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

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