Understanding Chronic Illness Through Interpretation


When we haven’t experienced something, we can only understand it by an interpretation of one who has experienced it. Even then we are all so different, have such different lives, different experiences, and the way we interpret is different. In this, it manipulates how we even understand another’s interpretations. Each individual will face chronic illness very differently, even if they faced the exact same type of chronic illness. We will never fully grasp what happens to another. As a caregiver, the task of understanding someone’s interpretation of chronic illness is crucial to the care that you provide them.


Depending on the interpreter of chronic illness, they will offer their version in great details or potentially offer very little to help with an understanding of what they are experiencing. While some interpreters may feel comfortable sharing, there are others that are going to keep their version more private. Some may decide what is going on or what it really means to have chronic illness is their personal experience, showing little to you and that is ok. Even if you are the caregiver, a specific form of interpretation is not a required. Each person gets their own right to what they share or not share. As a caregiver, it is important to understand no matter what pieces you are given, make sure to work with the pieces they decide to share.


They let you be apart of their health journey that consumes them, yet this is a journey that leaves an unknown to how long it will last. Chronic illness goes through ups and downs and changes over time, but it is something on some level this individual will deal with for their entirety. Through interpretation of what is happening with them, the nuances of a journey with chronic illness will become more apparent to you.


A few ways to better understand someone’s interpretation of chronic illness:


Listen with all your senses.

No matter how much they tell you about their interpretation and experience with chronic illness, listen to their entire story with all your senses. They may show you in body language, the inability to complete things, by certain words they say, they may not be able to be touched, and so much more. They wear chronic illness with the entirety of their body, so look for the signs and all the settle nuances of how they show chronic illness.


Understand that it is their story.

This is their experience, their understanding, and ultimately their whole life. So figure out how to not take away or add to their version. Find a rhythm between you two to make it comfortable for them to share in their own personal way. If they choose to share or not to share their story, know that you are not within their body so they can be the only one to truly state what is going on with them.


Figure out your role with them.

You may have taken on the role as caregiver, but what was your relationship role with them before? Whether you are a friend, a parent, a spouse, or any other role, taking on the caregiver role can sometimes distract from our initial role within their life. Your role as caregiver has probably come more to the forefront but always remembers that you are someone else to them as well. You play a huge role in their life on many levels. There will be times when it will be embarrassingly obvious to them that you are their caregiver in one way or another, but taking care of the intended relationship you have with them is very important!


Be patient with yourself.

It can be extremely hard to see and accept what is actually happening to our people, especially since we don’t know exactly what is going on. Be patient with yourself and the process. It is a learning curve, but find what motivates you to keep learning from this process.


Here are some articles to understand the nuances of chronic illness a little more and the role of a caregiver;

What is chronic illness?

 How to find the best caregiver!

 How to be the best caregiver for your life and the patient!


T r u l y ,   L i n d y


Image Source: @NuancedLiving

How to be the best caregiver for your life and the patient!

If you are a caregiver you carry a new unique weight within your life. You have the emotion of someone you care for hurting, you want to do everything you can to help heal them, you carry part of a key component that drives another’s life, and on top of that you have to maintain your personal life within the new responsibility. A patient’s life with chronic illness is a weakened life within a world that is built for “healthy” people, and as a patient, we need help on many different levels. As a caregiver, you learn to adjust and figure out how to be the best caregiver to the person you have chosen to help, along with still maintaining your personal health and life to the best of your abilities. Overall time allotted to the patient can look very different for each caregiver; either you take on the role as a full-time caregiver by having the patient live with you, you may be that who makes sure the patient gets to their appointments, or you are somewhere in between those two extremes. No matter how much your role exist in another’s life, it is important to understand what your role can be and how you can be the best partner within someone else’s healthcare journey.

Know that your time, love and sacrifices never go amiss. We as patients may not always express our gratitude, but our perspective of life has shifted and sometimes it can be difficult to be outside of the symptoms that now are apart of our lives. We try to be the best advocate of how we feel and what is happening within ourselves, so even when we may not seem like it trust us that you are important beyond knowing. Even though you are in a position where you see our best selves and our worst selves, it doesn’t mean that we love you less or hate you, it means that this is a really hard journey for us, as patients, be forced to push our bodies in new ways.

Part of the role as a caregiver is to make sure you can be the best match as a caregiver for the patient. Check out “How to Find the Best Caregiver” article, to see what some expectations may be of this type of relationship. Your ultimate role is to be the best partner within the health care journey of someone else.


Note: “How to Find the Best Caregiver” article describes what a caregiver is.

Life changes to expect as a caregiver:

Caregivers tend to be, but not limited to, the ones closest to the patient and they may not know that they have taken the role of a caregiver, until ten steps within the process. No matter where in the process you are there is the opportunity to recognize if you can be a proper caregiver to the person needing it, or not. Below is a list of changes that one could expect the sudden effects of chronic illness.

Caregivers Life Changes:

– Vacation time may now be spent on going to appointments or helping the patient out.

– Flexibility is key. Depending on what is going on with the patient, they may need you at different times for different things.

– The patient may need to live with their caregiver or have the caregiver live with them, for either a brief or extended amount of time, depending on the status of their health and financials.

– Unfortunately, finances become an issue with someone with chronic illness, where they will have to rely on their caregiver or someone close to them a lot. They may need help with food, bills, rent, etc. To best understand what is going on and how to be the best help within the caregivers’ personal limits come up with a plan with what they need, what you are willing to offer and create a plan. If they have to become financially dependent on the caregiver then remember that this is extremely embarrassing, difficult, and something they can’t control.

