend to seek of someone who we connect with the most.

It can be a great solution to turn to a family member, but it doesn’t always have to be the only solution. You may have a close friend or a neighbor that can be that constant partner within your new health journey. To ask someone to take on the responsibilities of a caregiver should never be taken lightly. Sometimes we get so focused on the whirlwind of what has happened to us that a caregiver just comes out of that storm – someone who just keeps showing up, this may or may not be the right person by your side. So how can we really find the best caregiver for your journey, to make sure that your journey is the best for you? Below are some aspects that make up a great caregiver.

Know that it is so important to find one person who can be your person through this journey. If you don’t feel comfortable or feel that you have that one person in your life, there are other alternatives to keep you standing and moving forward to the best of your abilities. Some tools or resources include; transportation, counseling or support groups, financial advisors, and much more. No matter your choice in how you pursue a healthcare partner within this process, make sure that you are able to find the right fit for you.

 

What is a caregiver?

The formal definition of a caregiver;

Caregiver – Someone who can regularly provide support, care, guidance, and assistance to someone who is in need.

Caregivers can be pulled from all different aspects of your life, but typically you have one or at most a handful of people you can rely on a hundred percent to be a part of the intimate details of the journey you are walking along with chronic illness. A caregiver is someone who is willing to provide what you need them to within this journey. Some roles that they may do include: going to appointments with you, providing transportation to places for you, being an extra set of ears, depending on your situation providing shelter and food, offering support for your decisions, and a continuous amount of work they play into each step that I couldn’t write down. Depending on how much they can give, along with what you may need from them, will create a different definition of what a caregiver is to you within your life. Depending on the journey you come upon you may need them to play different roles, during different parts.

 

What are some characteristics of a great caregiver?

When seeking out who should be your caregiver or health partner within the journey of chronic illness there are certain aspects that should be considered. Note you may not agree with all these, or have additional ones to add, so please let me know your thoughts in the comment section of this article! Below is a list of some things to think about when finding that right person for you!

Great caregiver qualities:

Someone who has the ability to recognize that it is your health journey. Meaning that their insight is greatly appreciated and considered, but ultimately they do not have control over your path and process.

Someone who is willing to take the time to do things right, rather than just getting it over. Along the journey there will be times when a wait is required, therefore having someone who is patient is important, because even if you can’t be they will be that for you

Someone who is willing to disrupt their regular routine to take care of you. Within the health care process, there will be certain moments that require your caregiver to be available to you. No matter who your caregiver is, chances are they have other aspects of their life they need to maintain and take care of, so figuring out someone who is willing to work with those other life demands will be helpful to make your process and their contribution to the process a lot smoother.

Someone who is financially able. Depending on your need of the caregiver not only could you need them for certain financial reasons, but also no matter the process will cost them on some level. They need to figure out if they can pay for the things you need, which may include; time off from work, expenses of transportation, housing, etc. You may be in a situation where you could also pay for their expenses to help you. This is potentially an ongoing discussion that you will have to have with them, about what they are willing to offer and what you can provide.

Someone who is doing it for the right reasons. I hate to say it, but not everyone has the best intentions if they are doing it to be an advocate for you make sure that you trust them completely with your life.

Someone who can be a great advocate for you. Depending on the role you decide your caregiver to play they may or may not be in the doctor visits with you. If you choose for them to be a voice within your health care it is important that they have your best interest, by listening to what the doctors say, able to understand their language and to be able to ask the right questions and make sure that they can be that partner to have a conversation with you rather than for you.

Someone you are comfortable to talk in front of about your most intimate details of life. This is the hardest part because sometimes going to the doctor you feel that you are placing all your faults or life details on the table. With a caregiver in the room, you will be sharing it in front of them, potentially more than once with some of the most unflattering details of our life. Never underestimate what you may share. To help prevent a complete discomfort with some topics within the room, maybe talk about it with your caregiver pre-visit so they don’t have to deal with the shock while they are supposed to be helping you by paying attention to the doctors. Some things, of course, don’t have to be discussed and it is purely based on you, which goes to our next point.

Someone you can set limits with. Decide if you want them to go in with you to appointments or just drive you. Have someone that you can change your mind with at any point and trust to do so. This is your experience and your path with health care and figuring out what your life looks like.

