5 Things Not to Do After Receiving a Chronic Illness Diagnosis
It’s not uncommon to receive tons of advice telling you what to do after receiving a chronic illness diagnosis. However, not enough people talk about what isn’t helpful after you get the big news about your health. Here are five things not to do when you get the news.
#1. Don’t Ignore Your Feelings about Your Diagnosis
You might experience many different feelings after receiving a chronic illness diagnosis. After all, it’s major news about your health that changes the way you approach your life.
Many people feel a sense of relief when they get a health diagnosis because they’ve been spending a lot of time managing health symptoms without answers. But then there are other times where the news can be absolutely frightening with a lot of unknowns.
On the other hand, it’s not uncommon to feel like you have to ignore your feelings all together.
Why You Might Ignore Your Feelings when Diagnosed with a Health Condition
It’s hard living in a society around people that don’t seem to care when you are having a tough time, especially when receiving a chronic illness diagnosis. Your experience is something foreign to others that don’t live with a health condition, which can make it difficult for you to be understood.
Many chronically ill people express feeling ignored from their medical providers, showing signs that they have been victims of medical gaslighting. You may feel that it’s not okay to tell your doctor that you are in pain or experiencing other symptoms.
There are immense feelings of shame and guilt that you feel as a result of these types of interactions, negatively affecting your mental health.
The people in your personal life may be responding to you in ways that leave you feeling unsupported when managing your chronic health condition. Ultimately, these interactions and relationships make you feel like others see you as a burden, leading you to believe that you are overreacting and focusing too much on how you feel.
That’s unhealthy and all lies.
Here are the facts: Being present with your feelings helps you to meet your needs more effectively.
Whether it’s fear, anger, sadness, worry… All of those feelings matter and help you come to terms with the health diagnosis. Your feelings are to be considered – not ignored.
Ask yourself these questions about your feelings:
- What are your needs at that moment?
- Do you need to request a second opinion about treatment or your diagnosis?
- Are there more answers that you need?
- Do you need to talk with someone about your health condition?
- Do you need time to rest or relax as you think things through?
Considering these feelings and needs help you to improve your mental and physical health.
#2. Avoid Spending Countless Hours Researching on the Internet
After receiving a chronic illness diagnosis, you’re going to want more answers at some point. That’s perfectly normal.
These questions are important for you to ask, and it’s understandable that you’ll want to find these answers to move forward with clarity. But here’s the catch. Don’t spend countless hours of your time going down a dark hole researching your chronic illness all at once.
If you’re not careful, your research could actually lead you into feeling more scared, depressed, angry, confused and stressed, making you feel sicker than you felt before.
My Own Experience with Too Much Chronic Illness Research at Once
When I was initially diagnosed with Relapsing Remitting Multiple Sclerosis in 2019, I didn’t really know much about it. I knew that people in my personal life with MS had mobility aids, but I didn’t know what the health condition was actually about.
Shortly after the initial diagnosis, I noticed that I spent a lot of time searching online to figure out what this health diagnosis was going to potentially look like for me. I needed answers.
Truthfully, my MS diagnosis caught me completely by surprise because I thought I was “doing everything right.” I was eating a healthy diet and was relatively active. So why was this happening to me and how was MS going to interfere with my life?
But what ended up happening was that I was constantly reading online. Some of the information I read made me feel utterly terrified, and I started to imagine all of the worst case scenarios playing out in my life. “Oh no! I’m not going to be able to walk anymore? Am I going to die because of my MS?”
All of these questions brought me to a panic and my mind was so focused on worrying, that I wasn’t even thinking about the fact that there are different forms of MS. And that MS looks different for everyone – including me.
Yes, researching is important but when you’re spending a lot of time looking up your chronic health condition, you will likely find a lot of scary information without an explanation of how to treat it or guarantees that certain outcomes will actually happen to you.
How to Handle the Information You Find After Receiving a Health Diagnosis
If you’re going to do some research, give yourself a minimum of 30 minutes to an hour within a given day to look up the information. Then follow up with your medical provider about the information that you find, because not every symptom or scenario with your health condition is guaranteed to play out for you as it shows online.
Your health journey is yours alone. You are not guaranteed to have the exact same journey as someone else with your same chronic illness. It’s important for you to take information and make sure that it readily applies to what your body is experiencing at the moment.
Give yourself some breaks from social media to protect yourself from information overload, because it can make you feel more emotional, unclear and highly stressed.
At the end of the day, you may or may not have all the information about your health condition right now. But you will get more information through experience and supported learning about your chronic illness over time.
Here are some chronic illness resources to help get you started.
#3. Don’t Isolate Yourself from Others
Six out of 10 people in the United States have at least one chronic health diagnosis. But somehow 40% of chronically ill people report feeling lonely.
How is that possible when the majority of people in America live with a chronic illness?
The people around you may have no idea what you’re going through because they likely don’t have your chronic health diagnosis. Sometimes they may not even realize you’re ill if you are living with an invisible illness.
