13 Pieces of Advice for People Who Just Received a Chronic Illness Diagnosis

To a person who’s just received a chronic illness diagnosis, life can suddenly seem uncertain.

There’s no one who understands the storm of emotions and questions a chronic illness diagnosis brings better than people who have been there themselves. So, we asked our Mighty readers with chronic illnesses what advice they would give to someone who has just received a diagnosis. They have some words of wisdom for others just beginning their chronic illness journeys.

Here’s what they told us:

1. “Connect with a support group ASAP, even if it’s only online. Having a group of people who can share in your ups and downs and empathize with your struggles can change your life.” — Sarah Moore

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2. “When things are at their worst is when you find out how very strong you are. You’ll find strength you didn’t know existed — even if you have to borrow someone else’s for a while. Don’t hesitate to lean on someone when you need to.” — Vicki Blank

3. “Don’t leave the doctor’s room until you have the full picture. Ask questions, even if they sound ridiculous. Keep asking if you don’t understand the answers. You are never wasting doctors’ time; it’s your time!” — Sharilaine King

4. “Take time to grieve what you’ve lost. Then you can focus on what you might gain.” — Zoann Murphy

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5. “Get some mental health support. A chronic illness can cause depression and anxiety, plus you’ll go through so many emotions every day… Asking for help can be a huge challenge and accepting yourself, your limitations and frustrations is a daily battle, so help is a necessity, I think.” — Victoria Bartle

6. “Never give up. Every day is a second chance for a great day. And never underestimate your friends’ understanding.” — Cindy Antley-Horton Tullos-Serda

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7. “Your attitude, your will to live, your ability to ‘do it anyway’ far exceeds the effects of comments, stares, lost friends and family and brokenness which will present itself at times. You’re not ‘doing it wrong.’ They are.” — Aimee Stratton

8. “Stay hopeful. Medicine is constantly progressing, and doctors and scientists are always coming up with new treatments and therapies. Also, find a good support group and contribute to awareness efforts if you are able to do so.” — Melanie Atzili

9. “A diagnosis is important when it comes to treatment and recovery, but it doesn’t define you. Don’t let your illness become your identity.” — Monica Jean Cozadd

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10. “Try and keep a health diary, obtain copies of all medical records and test results for future reference (you are bound to see various specialists and this will help when you keep having to tell your story) and find a relevant support group either locally or through Facebook — it will help to reduce the feeling of isolation that you may experience.” — Dee Griffiths

11. “You are so much stronger than you think. It is not going to be easy, but you can do it and can still have a beautiful life with this disease!” — Tabitha Hodges

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12. “It’s OK to cry, it’s OK to be mad and upset. What you can’t do is blame yourself. You didn’t do anything to cause this, and you can’t really do anything to cure it (yet). Your life is going to change a lot, but not all of the changes will be bad. Many people have said that ‘Your weaknesses are also your greatest strengths.’ You will find this to be very true when living with a chronic illness.” — Erin Vago

13. “Be your own health advocate. It’s your body and you know what works best for you.” — Margo Lecompte

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Editor’s note: These responses are based on individuals’ experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

If you have a chronic illness, what’s one thing you’d tell someone who just received a diagnosis like your own? Let us know in the comments below.

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