7 Resources For Chronic Illness If You’re Newly Diagnosed
You’ve recently been diagnosed with a chronic illness and are unsure of what to do next. The doctor gave you a diagnosis, prescribed one or more medications and a slew of other provider referrals. However, you need helpful resources for chronic illness to get through everyday life with your head on straight after receiving this big news.
Here are some resources to get your started.
1. Determine if Job or Education Accommodations are Needed
One of the scariest issues that come up when newly diagnosed is figuring out what you need to keep the basic things going (i.e., work and school). Perhaps you’ve asked yourself the following questions:
- “Am I going to be able to keep working?”
- “Will my boss penalize me for missing work or coming in later due to my chronic illness?”
- “How will my kid be able to keep up with school when they are too tired to focus or need to constantly go to the bathroom?”
The good thing is that you can get answers and resolve those issues with the support of your employer and kids’ school by requesting accommodations (which is within your rights by law).
Here is a list of sites providing resources to start the accommodation process:
U.S. Department of Labor Job Accommodations
The Job Accommodation Network (JAN)
Individuals with Disabilities Act Parent Guide
KidsHealth – 504 Education Plans
KidsHealth – Individualized Education Programs (IEP)
2. National/State Organizations for Your Chronic Illness
Find an organization that provides support for individuals with your specific chronic illness (i.e., National Multiple Sclerosis Society). You can find one by typing a search online (i.e.,“organization for Diabetes”). Most of the organizations include the following information: medical expense support, community and national events, research on treatment advances, educational information about your illness and caregiver support. There are also organizations that generally support chronic illnesses. The EPIC Foundation and Chronic Disease Coalition are key organizations to consider.
3. Information about your illness
Although your medical provider may have provided some initial information about your chronic illness, there is a strong chance that you may still be left with some questions. This is completely normal! Each person with your chronic illness may experience it differently, which is why it’s important for you to know as much information as you can.
Search for books and articles about your specific chronic health condition (i.e., so that you can know all that there is to know (even if you have not experienced all the symptoms mentioned in the book). This can help you learn key terms associated with your illness (i.e., flare, relapse, etc.), get practical advice and plan with your support team how to respond if certain symptoms happen.
4. Find a Support Group
One of the hardest experiences I remember was feeling LONELY when newly diagnosed with my own chronic illness. There is nothing like getting big news and not knowing who else understands what you’re going through. Yes, family and friends may support in the best ways that they know how. But ultimately, there is something different about the support when you’re talking with someone who has been in your shoes.
This is one of the most essential resources for chronic illness because you get to share your struggles, hear how others have coped with the changes and even make some good friends along the way. Many of these groups can be found on national or local organization sites. I host several counseling groups for chronically ill teens and adults. Enroll today.
5. Inspirational Books about Living with a Chronic Illness
It can be hard finding hope and joy after receiving your chronic illness diagnosis, but it’s not impossible! The process can literally be a roller coaster. You can find inspiration and ideas on how to find your joy through reading books from experts and others who live with chronic illnesses of their own.
Here is a list of my favorites:
Finding a New Normal: Living Your Best Life with a Chronic Illness by Suzan L. Jackson
The Anatomy of Hope: How People Prevail in the Face of Illness by Jerome Groopman, MD
How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard
How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard
I Still Dream Big: Stories of Teens Living with Chronic Illness by Penny B. Wolf, MSW
Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms by Ilana Jacqueline
What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body In Revolt by Tessa Miller
6. Listen to Chronic Illness Podcasts
Podcasts are an amazing way to get more information about living with a chronic illness. Discussions cover topics ranging being newly diagnosed, firsthand personal experiences from others in the chronic illness community, inspirational accounts of how others have found hope and meaning, challenges that occur when managing your health, and helpful tips to get through your day.
This is a powerful chronic illness resource because you can listen to a podcast literally anywhere – in your car, while cleaning, while sitting on your couch. A wealth of information and support is literally at your fingertips. Many podcasts are led by people whose lives have been personally touched by chronic illness in some way, whether they are professionals or other chronically ill people.
Here are some chronic illness podcasts that I recommend:
Chronic Wellness with Annette Leonard
The Invisible Not Broken Podcast
Uninvisible Pod with Lauren Freedman
This is Not What I Ordered: A Podcast on Full-Hearted Living with Chronic Illness + Health Challenges
Chronic Illness Support – Samantha Bowick
Chronically Healing Podcast – Jessie Fritz
Lead Your Health with Gina Welds
Emotional Autoimmunity Podcast: Real Life with Chronic Illness
Down to My Last Spoon: Living with Chronic Illness with Ashlyn Hallsworth
The Truth About Managing Chronic Pain (w/Dr. Rachel Zoffness)
7. Speak with a Therapist with a Chronic Illness Specialization
When I was first diagnosed with a chronic illness, I experienced a large range of emotions. Looking back I wish that my own doctor would have recommended that I speak with a therapist as one of my resources for chronic illness – more specifically, one with a chronic illness specialization. Why? Because not all therapists understand what it is like to live with a chronic illness. It’s just a reality…
I’m not saying that therapists without a chronic illness specialization are incapable of helping you, but the chronic illness specialization means they are the best at supporting you through the lenses of your chronic illness AND your mental health. You need your experiences of being newly diagnosed or living with a chronic illness to be a major part of your treatment – not to be overlooked, minimized or rarely come up in your sessions.
I recommend asking your medical provider for recommendations first. If they do not have any referrals to offer, search for a chronic illness specializing therapist through an online directory (i.e., Psychology Today or Find a Psychologist).
Next Steps for Emotional Healing
The initial stages after being newly diagnosed with a chronic illness can be challenging, but the good thing is that you don’t have to go through it alone. Speaking with a therapist and talking with someone 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.
As a chronic illness therapist, I provide individual, family and group mental health therapy to teens and adults who are living with chronic illnesses. Together we can talk through your personal experiences, locate resources for chronic illness and learn practical ways to transition through your new norm with less worry and more support.
You can schedule your first appointment by booking a 15-minute consultation.