Someone who can step up to the plate. This is harder to ask than you would think because we don’t all know what this looks like. Your caregiver needs to be someone who can put their anger or upset or whatever aside when at your appointments and the short time you get with this process. No matter what happens they need to be able to come to the present fully and be a part of figuring out the best path for you.

Someone who is able to take rejection. You can always choose a caregiver and have a trial period with it. No matter what your relationship was with this person prior you should be able to change if you don’t feel that they are best suited for the position, no matter how long they have been your health care partner.

You ultimately need to find someone who is the best advocate for you, alongside you.

 

What can we do for our caregivers?

Caregivers are an amazing part of our lives, but you are one piece of their life, meaning they also need to take care of them and the world that is around them. Set up boundaries with your caregiver that not only are great for you but great for them making it a relationship that is good for both of you. Although we rely on them more than we like to admit, we each need to be taking steps to take care of our self, including our caregivers.

 

Conclusion:

We don’t need a caregiver until we are ten steps within the journey already. The person who you decide to be your caregiver is key to how your journey will go. Take your time and continue to keep the line of conversation open between you and your caregiver(s). Always make sure to ask questions and be open with them about what you need, figuring out if you two are suited for your health care journey. You deserve the best care and your caregiver is a key part of your journey!

 

My question to you!

What is the most important character trait of a caregiver to you?

 

T r u l y ,   L i n d y

 

photo source: @LindyJacoby

What Does the Journey With Chronic Illness Actually Look Like?

While walking along a forest path your senses become on high alert, seeing an ever-changing environment around you, with the warmth of the sun in glimpses. You know you aren’t the first to experience the path simply by the obvious signs of wear and tear alone, but rarely do you encounter another soul.

If you have brought a companion along with you, there are times when the footsteps of one another get farther apart seeming as if they may disappear, while other times the footsteps get closer, maybe even too close. You may see one or two souls that you have never met before, that may pass you in some way with simple acknowledgments. More often than not you find yourself on the path alone, seeking your personal journey.

The path somehow becomes the boundaries of your journey, only allowing the tips of its vast landscape to be touched by you. The trees are there, the plants are there, there are birds singing somewhere, a whole world is there, but you feel that you have to stay on the beaten path either by the idea of being guided, personal comfort, or simply knowing this could be the only way to get where you need to go.

Every once in awhile you’ll stumble upon off trails, which look like fewer people ventured on. Certain off paths aren’t worth bothering with to you, while others you may just be too curious to not seek out its potential. Each off trail brings its own personal journey with either ending randomly, having a glimpse of something beautiful at the end, or is a place of rest till you are guided back to the original path.

We have all walked it, with only a few unreadable or confusing signs pointing to suggested locations, but where do we end up truly? Sometimes those journeys lead us where we wanted to go with interesting experiences along the way, sometimes it is a simple loop to end up where we started, or sometimes we have no idea where the journey ends up.

Within our personal health care paths, we experience similar concepts that we do within the forest path; our senses are on high alert seeking the beautiful world around us till we find our destination, while simply not knowing where the path will lead us and having the restrictions of our bodies to guide us through it. It is a path that obviously has had multiple people travel it, but very few people exist completely on the journey with you. Often the journey with chronic illness can be truly empty, overwhelming, many moments of thin hope, healing, defeat, with a multitude of paths that can be taken or not. When navigating the beaten path our journeys may be frustrating at times, but there is also a beauty in how we grow as individuals within ourselves amongst this journey. Knowing somewhat to expect helps us grow to our best abilities even when times seem too hard to deal with.

 

What are the general stages of a chronic illness journey within healthcare?

Each one of us, no matter if you are directly dealing with chronic illness or have a chronic illness, has a very different path from one another within the journey of health care, but there are general similar stages we process or go through, even if we process them differently. No matter where these stages originated from, it seems to be the rhythm people tend to go through within the health care system we currently have established. The stages give us a general sense of what we all can go through within our journey with chronic illness or really anything healthcare related. They are in the order that is typically presented and guided by a health care provider, as a general guideline rather than your personal “for sure” pathway.

Stage one: Do you have any concerns with your body?

This is the stage when you personally feel that something is going on with your body that feels wrong. You find yourself asking; How do I feel? Do I know what is going on? What are my limits? Should I seek medical advice? What medical advice should I seek? It is that stage where something has affected you and seems off that it pushes you out of your personal limits enough to then seek medical advice.

