There are many things I wish I knew when I was diagnosed with a chronic illness. How will this change my life? What do I do now? Is it OK to feel unhappy about it? Life-changing events, like chronic illness, can be difficult to handle. It’s no wonder I was overwhelmed and had so many thoughts swirling around in my head.
While it’s nice to have insight from medical professionals, they don’t always know what it’s like to live with chronic illness. A lot of chronic illness education comes from personal experience, and, if you know the right places to look — for example, The Mighty’s chronic illness community — you can learn from others with your condition. I’ve learned so much since receiving my diagnosis, I wish I had a time machine so I could go back and educate myself.
Whether you were diagnosed 10 days ago or 10 years ago, there’s a lot you can learn from the chronic illness community. To help you on your journey, we asked The Mighty’s chronic illness community what advice they would give someone newly diagnosed. Read on for some words of wisdom and share this with anyone in your life who could use some insight from their fellow chronic illness warriors.
1. Know that it’s OK to grieve.
“Be kind to yourself. Grieve however you need to grieve. But remember that you can still live your life and accomplish your dreams. Take your time.” – Hunter H.
“It’s going to be a long time to find a new normal for yourself. Allow yourself time to grieve and get to know your body. Sometimes only support [comes from] people you have never met and that’s OK! You are loved and we will love you until you learn to love yourself.” – Mandi K.
2. Have an open mind.
“Be open-minded about things. You may have to change things in your life and try new things.” – Mackenzie P.
3. Take a step back.
“Just breathe. It’s all too much at once. I never had all this information and I think it would have been too much at once. [Take it] step by step at your own pace. Come back to it slowly. I’m 17 years in and still learning.” – Finn C.
4. Find people in similar situations.
“You will adapt and find new ways of doing things, but you must be kind to yourself on bad days. Also, find others like you in support groups. Once you’ve found your tribe, life will be easier.” – Julie G.
“Reach out to local support groups and national organizations for resources.” – Veronica M.
“Include in your support system others with the same illness. Having loved ones who support you is crucial, but having loved ones who can truly relate to what you’re going through is lifesaving.” – Kris P.
5. Be patient with everything.
“Be patient with yourself and your loved ones as you adjust to a new normal.” – Tamaran D.
6. Figure out what works for you.
“Read everything and listen to everything, but choose your own path, choose what works for you! Take your time with this, be patient and don’t let others decide for you. Know that you are enough and valuable, just as who you are. And it’s okay not to feel okay.” – Edith D.
“It’s not going to be easy. That might seem obvious with the physical changes and restrictions. But it’s not just that. Depending on how severe it is and what type, chronic illnesses can affect every single thing, from which friends stick around in your life, to your major life goals, to how often you can shower. So take the time you need to readjust and try to remember through it all, life throws curveballs of different types and strengths at everyone; this just happens to be yours. But you are strong enough to handle it and hopefully one day, you will be able to recover from it. But in the meantime, you will make the very best of the life you do have.” – Fatima H.
7. Find a support system.
“Your support system is everything. Make sure you are surrounded by people who love and accept you. These are the ones who will stay by your side no matter what.” – Nicki S.
8. Don’t be so hard on yourself.
“Be gentle with yourself. This will be a huge adjustment, and you are doing the best you can. Do not be afraid of asking for help!” – Britt B.
9. Advocate for yourself to doctors.
“Learn how to advocate for yourself because doctors are just there to get a job done. Not to undermine their work, I’m so thankful for it, but many times they just want to rush you out and move onto the next patient, so you need to learn to make yourself heard.” – KP P.
“Never listen to a doctor who claims to know how you feel better than you do. They may be a medical professional, but you are the expert on your body and how you feel.” – Tabitha M.
10. Laugh at yourself.
“Try to maintain a sense of humor. It will help you get through some rough patches.” – Anita T.
11. Know it’s OK to be sad about it.
“My advice would be to remember that taking breaks and even crying are not signs of weakness or the end of everything. It is a necessity and despite what people may think, you’re allowed to care for yourself and feel things. We are all human and feel a variety of emotions and feeling down is just as okay (and acceptable) as feeling happy.” – Zara G.
12. Give your loved ones access to resources.
“I brought my hubby with me to my doctor appointments so he could understand the nature of my illness and what I’m going through.” – Alicia M.
13. Take it slowly.
“Take it one day at a time. You will have good days and bad, but don’t give up and never feel guilty for taking care of you.” – Christine S.
“Don’t expect anything to happen as quickly as the books say. Take one step at a time, set the tiniest goals possible, but take pride in what you do achieve! You are enough! Don’t let anyone tell you differently.” – Sara G.
14. Your mental health is just as important as your physical health.
“Be kind to yourself while you find some new normals. Take care of your mental health because pain takes a toll and you deserve to be cared for.” – DeAnna G.
15. Keep track of your days.
“Keep a journal and record everything because when you have your very bad days, you can pick up the journal and see that there are good days and even great days. It will give you the strength you need to endure.” – Barb L.
16. Feel whatever it is that you feel.
“Give yourself permission to get angry, sad and frustrated. Be kind to yourself, be selfish. You know how your body, if something doesn’t feel right then scream for answers if you have too.” – Catherine T.
17. Believe in yourself.
“Your life has just changed and only you will understand. Believe in yourself, learn to accept your boundaries and live the right way for yourself, not others.” – Mark W.
While reading about others’ experiences can be helpful, know that it is OK if you don’t relate. Your journey and feelings are unique to you. If you need help processing your diagnosis, reach out to someone you trust or check-in with The Mighty’s chronic illness community by posting a thought or question with the hashtags #CheckInWithMe and #ChronicIllness.
Looking for more resources? Below are some helpful articles from our community:
- 7 Things Your Doctor Won’t Tell You When You’re Diagnosed With Chronic Illness
- The Hardest Part of Being Diagnosed With Chronic Illness as a Teenager
- The Exhaustion of Fighting With Doctors for a Diagnosis
- 13 Chronic Illness Tips for the Newly Diagnosed
- Hi There, Newly Diagnosed Chronic Illness Warrior