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Home Life, My Journey

A Decade of Chronic Illness: Life Lessons Learned

In December of 2019, I attended an event where they spoke about 2020 goals. I was all for learning different strategies to help me come up with some fantastic goals. But then the speaker said, “Before you tackle your goals, take time to reflect on every year from this past decade.” 

I thought back to 2010 and immediately started to tear up (and I all I could think was, “Don’t cry, don’t cry.”). 

2010 started out as an amazing year. I was dating my husband, and everything was fantastic. Things were going so well that we got engaged in May! I was so excited!

My life was finally going as I’d hoped, or so I thought. In late July of 2010, the symptoms of Functional Neurological Disorder (FND) were triggered while I was battling a terrible infection, and my life has never been the same since. Just the thought of that time in my life still upsets me so much. 

This last decade has been a challenging one and one that I could never have imagined. But despite being gaslighted by doctors, not knowing what was going on with my body for over six years. Then being denied specialized FND treatment by insurance companies, and having my professional career go down the toilet, I’ve had some amazing experiences, and I’ve learned a lot too. 

Here are some of the life lessons I learned in the last decade (in no particular order).

  1. I am the only expert on my body. Doctors are here to assist me in helping me find ways to treat me, but I know my body. My body tells me exactly what it needs or doesn’t need. I will always trust my body and will no longer second guess what I feel because a doctor doesn’t believe me.
  2. Doctors are human, and they don’t know everything. There is no way a doctor can know me and how I feel in only 15 minutes. Yes, some diagnoses are obvious, but a lot are not. If a doctor dismisses me or tries to pull any ego shenanigans, he/she is fired.
  3. I’m smart enough to figure out how to find treatment when no one else will or can help me.
  4. Patience! Lol. If you know me well, you know that one of my flaws/quirks/annoyances (whatever you want to call it) is IMPATIENCE. 
  5. I worry too much. 
  6. I learned (and am still learning) to set healthy boundaries.
  7. Food IS medicine. What I put in my body does have an effect on how I feel. 
  8. Self-care is so important for EVERYONE.
  9. Planning a stress-free and low-cost wedding is doable. It’s called a small wedding.
  10. Motherhood is the most amazing, challenging, frustrating, and magical thing I have ever experienced. Becoming a mom, believe it or not, is something I’ve wanted since I was a little kid. It was one of my top goals in life, and I’m so grateful that I’ve been able to experience it.
  11. I’m no good to anyone, including myself, if I don’t make my health my #1 priority.
  12. Marriage is about love, friendship, partnership, respect, compromise, and more. And it’s always evolving. 
  13. How I speak to my husband dramatically impacts our relationship. In other words, I learned how to stop nagging him. (Here’s the book that taught me how.)
  14. Communication with my husband about the effect chronic illness has on our relationship has been crucial for us. While it is a difficult subject to talk about, it has brought us closer together every single time. 
  15. I am mentally and emotionally stronger than I thought I was. Living life when your body isn’t functioning takes strength, courage, and determination. I knew I already possessed these traits, but living with a chronic illness took them to another level that I didn’t think was possible.
  16. Everyone has experienced great suffering or will experience great suffering in their lifetime. 
  17. Sometimes I am the only person that can advocate for me. 
  18. To be kinder and easier on myself (also still a work in progress). In the beginning, especially, I would have this immense feeling of guilt when I was laid out on the couch, unable to do anything but watch TV. I’ve learned that when I’m in this state that I just need to be and everything will work out or won’t get done, and I’ve learned to be okay with that (for the most part. Probably 80% of the time. Like I said a work in progress. 😉)
  19. To stop comparing my life and myself to what I see on social media. We are all on different paths that are not comparable. 
  20. Navigating work while chronically ill was more complicated than I could have ever imagined.
  21. Having a slower-paced life doesn’t make it less meaningful; it just makes it different. And different is what makes us all unique.
  22. Alternative medicine can be just as powerful as western medicine. All forms of medicine possess strengths and weaknesses.
  23. As scary, sad, and hard as it may be, leaving toxic relationships/situations were one of the healthiest decisions I’ve ever made.
  24. My change to a positive mindset changed my life for the better.
  25. Discovering self-compassion changed my life in a monumental way. I believe everyone with a chronic condition should consider practicing it. It is that powerful.
  26. Learning productivity hacks helped me tremendously in getting things done with limited brain capacity.
  27. I can still learn how to do new things, even while living with brain fog.  
  28. To grieve for my former self and love my new self completely.
  29. Purpose can come from life experience.
  30. To work with my body instead of against it.
  31. I am still somebody, even if I am no longer an independent athletic woman.
  32. I can still be proud of myself and have success in health, life, and work. It just looks a little different from mainstream success.

What are some lessons you learned in the last decade? I’d love to read them in the comments below.

Pin for Pinterest for Decade of Chronic Illness

Sara at Managing Chronic

Sara has worked in corporate America for almost 15 years, and she's worked the last eight years with FND. Her FND comes with paroxysmal dystonia, chronic fatigue, brain fog, sensory overload, muscle pain, and more. She is currently a part-time career woman, a mom and a wife.

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  1. Thank you for your transparency. I especially appreciated the life lessons and references. Very valuable.

    1. Thank you, Sandy. I really appreciate your comment. 🙂

  2. Hi Sara, I love this list! FND is life-changing and not for wimps! My FND journey has gone on for 20 years now. My lessons learned are very similar to yours. It hasn’t been easy and I wish it wasn’t part of my life, but I’m grateful for the strength I’ve gained along the way. Thanks for sharing your story. Wishing you all the best!

    1. Thank you so much, Max! I agree the amount of personal growth and strength gained is something I’m grateful for too. Wishing you all the best as well! 🙂

  3. Madison says:

    Hi, I wanted to say thank you for your blog and this post. I’m in tears as I write this, thank you for the encouragement and tips for dealing with FND. I’m 26, was diagnosed about four years ago, and am still struggling with grieving the loss of so much of what I did and even drew identity from. I used to be a dancer, martial artist, volunteer, and was working on my career; I lost all of that within a few months. But through this process I have learned and been taught so much about what it means to have value. All that being said, thank you again for the advice and encouragement from someone who really understands the struggles of dealing with FND.

    I wish much peace to you and your home,

    1. Madison – So sorry for my delayed response to your comment. I had to take a step back from my blog for a bit.

      Thank you so much for sharing your experience with me. My heart goes out to you. I know the feeling you are going through right now. It is so hard to lose everything you’ve worked for and identified with all at once. But I’m also happy for you that you’re learning to live your life with FND. It can be a long road but I think you’re already on the right path.

      Please feel free to reach out to me anytime. I wish you all the best. – Sara

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