Stage two: Where do I seek medical advice?

A question to consider is; where do you start seeking out your medical advice? Most of the time people will either start with their Primary Care Provider (PCP) or if it is more urgent the Urgent Care or the Emergency Room. Sometimes they are able to solve the problem, but usually, if you have a chronic illness they will bring in more specialized doctors into the conversation, typically doctors that deal with the specific part of the body that you are having concerns about. There are many different forms of health care. Depending on what you believe, insurance, or several other reasons, you have the right to seek out certain health care provider that you prefer. This stage is about seeking proper health care advice for what is going on with you, to help you get the best care possible.

Note: Legally only a licensed (and depending on the chronic illness only a specific) doctor can technically diagnose you. You may not feel comfortable with a licensed doctor and seek other forms of help. Seeking medical advice from anyone outside of a licensed doctor leads to suggestions, with potentially their own diagnosis. That diagnosis may be classified similarly to medical terms, but they are not allowed to use those exact terms or potentially treat you within those parameters. Even if your issues aren’t diagnosed doesn’t mean you don’t have problems, it just means it will be treated differently. This is great to note if disability benefits through social security will have a role within your health care. Look at the state you live within to get exact requirements, but often they require “official diagnosis.”

Stage three: How do I know for sure what is going on with me?

During this stage, doctors will have created a few potential options of what could be occurring with you and then they create a list of tests, procedures or even medications to figuring out exactly what is going on with us.

Any form of chronic illness is a large label to place on anyone’s medical chart, so this stage helps prove as much as possible that something is happening to you, not only what specifically is happening, but how it is affecting and where it is affecting. This is a stage of creating evidence of an official diagnosis.

If they are not able to rule out different hypotheses or they can’t find anything they may request more tests, procedures, or other forms of trials to continue the search of figuring out what is going on with you. Depending on what is going on with your body, this process can last a few weeks to several years. This is because chronic illness can appear differently on anyone.

Stage four: What is going on with me? 

Finding a diagnosis can be overwhelming and a relief. We know what is now going on, but now we know that something is going on and we have to try to figure out the next steps. During this stage, a diagnosis will be presented to you. Sometimes doctors will tell you over the phone or they may set up an appointment with you. It allows for you to understand what is going on with you and if there may or may not be something else going on along with it.

Stage five: What does my treatment plan look like?

Once diagnosed with any health issue, your doctor should present a treatment plan. The treatment plan could involve a wealth of treatment types including; medication, physical therapy, or even surgery. This is a stage that can help try to resolve, lessen the symptoms occurring, or help you go into remission. It is a stage that takes a lot of understanding of how your personal body will react to each potential treatment attempt. Treatment plans are an ever-changing process. This stage you may make you feel stuck or that it requires a lot more time than you would like because along with your doctors you are finding the best formula as well.

Stage six: How do I manage my health issue to the best of my abilities from here on out?

This stage of the process is an ongoing stage for the rest of your life. With chronic illness, you are seeking out what works and doesn’t as our bodies are ever-shifting. Although we may find a formula that works we will be constantly changing, growing older, experiencing new themes in life that will shift how our bodies respond. This means we have to learn how to be the best advocates for ourselves to make sure that we are equipped with knowing when things seem off and need adjusting.

 

Know that it is actually normal to not go down a straightforward path. When your path seems to go in several different directions know that it is ok and more likely expected. During certain parts of our path, the stages may seem to blend, testing new theories, pushing new limits, finding new issues and continuing to face the next steps within our life. It is about managing personal health issues as our bodies themselves constantly change and also knowing the right steps as we step away from our doctors a little bit more and more to manage this on our own more easily, along with knowing when to bring your doctors back in.

Nuanced Living is founded on being a resource for being the best advocate for yourself within your healthcare and life.

What is my personal experience on my path?

I have always done a western medicine approach for a multitude of reasons; partly because my anatomy is vastly different than most and they have already mapped my anatomy so it makes it easy when I see doctors, there is the idea of insurance, along with the type of chronic illnesses I have it allows for more options to be on the table. I have experienced different forms of treatment through other branches of medicine outside of western medicine, but for my foundation, western medicine has been the most formal component of my formula.

Why are our journeys with chronic illness so different?

