What to Do After Diagnosed with a Chronic Illness

Six out of ten people are living with at least one chronic health condition within the United States. But what do you do now that you’ve just received the news about your own chronic illness? Here are six things to do after diagnosed with a chronic illness.

#1. Follow Your Chronic Illness Treatment Plan 

Your medical provider will review a short-term and long-term plan to follow after you are diagnosed with a chronic illness.  Treatment plans are the foundation for living a fulfilling life with a chronic illness because it helps you manage symptoms. It will consist of instructions ranging from immediate surgery to prescribed medications, treatment referrals to other providers, and lifestyle adjustments. 

Discussing the treatment plan with your medical provider can be initially overwhelming if several changes must occur within a short timeline. Your feelings of overwhelm and fear are normal and valid. Find healthy ways to keep your mood steady as you get accustomed to your new norm with a chronic health condition.

What if I disagree with my doctor’s health recommendations?

Not all recommendations align with your needs for various reasons, and that’s okay. Talk through all treatment options to help you make the decision that works best for you. You may also be able to review the information outside of your appointment to support you in making a more informed decision.

Be mindful that this part of the process is not always the easiest in matters of an emergency. In that case the flexible timeline to make certain health decisions are not always immediately available. But speak up and ask as many questions as you can think of regardless of the timeline. Then document any other questions when they come up later. 

Once you’ve discussed the chronic illness treatment recommendations with your medical provider, consider whether or not you have all the information that you need. You can also request a second opinion from another provider to help you feel more confident in your decision. 

My Own Experience with Collaborative Treatment Planning

When I was first diagnosed with Relapsing Remitting Multiple Sclerosis in 2019, I already had a lot on my plate. I was a new mom (11 months postpartum) working a new job and struggling to keep my head above water. My initial thoughts after being diagnosed was, “How could this be happening to me?” and “How do I make the best decision for me and my family?”

I felt so much pressure to make the right decision, and I was terrified about how my life would turn out after receiving this news. 

I expressed those immediate reactions to my doctor, who was very understanding and compassionate (whew!). She reassured me that I had time to figure it out and that the immediate treatment recommendation would help stop the progression. But with that compassion and gentle response, she was also honest with me.

She gave me some hard truths about how far I had progressed, noticing how other medical providers had likely missed the signs for at least six years. So, I had to treat my RRMS as if I had it for the last six to ten years. Although my illness was new to me, my body had been battling this for years untreated, putting me at increased risk of losing my ability to function if not attended to immediately. 

That information changed my life and gave me the perspective I needed to weigh my options (and we like those). 

Weighing All Treatment Options for Your Chronic Illness

I was grateful that my doctor reviewed several long-term treatment options for me to manage and treat my condition. Admittedly, the short-term treatment was the hardest for me to make, because it required me to take time off of work and ask for help. And let’s be honest, at that point in my life I thought I could handle it all (and was I wrong). 

But what mattered the most for me in that moment was that she reassured me that the choice was mine to make. I felt like we were a team reviewing the options, which helped me feel more supported after getting this big news. And that’s how it should be.

I was faced with making several immediate lifestyle adjustments to manage my chronic illness. The adjustments were uncomfortable yet necessary, but we made it happen. 

My husband and I were able to take a few weeks to research and discuss long-term treatment options, making a list of questions to bring to my follow-up appointment. Although I had some medical appointment anxiety and felt nervous about making the next big health decision, I felt more confident having the time to think it through.

#2. Consider Your Current Needs After Diagnosed

Once your treatment plans are confirmed, consider what you need right now to carry it out. Do you need time off of work? Would it help for someone else to take some priorities off your hands until things get settled? How can your day-to-day needs be supported?

As a Chronic Illness Therapist and warrior, I often notice that this is a difficult mindset shift to make because you may not know all of what you need at the moment. Your body is making many changes that are hard to keep up with and your symptoms may look different from one part of your day to the next. 

This is why being present is so important after being diagnosed with your chronic condition; awareness of your body’s patterns help you make a plan. What do you need to make the next few weeks more bearable for you? Make a list of your symptoms and immediate things that need to be done (by you or others in your support circle) to manage it. 

If there are things you can do on your own, go for it. After all, maintaining a sense of normalcy could be helpful. But be mindful that some parts of your norm need to change for the sake of your mental and physical health. Prioritize doing things that help lead to the most “good days” with your chronic health condition. 

#3. Communicate Your Health Needs with Others

Talking with others about your chronic illness can be a really vulnerable yet necessary thing to do. After all, your health condition is a life-changing and personal matter. So finding the best way to handle that information is key.