Patients Life Changes:

– Relationship roles and types will change or shift.

– The patient may not be able to work anymore.

– A drastic change is going on within the patient’s bodies that they can’t control and are trying to best understand their new personal physical limits.

– Feeling that their life is changing in a huge way and the idea of having less and less control is more prevalent than ever.

– The patient bodies are now viewed very different with themselves, along with everyone else.

– Also, check out “What does the journey with chronic illness really look like?” article for a little bit more of a perspective on how their life might be changing.


What are the roles as a caregiver?

As a caregiver, there are certain roles that are potentially part of what will be needed. Check in with your person to understand what they may need from you and what may be a potential. Having a routine of checking in with them will help the communication and allow for a better partnership so you both know what is the need and what you can personally offer.

Scheduler: Appointment are key to figuring out what is going on and how to take care of the patient. If you are not the scheduler make sure that the patient knows when you are able to go to the appointments if they need you to.

Transportation: Depending on the chronic illness, the patient may not be able to drive, or only drive during certain situations. Some situations where they may need you include; driving after procedures, surgeries, or even just rough appointments. Figure out if you, as a caregiver, are taking their car or yours, along with what is the most comfortable for them.

Motivator: As a patient, there are certain times when we just need a little boast to say we can do it. We want to know its ok if we can go through an appointment, we can try a new treatment, we can cry if we want to. Set boundaries on when you are able to be that motivator, that encourager. If you can’t be that then let them know and help them find someone else who is better suited for it.

Chef: Depending on the chronic illness, you as a caregiver may have to take over meal prep or some meal prep. Talk to the patient to find out their dietary restrictions, if they require their meals to be taken at certain times, or more frequently. Make sure that you know what is needed if you play this role because food can be crucial for their health.

Private Helper: Sometimes an extra set of hands in the most intimate areas is important but hard. Someone who will be in a way a home “nurse” taking care of things that can be so embarrassing and so much more detailed then the patient likes to admit. Our bodies are trained to be private and give away when we desire, but give away in a more beautifully detailed way. Chronic illness can force us to expose our body that is not natural and in ways that we had hoped no one ever sees us.

Second Hand: The patient may need a second hand with different pieces that either they can’t do physically or mentally on their own. This is different than above because it may not be as intimate, but it still changes our personal limits. This may include help with treatments, help with physical therapy, etc.

Researcher: It is great to understand what is going on with the patient. It is important to understand potential symptoms, treatments, conversations, etc. If you find something that is interesting have the conversation with the patient about it, but ultimately let them have the choice about what they do with their body.

Secret Keeper: This is not your journey. It is not your journey to tell everyone. You are apart of someone else’s journey and it affects your life, but the details of someone’s life are their own. Talk to the patient to see what they are willing to have exposed because you don’t want to lose their trust.

Traveler: Depending on what is required and what is available, traveling may be required to get the treatment that is needed.


What are questions that you should ask?

No matter what stage you are in within the patients’ health care, you can always ask questions.

Questions to ask the patient as a caregiver:

Check out the article “How to Find the Best Caregiver” for questions that the patient should feel like they can talk to you about. Be open and honest with the patient and ask anything you feel that you need to, but know that it is ok for them not to tell you.

– What do you need from me?

– What do I need to know about your medical history?

– How can we create the best roles for each other moving forward?

– How often should we check in with each other to make sure our routine is working?

– This is what I can provide for you, is that ok?

Questions to ask a health care provider:

Let the patient be the director, as much as possible, when having a conversation with their healthcare providers. Ask the patient prior to appointments if it is ok to interject if you have questions. It is great to be a second set of ears, but time with a health care provider is so limited and it is important to make sure that the patient gets all the questions they need to be answered, because it is about them and their life. A way to make sure that both of your questions get to acknowledge and you both feel good with an end goal; set an hour aside before your appointment to go over all the questions you and the patient have and write them down on a piece of paper to come up with a plan.

Below are general questions. Specific questions will be tailored to the patient condition and examples are not listed.

General questions:

– What is going on?

– What are the timelines?

– What are test and procedures that you recommend?

– What do you feel would be the best option of treatment?

– What are potential side effects of ____ treatment?

When your patient seems to feel overwhelmed this is when you would ask the questions for them, by reading the situation and seeing where they are. Another great reason to set time aside to go over everything.

Also, note health care providers will know who has control over the conversation and the health of a patient. They will always ask the patient what they want for their own safety and comfort. Make sure that you don’t control the conversation and allow it to be the patients’ conversation.

What if you don’t feel comfortable medical terms?

If neither you nor the patients have any history within the medical field, it can be difficult and overwhelming to sometimes understand what health care providers are saying. Health care providers should be more than happy to offer explanations for any terms that you may not understand. There are so many words that can be thrown out concerning anatomy, medication, treatment, procedures, types of illness, etc. Sometimes these are theories and will have nothing to do in the end with the patient and other times they have a lot to do with what the patient needs. One option for a patient is knowing that the time is limited with health care providers, meaning each term the patient may not understand you could either have the health care provider explain it or ask them to write it down so the patient can fully consider all their options. There is always the option of contacting the office if you still aren’t fully sure what they meant, once you have left. You never have to make a full decision while in the office in front of a health care provider, make sure you know what is happening with the patient’s body is important to making the right decisions for them.

You do not under any circumstances have had to have medical field experience in order to be a caregiver.



Remember that even though you are taking the time to care for someone else and play that role within someone else’s life, it is so important to take the time to take care of you and your life as well! Keep the communication open as much as possible!


What have you found to be the most important role as a caregiver, within your journey with chronic illness?


T r u l y ,   L i n d y

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.



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