No one with chronic illness asked to have a chronic illness, but yet it affects our lives in every single aspect, ultimately reshaping them. It doesn’t define us but makes us carry its weight. It is something that can come from any number of sources, an injury to even genetic or maybe both. There is a range of sources that can start your chronic illness, which instantly affects us differently, but even within our subcategories of chronic illness it truly looks different amongst each of us.

Some doctors might refer you to either as “typical” or “atypical,” which are terms to describe their own perspective of what is occurring with you. This basically determines the start of your journey. To doctors, they will perceive the way you carry your illness as something that they believe can be treated within a certain system that seems to work for “most” people or if they will start a different series from the beginning that is not typical. In the end, no matter if you are “typical” or “atypical,” you will have to have a unique treatment plan tied to you. The terms simply just help them know where to start your treatment options.

Our bodies are so different from one another. We are coming to the table all differently based on; how we treat our bodies (do we exercise, do we smoke, etc), what we have experienced within our life (have you had a traumatic experience, do you work outside or inside, etc), in general our makeup as humans (is our anatomy the “typical” human form), and how we wear our bodies after the fact of symptoms (do we push ourselves physically, do you continue certain habits, etc). We are all very different especially when you add all those factors together that make us as a human being. Unfortunately, since our bodies are each a unique equation the way of chronic illness looks on us will be very different. We may or may not carry similarities within our chronic illness categories, but fundamentally we are all so different. Our bodies all need to have a different formula to make the new normal ok.

Chronic illness is a powerful term that shapes this blog, but yet it doesn’t come in one form or look the same to anyone. Every single person that encounters chronic illness has their own map of how chronic illness affects their lives and senses. Some even have multiple chronic illnesses that somehow create a perfect storm in their bodies, which still pushes them throughout the day to find the new normal.

Nuanced Living is about exploring all aspects of life since chronic illness has such an effect on it.

 

Why is the journey with chronic illness so lonely?

Typically when we each of us start on this path, we often don’t know the outcome or what is even wrong with us. We aren’t really sure which other individuals have the same things to set ourselves amongst them. Once we are diagnosed we look for others with the same chronic illness. We seek these people and often crave them because we want to know that there is success within the journey that we are now stepping onto. We soon realize once we are within those categorized everyone is on a different part of the path and everyone has had very different journeys along the path.

So many people have gone through this path before, but it can be so lonely. As a result of our bodies being so uniquely different, it requires us to understand that we are on a path to get the best healthcare for our body and we need to make the best choices for our path, despite others. It is important to understand this is our process rather than get caught up in someone else’s process and not entirely be able to fix us. Simply put, what may work for one person will not always work for you.

Surrounding ourselves with support is so important, and so is knowing that this body is our own and we ultimately need to make the best choices for ourselves along this path, even if at times it does feel lonely.

 

Conclusion: What does the path with chronic illness look like?

To understand the basis of our journey comes in the form of general stages but also knowing that we all go through this journey very differently. Even though there are so many differences within each of our journeys we are still able to create a foundation for ourselves and constantly grow within our new normal so our path continues to be the best within its own elements, no matter how hard it may get.

 

My question for you!

What stage(s) do you feel that you are currently in?

 

T r u l y , L i n d y

 

 

photo source: @LindyJacoby

What Is Chronic Illness?

 

Each word that we come across we seek its meaning through personal experiences, through reading, through everyday conversations, even through all our senses. Some words are easy to roll off our tongue and we crave them to be a part of our lives (i.e. happy), but others we come across can carry a unique weight that we really don’t want in our lives (i.e. disappointment). When words have a negative gravity to them, we tend to continue to seek the understanding of what it means not only as a word, within life to ourselves and to others. As a result, we often find ourselves trying to resolve the word, because of its meaning, or we push it as far away as we can. Some of us can leave certain words behind and get a general gist of what they may or may not mean, while some of us are involuntarily affected, knowing the meaning of the word in a greater depth than is desired.

Chronic illness is a term, two words that holds negative weight to many people within this world. It seems to be a word that is sought out to learn in depth what it means, or it is considered unimportant and unnecessary to others knowing only its existence. Yet no matter how you view it, almost everyone you ask will tell you a different definition of what it means to them. Why is this? It is a word that can take a hold of someone’s life in such a unique way. It is an umbrella term. It not only explains what someone is going through in a general sense within their body, but it also shares the burden of the nuances chronic illness has on their everyday life. It is a term that describes what is happening to them overall, a term that links to the definition of their personal body health, a reminder of what is going on not only within me but along side them within their life.

