11 Things I Wish I Knew When I Was Diagnosed With a Chronic Illness

These are things I wish I knew when I was diagnosed with Lyme disease. I hope the wisdom I gained while on this journey can help others. I remind myself of the following when having a rough day:

1. You are enough. Even if you can’t get out of bed. Even if you can’t do errands, clean the house or cook. Even if you can’t go to school or work. Even if you feel as if you are the worst parent. Even if all you could do is watch TV.  You are doing the best you can. Your “best” will look different every day. It will look different than other people’s. And that’s OK.

2. You should not feel guilty for having to change your life, your daily routine, your relationships. You have to put yourself first in order to heal. You can’t pour from an empty cup.

3. When you have a chronic illness like Lyme disease, your body is basically screaming for attention 24/7. So give it the attention it needs. Listen to your body and care for it like you would other people, without judgment. Be patient – healing is a journey, not a destination.

4. Forgive yourself. You didn’t ask to get sick, but it happened. It’s not your fault. It’s easy to look back and wonder if you could have done something differently. But that will cause unnecessary stress and worry. Try to accept where you are now and know your actions today can affect your future.

5. You may have to get used to not knowing how you will feel until you wake up. It’s frustrating. Making plans in advance becomes problematic. But it forces you to be more present and give up control, which is something we could all do more often.

6. Healing is two steps forward, one step back. It’s not linear. You will have good days and bad days. You will have major breakthroughs and major setbacks. But all the little steps forward add up. You might not realize this until later.

7. Love yourself through your illness. Self-love and self-care involves more than baths, massages and expensive spa treatments. It includes letting go of guilt, setting boundaries and being authentic. It involves saying “no” if you don’t want to do something. And making yourself a priority.

8. Do something you love every day. This will look different for everyone. Maybe it’s reading a book, or listening to an audiobook or podcast. Maybe it’s painting. Maybe it’s yoga. Maybe it’s watching funny YouTube videos or your favorite TV show. Maybe it’s taking a nap.

9. You might feel alone, but you are completely understood. There is a whole community of people out there who are feeling exactly like you. Find them. Connect with them. No one should have to deal with this alone, and you can easily find community on social media if not in person.

10. Don’t be afraid to share your story. You don’t know who will be touched by your words and experiences.

11. Every day we wake up a new person. Who’s to say that as terrible and miserable as we felt today, we won’t have a great day tomorrow?