Here are some common questions that may come up when considering talking with others about your chronic condition:

1. How do I know if this is the right person to tell? 
2. How will they respond when I tell them? 
3. Will I have to take care of their feelings once they know? 
4. Will they even believe me?

There’s so much worry that can come when considering talking about your health condition, and those concerns come from a real place. This is a normal experience when making such an important decision about your chronic condition, but you can’t always predict what some of the outcomes will be. 

In the moment, consider what is in your control – what you share and who you share it with. 

Benefits of Talking About Your Chronic Health Condition

Talking about your chronic illness after being diagnosed can help you feel more supported, less stressed and lonely. In fact, many people who feel supported talking about their health experience better physical and mental health outcomes. 

On the other hand, those who don’t feel supported having conversations about their health are more likely to feel lonely, leading to more health decline over time. And no one wants that. You deserve to thrive and live a meaningful life even with a chronic health diagnosis.

First I’m encouraging you to consider who is the best to communicate your health news with. Beware of people that show signs that make you feel unsupported with your chronic illness. These are the people that will make your life unnecessarily harder. You need the absolute opposite right now.

Communicating these needs with the right people allows them to support you with your chronic illness. They will do whatever is necessary to make your news easier to carry without you feeling the pressure to handle everything and have it all figured out. 

#4. Allow Yourself to Feel Your Emotions After Diagnosed

Allow yourself to feel the emotions that come with a chronic health diagnosis. I know this sounds uncomfortable for most people, but it’s important.

Hear me out. 

One of the seven stages of chronic illness grief is shock/denial. During this stage many people express feeling numb or shocked as they come to terms with the news. Thoughts and questions about life with your chronic condition come up at this point. Unfortunately you may not get the option to let it all sink in before needing to to take action and follow your health plan.

However, you have to face the many feelings lingering beneath the surface (i.e., sadness, fear, anger, confusion, panic, despair) so that you can move forward with clarity. All of these feelings are normal to experience after receiving your diagnosis. 

Your life has changed with this news, and you may notice times where you miss parts of yourself and your life that changed as a result of your health condition. Whether you’re thinking back to the past, observing the present or wondering ahead about your future, all of the emotions you have need room to breathe. 

Pushing these feelings down gives them more room to wreak havoc on your body. In fact, blocked emotions over time can lead to several physical illnesses, including heart disease, GI problems and autoimmune disorders. The emotions that come up when you’re experiencing discomforts and changes in your body is not “all in your head.” However, your chronic illness can significantly impact your mental health if you don’t successfully learn to coexist with your feelings.

How Can I Feel my Emotions Without Making Myself Feel Worse? 

First, give yourself permission to slow down and reboot. Many people find themselves running on fumes and burning from both ends by the time they start their treatment plan and make major lifestyle changes. We call this “survival mode” when you are on autopilot trying to make it through.

Being present and aware of your feelings can help you transition out of survival mode and into more meaningful experiences with your chronic illness. One of my favorite mindfulness strategies is the STOP exercise because it literally makes you stop what you’re doing and check in with your mind and body before responding. 

Mindfulness strategies, including intentional deep breathing, are known to improve mental health related symptoms. It reduces stress levels, improves your ability to think clearly, and even helps you relax when you need it. This is a vital step, and I highly recommend you not skip it.

A Chronic Illness Therapist or Health Psychologist can help you talk through your feelings as you grieve and adjust with your health diagnosis. You’ll learn skills to make the emotions more bearable so that they take less of a toll on your body. All of this helps to work towards accepting your life with illness, which is a daily process.

Your family and loved ones can also participate in those sessions to help you feel more heard and understood when your emotions come up. They can also learn more ways to cope with their own emotions relating to your health diagnosis. 

Be Present with the “New You” with a Chronic illness

Have you ever noticed thinking that you want to trade your body in for a new one if you could? You’re not alone. Most chronically ill people develop a challenging relationship with their bodies when it interferes with them living the life they want, especially when symptoms persist at high intensity over time. 

Again, that’s a real experience. And I don’t blame you for feeling that way.

You didn’t ask for this to happen, and you want things to get better. While I can’t promise you a cure or a different body, I encourage you to use the power you already have – being present and building a healthy relationship with your body as it is right now. 

You’ll likely notice that certain things have changed about you (i.e., appearance, hobbies, motivation, activity levels, etc) since being diagnosed with your chronic illness. That’s just to name a few. Over time you can begin to feel like you’re having an identity crisis because you don’t even recognize yourself anymore. 