Two simple words of the human language that holds a vast spectrum of burden, health, hope, lack of hope, the thought of dreams lost, life altering circumstances, trust in unknowns, and so much more. It tends to be a negative piece of our lives that change our lives forever. But our lives don’t shut down. Not for a second. We press forward, we try to go through all the motions and we seek to have the best life despite what we were given within this world, under that term. This blog was created to look at all the nuances of the weight that now our lives hold, the realities, and the new formulas to make sure that we can create our best lives within the unwanted, but given circumstances. It is a term we have and can personalize within our own lives, based on our experiences, our conversations, our senses.

Nuanced Living will bring a spectrum of topics that can help you and learn with you to be the best advocate for yourself within chronic illness life. It is so important to me have Nuanced Living be a constant resource, so please feel free to contact me if you have anything you want to share or have questions about!

So what is chronic illness really? What does chronic illness mean? Why is the meaning so different to each of us?

 

What is the formal “definition” of chronic illness?

Chronic– continuing or occurring again and again for a long time

Illness* – an unhealthy condition of body or mind 

Chronic Illness – an unhealthy condition of body or mind that continues or occurs again and again for a long time

 

What are some types of chronic illness?

To all those who are dealing with chronic illness or walking alongside it let me take this moment to tell you I may not directly point out your specific chronic illness.

What does chronic illness look like?

Technically chronic illness is a “disease” or “sickness,” that is constant. This means it is limited to a specific type of sickness or disease, along with the fact that you can have multiple illnesses at once. Chronic illnesses comes in all kinds forms that are very different from one another, that can literally affect every single part of your body. It is a general category of illness that can’t be treated one hundred percent by any source of medical treatment. It can be lessened, or even be in remission but it will never fully leave our bodies. It can affect a piece of our body or the entire whole.

Chronic illness is diagnosed by a doctor, which they will be able to tell you if it is something that is chronic or not, along with all treatment options. They should absolutely be upfront about every aspect of the process and what it means that they or another doctor can provide within your life.

What are some specific examples of chronic illness?

Honestly there are too many to write down in one post.

Chronic illness is a general term to cover a category of individuals suffering from a number of different types of illness, but it is a very broad term, like talked about early.

Next there are general terms that break down the categories in a second level. These terms give a more general idea of what is going on with you, but don’t describe it specifically. A few examples include; autoimmune disorders, autonomic disorders, cancer, chronic pain, etc. These terms are typically given when doctors are trying to figure out exactly what is going on, but know what part of the body it is affecting, but not specific. It is also an easier way to describe what is going on with you to others, because often time people are familiar with the specific medical name for what is going on.

Lastly there is the more detailed medical name for specifically what you have. This is the term the doctor will give you. Note sometimes even within these categories there are even more breakdowns, but not always. A few examples include; breast cancer, cervical cancer, chronic obstructive pulmonary disease (COPD), complex regional pain syndrome (CRPS), lupus, migraines, postural orthostatic tachycardia syndrome (POTS), ehlers-danlos syndrome (EDS), etc.

Note: The list above is not limited to any source or regulations of what individual states consider chronic illness for disability benefits.

What is my personal experience with chronic illness?

You probably are wondering by now, why is Lindy writing about this topic and how does she really know what it means? Chronic illness is a tough topic and oh I hope I do it justice! It is something I live with and have for a while. Although it doesn’t define me it affects my life daily. I have multiple chronic illness. Some of my personal chronic illnesses (not in order of how I suffer from them) include; postural orthostatic tachycardia syndrome (POTS), several different heart issues, migraines, chronic venous insufficiency, chronic pain, endometriosis, autonomic issues, chronic obstructive pulmonary disease (COPD), and several more. A few of these I have had most of my life, while others I only have had within my adult life. I feel that throughout my experience there are some things we can all relate to, even though the way we relate to them may be very different then one another. Nuanced Living was formed in hopes of creating a great resource to be the best advocate for ourselves under our circumstances. I am learning to find my ever shifting new normal and I would love to hear how you do it! Please feel free to contact me or comment below because I would love to learn from you!

 

 

What does chronic really mean to you?

Who is affected by chronic illness?

