It’s Ok Not to Be Ok: Navigating a Chronic Illness
By Lily Kerr, MSW, LMSW
Let’s face it—any type of change can be difficult. We tend to lose a sense of control when entering unknown or new territory, not being able to predict how an unexpected event may affect our physical and emotional state. A challenge we face from the moment of birth is the ebb and flow of our physical well-being, being uncertain of how long we will be able to maintain homeostasis.
As human beings, health is not guaranteed and can be altered at any given moment. Illness does not discriminate, regardless of age, gender, race, etc. One day you are living your life, going through your daily routine, feeling unstoppable and the next you are handed a life-changing diagnosis. All emotions succumb at this given moment, anger, fear, confusion, sadness, and utter shock. Questions and thoughts circulate “Why me? Why did this happen to me?”. You may try to place the blame for this distressing news on yourself or maybe even someone else, all while trying to keep it together for your loved ones. If you are not strong how are they going to be strong for you right? The emotional toll of deciding how to walk through this unforeseeable chapter of your life can be debilitating and not knowing how to act/maneuver in sickness may lead to a period of isolation/loneliness.
The goal of this article is to provide tools on how to cope during and following a chronic Illness diagnosis and to find self-compassion for the emotional journey which takes place during this process. It is in fact Okay not to be Okay.
This article will discuss:
Effective Communication: Tools to communicate effectively with loved ones.
Boundaries: How to set boundaries for yourself during or following a chronic diagnosis.
Recognizing Emotions: Being in touch with your physical and emotional well-being.
These subject categories will allow you to implement a plan of action during and following a diagnosis. Every day has peaks and valleys when you are fighting for your health. Being able to take control and accept ever-changing emotions throughout healing will allow you to keep moving forward, one step at a time.
Effective Communication
Knowing when or how to discuss a life-changing health diagnosis with family or friends can be a challenge, especially when you don’t have a chance to process how you are feeling after being told you have a chronic Illness. As a result, it can be important to give yourself some time (several days, several weeks, etc.) to fully process the information you were provided by your physician. You may have one person you feel most comfortable discussing your news with initially. This is more than okay.
Preparing yourself for the type of reactions you may receive when informing loved ones about a diagnosis may also aid in the process of delivering news about a change in health. For example, going through the different emotions or responses that may present from the individuals who hear about your illness for the first time (anger, sadness, confusion, shock). Developing an idea of how your close circle may react to the discussion could assist with your readiness to initiate a conversation and give you a sense of comfort for how others may feel after hearing about your health.
Choosing a location to initiate the discussion surrounding a change in health may provide a sense of comfort when delivering the news to family or friends (dining room, living room, patio, porch, loved one’s home, your home, etc.). Privacy could be a factor to consider during the time a conversation about a diagnosis takes place, allowing both you and a loved one to share your authentic emotions and thoughts about the information being shared. Additionally, practicing how you are going to begin the conversation before a meeting time with a loved one might enhance confidence in preparing to initiate a conversation about your physical well-being.
You may ask yourself, “How do I know if I am ready to have a conversation about my health?”. The answer is, that you may not be able to tell when you are truly ready as taking this step can be daunting due to uncertainty of the discussion outcome. However, there is no right or wrong way to share this part of your life. The only expert in this initial conversation is you and only you. Therefore, it will be the right time when you decide it is the right time for you to communicate.
Boundaries
Setting boundaries during and following a chronic diagnosis can be essential for positively managing your mental health. Being able to recognize what does and does not align in navigating a chronic illness is the first step for deciding what you need to leave or remove from your life.
Family/Friends: Sometimes spending time with friends or family members may be overwhelming or cause negative emotions to arise due to the way they may act around you (making your diagnosis about them, focusing on your diagnosis rather than you as an individual, only discussing the hardships you may be facing, etc.). If this occurs, you do have the ability to confront each individual about how you may be feeling when you are around them. This may consist of letting someone know you need to take time for yourself due to your health, meaning allowing visitors does not align with your current needs at this time. You may let family or friends know it would be helpful for you to reach out to them for assistance while you are still trying to maneuver through a chronic illness. On the other hand, you could have people in your life you feel supported by and would like to be near to support your physical/emotional well-being. Contacting people who make you feel like yourself, elevate your mood, and help you to persevere through a change in health can be a strategy to maintain your mental health positively.