It’s a scary moment to realize that you don’t recognize your life anymore. All of the tweaks and changes (intentional and unintentional) make it hard to feel connected with things that matter. And truthfully, you may not even know what matters most to you right now. 

Being present with the you of today is where you can start to explore that with curiosity.

Here are some tips to learning who you are today with your chronic condition:

1. Make a new routine based on your current health needs.
2. Pay attention when your body starts to communicate its limitations (and listen).
3. Explore new hobbies (indoor or outdoor).
4. Make a list of activities that you enjoyed for the week. (This list can be a good reference for the harder days).

Being present with what’s new can be scary and uncomfortable, but you can also learn a lot of valuable information that transforms your life during this period with your health. Give yourself permission to learn about the you of today so that you can feel more confident and connected with yourself. 

This mind-body connection will also help you when you need to speak up for yourself in the long run, informing others on how things have changed and what you need to look differently.

#5. Learn about Your Chronic Condition

Were you knowledgeable of your chronic condition before you were diagnosed? Perhaps you heard of someone else that had been living with that specific chronic illness or saw something about it on television?

It becomes a different reality when you are the one living it.

How is it known to impact the lives of people that it touches? Can your illness look differently from other people? Explore how your illness presents itself and what it means for you right now.

Learning about your chronic illness equips you with more ways to take care of yourself and participate in more fulfilling experiences, in spite of having a chronic health diagnosis.

Look into organizations and chronic illness resources that support those living with your condition. Also intentionally seek out people with your diagnosis that are living meaningful lives. Notice components of their lifestyle, treatment plan and support circle that have helped them over time. How do they endure the hard days and find peace in their life despite their health condition?

Allow yourself to ask these questions. Sometimes the information you receive may not be the most exciting to hear, but it gives you more of an option to proceed with self-compassion and hope. 

Why do I feel worse when learning about my chronic illness?

When learning about your chronic health condition you might be tempted to spend a lot of extra time taking in information. Here’s a rule of thumb to remember:  Too much of anything can be too much. So it’s important to approach your health learning process with balance.

Oftentimes people find themselves spending hours at a time searching online to figure out what certain symptoms are and how to manage their condition. During that time you will likely come across scary information that can make you feel helpless, doom and immense worry about your future. 

Pace yourself by spending no more than 30 minutes at a time researching your health condition. Also be mindful of where you’re looking for information. I recommend peer reviewed research articles, educational brochures and books written by experts in the field about your health condition. Once your 30-minute window has ended, close it out and focus your attention elsewhere.

Your mind and body will thank you later.

What to Do With the Information I Learn About My Health Diagnosis?

You will need to devote energy and time to activities and supportive people that give you a sense of fulfillment – not doom and anxiety. Do things that give you a gentle distraction but also make you feel good. 

Furthermore, be sure to take this information you’ve learned about your chronic condition to your medical provider to discuss further. Make sure that this information actually applies to you, because your health condition may not affect everyone the same way.

Give yourself the space and time to learn what your illness means for you and move accordingly. Remember that you will learn what’s needed over time. Be gentle with yourself and you figure it out. 

#6. Show Yourself Compassion

Your life with a chronic illness is a marathon – not a sprint. And the best way to help yourself get through it is to be gentle, understanding and compassionate with yourself moving forward.

A common tendency when diagnosed with a chronic illness is blaming yourself when you don’t meet your own expectations. The inner critic can come out pretty strongly when you notice yourself unable to meet certain standards you were used to. Be mindful that this inner critic is likely influenced by many different people and experiences in your life that no longer serve you. It’s okay to put that to the side for now.

Right now is not the time for you to beat yourself up and criticize every move that you make. Now is the time to practice self-compassion and grace as you figure things out. So instead of beating yourself up, remind yourself that it’s okay not to have it all figured out right now.

Finally, another way to practice self-compassion is to honor your limitations. You’ll be trying new things to figure out what works for you in different situations, but unfortunately not every situation may turn out as you would hoped. Acknowledge that you gave it a try and make adjustments as needed to move forward.

One day at a time. You can do this.

Continue reading to learn what to avoid after diagnosed with a chronic illness.

Next Steps for Adjusting to Life with a Chronic Illness

I help teens, adults and families who are living with chronic illnesses and the emotional toll that it can bring. Therapy is a powerful tool that can help you find meaning in your life after diagnosed with a chronic condition. 

The skills you learn in therapy help make the journey more bearable as you adjust to your new norm. You don’t have to figure this out alone.

Schedule your first appointment with me by booking a free 15-minute consultation.