About the Author: Rachel is a 21-year-old chronic illness warrior who was born and raised in Texas. In part 1 of Rachel’s blog, she shared her diagnosis journey with gastroparesis and how she learned to accept her feeding tubes. Today, she’ll be sharing some of the important lessons she learned along the way, in the hopes that they can help other people going through similar health journeys. Connect with her on Instagram!
What My Chronic Illness Journey Taught Me
Throughout my chronic illness journey, I learned how to take care of myself not only physically, but also mentally. I did a lot of growing during my mental health treatment, and I hope that what I learned throughout my journey can help others who are struggling with any sort of health condition. Here are some of my biggest takeaways:
Uniqueness Should Be Embraced
- My body works differently than others and that is okay.
- My body may look different than the average person, but that does not make me ANY less beautiful!
- I am so much more than my body. True beauty comes from within. It was hard to love myself in a non-functioning body, but there is so much more to me than how my body looks or works. I am creative, smart, caring, funny, loving, and passionate.
Self-Care is Essential
- Self-care is one of the most important things you need to do for yourself. Sometimes that may mean going to therapy, journaling, or treating yourself to a new outfit. Other times, however, it may require doing more difficult things like cutting unsupportive people out of your life or taking medications that make you feel sick.
- Make sure you are addressing not only your physical health, but also your mental and emotional well-being.
Disability is Not A Bad Word
- Although the word "disability" is surrounded by a lot of stigma, it's simply a description for physical or mental challenges and diagnoses that people deal with.
- Disability is not a death sentence; I can still follow my dreams. I do not have to give up on them due to my health.
Pain Shouldn't Be Punished
- I have learned that there is a huge stigma against people taking pills, especially psychiatric medication or narcotics. I've even had people accuse me of being an addict just for trying to manage my pain.
- This is actually one of the biggest reasons I advocate for “Don’t Punish Pain,” a movement calling for opioid reform.
Community is Key
- It is ok to ask for help. I struggled with this one a lot, as I had to get accommodations for school. It's not “taking the easy way out,” it's allowing me to have an even playing field with other students who do not have my obstacles. It is also ensuring that I can take care of my health while attending school.
- I joined Facebook groups and made an Instagram page to connect with fellow chronically ill people who understood what I was going through. I have made so many new friends and felt very understood and supported.
- The people in the chronic illness community are strong. We go through so much and you cannot always tell from the outside.
Every Journey is Different
- No one’s life is perfect. I don't have to be ashamed of my story. This is my life and I love who I am becoming.
- Everyone’s journey looks different, even if they have the same diagnosis.
- You never know what someone is going through just by looking at them. They could be batting a mental illness or an invisible one.
- Don’t take life for granted, you never know how much time you have or how many days you will be able to function.
Advocacy Makes A Difference
- Not every doctor is 100% right all the time, sometimes you have to get a second opinion or advocate for your care.
- Advocating for the chronic illness community is a new passion of mine. Everyone deserves fair treatment from people, jobs, doctors, etc.
- We need to fight for accessibility for everyone. The world was built for able-bodied people, so we have to work to change the status quo.
Inner-Strength and Hope are Vital
- You are much stronger than you think you are.
- Find the good in everything. I never wanted an ostomy, but I made a list of reasons why it would be good and how it has positively impacted my life. Exercises like this really helped me out.
- No matter how hard it gets, never lose hope. Things can get better if you fight for it.
What are some things you learned along your chronic illness journey? Let us know in the comments or email us at firstname.lastname@example.org. We love hearing from our community members!
July 14, 2021
My twenty year old granddaughter is going thru this same thing. I found your journal very helpful and positive. Thank you for writing it!