Technology: Conducting daily searches on Google regarding your diagnosis or symptoms might seem helpful due to the ease of obtaining information in an instant. Nevertheless, this process may lead you to view information that is not directed to your health, potentially leading to increased anxiety, fear, or gathering a false narrative for the management of your health. Acquiring credible and educational resources from your medical team or healthcare clinic may assist in reducing the likelihood of viewing unreliable advice from the internet.
Examples of Credible Sources:
Centers for Medicare and Medicaid https://www.cms.gov/priorities/health-equity/c2c/manage-your-chronic-condition
Multiple Chronic Conditions Resource Center https://multiplechronicconditions.org/patient-resources/
Center For Disease and Development
https://www.cdc.gov/chronic-disease/living-with/index.html
Even though technology use can be an impossible process at times, smartphones, laptops, and tablets can be useful when managing your health, especially for organizing. These devices allow you to harbor websites that provide reliability in one single location. The various forms of technology additionally have the ability to store notes, appointment dates via calendar, and provide notification for when to take medications/ perform proper protocol for symptom management. Advocating for yourself when using technology can reduce stress surrounding how to receive education about your healthcare and assist with controlling symptom management.
Physical Activity: A few months before your diagnosis you may have been able to run or walk 3 miles yet now you can barely get out of bed to walk the dog or go to work. A fast change in activity ability can be frustrating and could potentially lead to feelings of guilt or even hopelessness. Making adjustments to your physical capacity one day at a time can be a helpful action plan to establish boundaries, improving your mental health. Physical and emotional health go hand in hand with what you can give, personally and professionally. For instance, your day went well due to positive accolades at work and a reduction of symptom flare-ups, yet when you get home you are not able to complete your goal of going for a walk. Your mind may want to get up and go, but your body is failing you, hearing the internal voice “You need to rest”. Being able to accept this voice and tell yourself you have done all you can do for the day sure is a challenge. However, learning how to embrace this feeling of defeat and give yourself grace is a work in progress, just as learning how to handle a chronic illness. Taking note of your daily accomplishments through activity via a journal, whether it was being able to make dinner, play with your children, or even walking up a set of stairs is a way to recognize you can do hard things, yet that hard task may look different each day.
Recognizing Emotions
Becoming aware of how you feel and why you feel a certain way about your health can be difficult during and following a change in physical well-being. The reason emotional recognition tends to be challenging once a change in health occurs is due to the different types of emotions you may encounter all at once. These feelings may include sadness, anger, confusion, guilt, shame, anxiousness, fear, etc. Some individuals may enter what is known as the stages of grief. Yes, grief. Grief can be defined as a “significant loss”, in this case, the loss of a sense of “normalcy” or life before a diagnosis. The five stages of grief include denial (avoidance of accepting a situation or feeling), anger (frustration), bargaining (trying to make sense of an outcome also known as the game of “what ifs”), depression (uncontrollable sadness or loss), and acceptance (letting go of control and making peace with a situation or outcome). It is often thought these stages have an order yet this is not usually the case. You can enter a stage more than once and the stages can even overlap at times. Locating a structure for determining feelings during an emotional rollercoaster (stages of grief) can help to be a roadmap when overcoming strong feelings. Working to recognize emotions as they come and go could allow you to find acceptance in your diagnosis rather than letting your health define who you are as an individual.
Recap
This article serves as a guide with tools on how to walk through a Chronic Illness while allowing self-compassion. Taking control by utilizing effective communication, setting boundaries, and recognizing emotions are three sizable steps to take to find peace during a change of health. Allowing yourself to register your emotional capacity day to day while applying mechanisms for understanding how to address physical change will set you on a path toward healing and contentment.
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