30 Tips We Would Give Ourselves On The Day We Were Diagnosed

Before starting this article, I want to thank The Can’t Stop Me Facebook Community on Facebook and all other groups for helping me write this article. The community is a great free way to find support and you can join here.

There is not a day that goes by where I do not think about what life would be like without my illness. A life where I felt “normal”.

This past week I decided to poll the Chronic Illness Community and ask them a simple question: If you were diagnosed today what advice would you give yourself?

The one thing that has become evident is that we can still live great lives with our chronic illness.

Below, I have compiled all of the responses I received from the community. I have to say, we are lucky to have such great support.

Whether you just got diagnosed, or have had chronic illness for years, these comments lift our spirits and are filled with great advice. Also, be cognizant of the drastic difference in advice people give. Everyones illness takes a different course.

Advice We Would Give Ourselves On the Day We Were Diagnosed 

1. Be patient with myself and be more patient than I’ve ever been. It takes a lot of time and energy to learn something new, especially when it’s about your own health, and it’s important to let that process unfold.
2. One of the biggest mistakes I made was researching my condition. I came across so many research abstracts that painted my condition as hopeless with only a 5 year life expectancy. In hindsight, I would wait to research anything until all the diagnostic tests were in and I had consulted with a doctor. That would have saved me so many sleepless nights. The internet is a great resource, but it also needs to be used with extreme care by those of us with chronic or rare conditions.
3. I would stay away from reading other survivor stories until my own story had at least made it through chapter one. I appreciate the stories of others and they bring such comfort; however, these stories set my expectations to high and my personal story has been so different from any that I’ve read.
4. Take it day by day and be positive. Stay away from all of the negative people who dwell on their diagnosis and seek to move forward with cans and not cants.
5. When I was diagnosed, it was like a death sentence and I was told to live everyday like it was the last day of mobility. I was told don’t over stress, no heavy duty workouts, and don’t let your body core temperature rise. I was stubborn and being a personal fitness trainer I love pushing myself to the max, I immediately started training for a competition. It was tough, but I did it with no regrets. It is now 17 years later and my doctor says I look better than my MRI’s and I’m totally functional. I still training my clients as well as myself 5-6 days per week at 63 years young and strong! What would I do differently? Not worry so much and leave it in Gods hands …but nothing else.
6. Pacing. It has been super important in my life with ME. If I forget to pace, I overdo it and and up in bed for days at a time. I would also remind myself that sometimes overdoing it is worth it. I just have to be mindful that there will be a price to pay.
7. Not panic and just focus on looking after yourself and doing happy things!
8. Gain acceptance of my illness as something that is not a punishment. It has an ability to change what I can do but it is not defining who I am.
9. I say keep looking up! That’s where I look when I am sad, confused, angry, even happy. I don’t know all the answers but he does. I just try to use everything I read about this disease to better my days with this disease and have no expectations. I just take it one day at a time and I am so grateful for each one of them.
10. Don’t let the doctor bully you into doing you don’t want to.
11. I would say try to accept your illness! Get a lot of information, receive the help you are offered from your doctors and talk to people about your illness.
12. Do not deny your illness and accept it.
13. Don’t overtire yourself. Know your body.
14. I would say don’t panic! My neurologist told me not to read articles on the internet and while I don’t necessarily agree with her, I should have waited 6 months. None of the things I read about have been true for me.
15. Don’t freak out. You will feel better. Take care of yourself, stay active. Life is still pretty great.
16. Eat healthy, exercise, and keep a good attitude. Everything is going to be O.K. You can handle this monster. Educate yourself so you know what you are up against.
17. Just breath and stay calm. Everything is going to be okay. Find the right support groups. The first one I went to everyone was in a wheelchair and it gave me my first panic attack!
18. You’re not alone. Their is support that will help you. You are gonna be OK.
19. Give yourself time to grieve and expect to have times when you have flare ups and need to grieve again. Learn to say no. It is OK to be selfish and look after your own needs.
20. Be your own strongest, advocate in your healthcare. Only you choose what is right for you.
21. Rest when you need to. You have to take care of yourself first. Stop being friends with the people who are only there when they need something from you. These people cause unnecessary drama and stress that you don’t need. Research everything. Sometimes doctors forget to tell you the side effects of medication.
22. Being diagnosed hurts more than you’ve ever imagined and sucks, but it won’t kill you or keep you down. Keep as active as possible, eat healthy and don’t let this illness make you lazy.
23. Start medication right away. Work on stretching and being active.
24. Do your research, but don’t get stuck in the research phase. You need to take action. Be your own advocate and don’t be afraid to look for multiple opinions. Stop comparing yourself to your past and what others can do. Deal with the now. It’s okay to grieve lost dreams, just don’t get stuck there.
25. Its not a death sentence. There is plenty of living left to do.
26. You’re stronger than you thought and you can handle this illness with grace.
27. Believe in yourself, surround yourself with those that believe in you, and take time to find quality not quantity in friends. You need to have genuine people you can trust.
28. When you have a bad day it’s alright to vent to someone that can take it without judgement. Also learn to journal  your emotions to you can move on.
29. It’s time to become a specialist in your illness. It’s important to learn anything and everything you can. Doctors are smart and helpful but you know your body better than they do. Proving your doctors wrong is fun!
30. Your life will change. Focus on the good things that chance and  set new goals.

I hope these pieces of advice were helpful. I would love to hear more advice! Please feel free to comment below!

Thanks,

Dave