Everyone can be affected by chronic illness. It can affect anyone, anywhere for a multitude of reasons. Also if you have some form of chronic illness it doesn’t mean that you couldn’t get another form within your life. I promise this is not to scare you, it just means that we are equal and fundamentally the same and it can affect anyone.

It is something that can come from any number of sources such as; an injury, genetics, exposure to something, because your body is formed differently, and so many more reasons.

If you at all are having any health issues, I highly recommend seeking a medical perspective.

How can chronic illness affect us?

Chronic means that it is a forever thing. Since there is such a range of chronic illnesses, there is a range of how this can affect any one of us on a regular basis. Sometimes it happens in segments, days on of having issues or days off from having issues, sometimes it is a constant thing with the possibility of going into remission, sometimes it is constant with worse symptoms during certain times, or sometimes it is completely random on how it shows itself. With these different affects we create our own new patterns within our life based on what is happening with our body.

No matter how it may show itself it is a aspect of health that you carry. When diagnosed we are put within different categories (like discussed above), these groups allow you to see how other individuals who have similar diagnosis live their lives, what treatments have worked or not worked, and a hypothesis of what your journey may look like. These groups can be very beneficial at times when understanding what is going on, along with surrounding yourself with similar people and the right doctors, but it is good to know that each individual is still going to have a very different journey along the process. Nuanced Living is here to help you find whatever your journey may be, and making it go as easily as possible.

What is the process if you or a loved one is diagnosed with chronic illness?

Within the idea that we feel something is wrong with our body, seeking a doctor to get information and a diagnosis will be the first step. You may or may not be diagnosed with a chronic illness. It may even take a while at times to figure out the right diagnosis for you. Once a doctor has diagnosed you with a specific diagnosis they will create a treatment plan, sometimes seeing if you might go in remission or not, along with seeing if the treatment plan they created will work or not, adjusting if needed. During this process you will personally start the path of trying to take care of your life and your body as much as possible. This process will be an ongoing conversation here on Nuanced Living.

Why is it so important for everyone to know about chronic illness?

No one with chronic illness asked to have chronic illness rather it is something we constantly ask to have taken away. But yet it affects our lives in every single aspect and reshapes it, but it doesn’t define us. It makes us carry its weight and displays private aspects of our body despite the unwilling part of our soul. It can be connected to anyone at any point within their lives. There is no stereotype or box to define what happens when we have chronic illness, other than we know that our lives have forever changed.

It is so important for everyone to know about it for several reasons. The patient needs to be aware of what is happening to their body and how can they take care of themselves as much as possible within the new circumstances to be able to live their best life despite chronic illness. The caregiver needs to understand, as much as they can within their limits about, what is happening to the person that experiences chronic illness and how to be the best health partner. The viewer of ones life, the passersby, friend or family member needs to understand that this person within their life has had a drastic change within their life and what does that mean for not only the patient, but also themselves. The person who has no experience with chronic illness, the out of body experience person, one who never realizes they see it, needs to understand on some level the significance of how chronic illness shapes the world around them without them even knowing it.

We need to understand our environment, our culture, the people that live within this world that hold a depth of this term “chronic illness” that no one really understands and the patients themselves are trying to understand. No one will ever grasp, even a fellow chronic illness patient, the body you are now living in and every piece of what that means, along with how it truly is to be a serving steward of yourself despite what is happening. It is important for all of us to know as much as we can to have an awareness and ability to see the nuances of life within chronic illness.

 

 

Conclusion… So what is chronic illness?

Thank goodness we are all different, I wouldn’t like to think that one person is the same as another, we are all supposed to be uniquely beautiful! Unfortunately when it comes to chronic illness, those differences may seem overwhelming and nerve racking when trying to figure out what now happens within our lives. Nuanced Living is here to make those overwhelming differences be more manageable and making the shifting changes beautiful. So in the end what is chronic illness? Something that has affected your body, your health, your life, but something that will never fully go away.

In a very simple description of chronic illness; it is a health issue that affects your body and your entire life.

 

A question for you!

How would you best describe the term chronic illness? Are you living with it or amongst it?

 

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Know you are not alone and I look forward to getting to know you and learning with you!

 

T r u l y ,   L i n d y

 

 

* Sources: definition of chronic and of illness: Webster dictionary

image source: @NuancedLiving