Have you been diagnosed with a chronic illness? Receiving this news can bring on a wave of emotions and questions…and for many, it can be one of the worst days of your life.
Here are some examples of chronic illnesses: Arthritis, Cancer, Chron’s Disease, COPD, Cystic Fibrosis, Diabetes, Epilepsy, Heart Disease, Kidney Disease, Lyme Disease, Lupus, Multiple Sclerosis, Parkinson Disease.
Chronic illness does not mean death sentence, but truthfully – it can feel like one. After all, if you were like me, you likely went straight down the “rabbit hole” called Google to search all things there is to know about your medical condition – the good, the bad and the really ugly!
There are many articles out there about average life expectancy and poor quality of life when living with a chronic illness. Perhaps you’ve been tempted to read them? Did they help you to feel calm? Most likely not. I can honestly say I crumbled to pieces and felt so much worry after reading them.
Several years after living with my own chronic illnesses (Lyme Disease – 8 years; Multiple Sclerosis – 2.5 years), I can say… it’s not an easy feat, but living a life of wellness can be possible if you have the right information and supports on your side. Here are 7 important things I’ve learned to help after being diagnosed with my own chronic illnesses.
#1 – Breathe
Once your physician informs you of your chronic condition and explains reasons for your body’s responses, you may experience so many different emotions. I was in disbelief, but did not get much time to let it sink in since I had to begin immediate steroid treatment in an oncology center. Scary stuff! Whether you need immediate intervention like me, or you have more time to transition into your new norm, take some intentional time to catch your breath and soak in the news – alone or with someone you care about. Giving yourself this time will put you in a better position to support yourself moving forward.
#2 – Allow Yourself to Feel
What many people, including physicians do not recognize is that receiving the news that you have a chronic illness can be a traumatic experience. What do I mean by this? Thoughts may begin to race asking questions like: Am I going to die? Emotions of fear, anger, sadness, shock and disbelief come and go. Once I allowed myself to feel those emotions, it released so much tension from my body and I slept much better at night. My thoughts became more clear. Pushing all of that down only prolongs the wait for your body to crash.
#3 – Get the Facts
Now that you have given yourself time to come to terms with what is happening, it is time to equip yourself with information that helps support you in the days ahead. You may have questions about what to expect, which is 100% normal. Write down your thoughts and questions that come to mind when you are away from the doctor. Request pamphlets or handouts that you can review in your personal time. Be mindful, it’s not best to stay up late hours of the night researching worst case scenarios online (although you may be tempted). The key is to inform yourself of ways to manage the condition successfully (medication, diet, exercise, hospitalization).
#4 – Develop a Support System
Depending on how far along your medical condition has progressed, you may have noticed that it can be difficult to manage alone. It’s not impossible, but it can be helpful to have select people that can support you (even at the most inconvenient times) when needed. I know that for some, it can be difficult to ask or even accept help when you’ve been used to doing so many things on your own. Types of support include family members, friends, your employer, physician, therapist and a support group.
Here are some ways I have received help:
- Babysitter support
- Help with groceries and cooking meals
- Rides to medical appointments
- FaceTime calls with friends and family
- Take time off from work when not feeling well
- Speak with a therapist about your experiences
Please know, you are still great even if you ask for help! Take some time to consider who you trust to help with big or little things (i.e., gentle listener, help with homework or a work project, watching the kids or even cooking a meal). Having a chronic illness does not mean that all of your days will be hard, but you’ll need to be able to rely on someone when your body feels ill and weak.
#5 – Give Yourself Some Grace
You may be tempted to make some comparisons when coming to terms with the news. Whether you are comparing yourself to previous abilities and health… or you are focusing on the health and abilities of others with/without your same medical condition, STOP and give yourself some grace. Wondering why you are not feeling or looking a certain way now that you have a chronic illness will not help you get better (trust me… I’ve been there). Instead it will make you feel worse! This is the opportunity breathe and notice moments of GRATITUDE rather than being too hard on yourself.
My own thoughts of gratitude included:
- I’m grateful that my doctors figured this out now so that I can get treatment
- I’m grateful that treatment is available for me
- I’m grateful that I can take time off to heal
- I’m hopeful that I know more of how to care for myself
#6 – Make a Plan
Once you get information about your condition, you’ll need to make a plan to take care of yourself moving forward. Your plan may include making major or small lifestyle changes to ensure you can live a life of wellness with your chronic illness. Writing your plan out and discussing it with your physician and supports can help you stay on track.
Here’s the thing – some of these changes are not exciting and may be difficult to make initially, but they are absolutely necessary to living a life of wellness. Your physician can be helpful in determining what is required or optional to live at your best, so be sure to ask those questions! Here are a few changes to prepare for:
- Medication management
- Increased doctor visits with more than one provider
- Dietary changes
- Environmental changes in case of disability
#7 – Learn to Prioritize
While you make these changes, be aware that you will need to prioritize! Some of the things that were the most important to you prior to diagnosis may need to take a backseat temporarily until you get adjusted. How will you know what to prioritize? Consider how much energy (physical and emotional) that you have to invest in all things throughout your day.
Will you need to sit out from the party with friends due to fatigue or pain? Other days, those dishes may need to stay in the sink and get washed later, because your body needs rest. You may need to take medication for your pain instead of sleeping it off like you’re used to. I know personally it hurts having to make those decisions, because it seems like you are no longer yourself… But you may not always need to make these sacrifices. A life of wellness is developed one decision and act of self-care at a time.
Next Steps for Emotional Healing
The initial stages after receiving a chronic illness diagnosis can be a bit of a rollercoaster, but the good thing is that you don’t have to go through it alone. Speaking with a therapist who is knowledgeable of chronic illnesses and pain can help you feel heard and supported. It can be a much needed space to unpack all of the sudden changes in your life, including what is happening to your body.
Adorned with Life, LLC provides mental health therapy to teens and young adults who are living with chronic illnesses and the emotional toll that it can bring. We can talk through your personal experiences, build more supports and help you learn components of living a life of wellness. Although you cannot control certain aspects of your illness, your mindset and intentional actions afterwards are big steps for healing and feeling in control.
You can schedule your first appointment with me by booking a 15-minute consultation call using this link.