This is one of the many reasons that your chronic illness can make you feel lonely, like you’re on an island by yourself. The more this happens, you are at risk of depression and higher levels of stress. A sign of depression is isolating yourself from others.
Unless your doctor has recommended that you limit physical encounters due to the nature of your health condition, being around other people that care about you is actually going to become an important part of your health plan. You can help decrease your stress, improve your mood and feel more supported when you surround yourself with supportive people.
This is not the time to close yourself off from the world. Please stay in touch with key people in your life that make you feel seen, heard, supported and valued. This is important because your mental health plays a vital role in your chronic illness recovery plan.
You need the right people around you to help build you up mentally after receiving a chronic illness diagnosis, keeping you from getting trapped in your thoughts.
How to Avoid Isolating Yourself After Receiving a Health Diagnosis
Continue doing things in your community to maintain a sense of normalcy, within reason. If you are still able to follow your typical routine, do that. Be intentional about participating in activities that help you feel like things are continuing to move forward (i.e., work, school, faith-based activities, extracurricular activities, exercise, etc.).
These activities being in your schedule help decrease isolation and focus on living.
On the other hand, if you need to spend more time home managing your health, find ways to connect with others from home (i.e., phone calls, facetime, support groups, having friends or family stop by briefly to check on you). Every bit counts.
#4. Avoid the Urge to Stay Silent if You Disagree with Treatment/Diagnosis
As a chronic illness therapist, I hear stories about how others feel anxious in a medical appointment after having talked with her doctors about their health diagnosis. Some people leave the appointments feeling helpless, leading them to go silent.
This is a really dangerous place to be in after receiving a chronic illness diagnosis. The time after receiving your diagnosis is not the time to go silent. It is time to speak up.
All the thoughts, questions and feelings that you have after receiving a health diagnosis are valid. This is the time for you to ask your doctor the necessary questions, even if you don’t agree with everything your provider has said to you.
If you don’t immediately feel comfortable speaking about things in your doctor’s office, select someone that you trust to attend the doctor’s visit with you. You’ll feel supported and reminded that someone has your back. Ask for research on the specific treatment approach and you request alternatives if you are uncomfortable with a treatment recommendations.
You have the right to have all the necessary information to make an informed decision. You are your biggest advocate, so don’t go silent. Speak up for yourself and trust your gut.
#5. Don’t Blame Yourself for Your Health Diagnosis
Society has the view you must be doing something wrong if you are chronically ill. Some of the ways that this comes across is when people immediately start giving you recommendations when they find out you’re ill.
Suggestions like exercising, eating a fad diet and taking supplements as a response to learning you’re chronically ill assumes that you’re not doing enough. These assumptions can make you blame yourself for your chronic illness.
Truthfully, my own mother even blamed herself when I was diagnosed with MS because she figured I must’ve gotten it from her family (after doing hours of research).
At the end of the day, we can’t always be sure of where our chronic health condition comes from. Chronic illnesses do not discriminate against anyone… You can be diagnosed with a chronic illness even when you’re exercising, eating a healthy diet and even going to therapy every week.
Although there is a higher risk of receiving certain chronic health diagnoses when practicing a number of habits over time, it does not exclude you from being diagnosed even with the cleanest lifestyle.
Regardless of where it came from, now is not the time to blame yourself.
How Self-Blame Can Make You More Sick
As previously mentioned, unsupportive relationships and gaslighting experiences can make you doubt yourself, thinking you’ve done something wrong. But consider these questions: How will blaming yourself help? Will it change your situation? Will it make you feel any better?
Researchers say that self-blame can actually make you sick and contribute to a decline in both mental and physical health. It will start a vicious cycle of beating yourself up, leading you to feel depressed and more stressed.
You don’t need or deserve that.
Once you receive a chronic illness diagnosis, it’s time to focus on how to support yourself – not tear yourself down. This is not the time for you to meditate on unhelpful, toxic messages from society. Instead focus on the messages that support you in showing up for yourself right now.
How Do I Support Myself After Receiving a Health Diagnosis?
Consider what you can give your body and mind to support your health in its current state without judgment. This helps you focus on getting through the hard days with a chronic illness.
If you’re having a hard time shifting your mindset forward, place yourself around people that encourage you. Here are some ways to do that:
- Join a chronic illness support group
- Schedule an appointment with a chronic illness therapist
- Remove access to negative, unsupportive messaging about your health (i.e., social media groups, movies, news broadcasts, health articles, or negative people)
- Engage in activities that make you feel happy or encouraged (i.e., hobbies, passion projects)
- Practice using the GLAD Technique to practice thoughts of gratitude.
Everything you take in mentally and physically needs to support you in focusing with hope – not focusing on the past with judgment.
Next Steps for Chronic Illness Management
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 figure out what’s next after receiving a chronic illness diagnosis.
Although the journey with a chronic health condition is hard, therapy can make it more bearable by having the hard conversations, exploring your needs and practicing skills that give you more confidence and less stress.
You can schedule your first appointment with me by booking a free 15-minute consultation call.