Share Your Health Struggle: Empower yourself and someone else

Me at Cheryl event

This past Saturday I spoke at an event hosted by my business coach, Cheryl Wood, entitled Share Your Voice, Make an Impact and Grow Your Profits. It was empowering to see and hear my colleagues share their stories of triumphing over difficult circumstances in their lives. Women spoke of overcoming verbal, mental, physical and sexual abuse, heart disease and tragedies. I shared my story of how I overcame myasthenia gravis and urged the audience to learn how to listen to their bodies. For many of those women, it was their first time sharing their story and each and every one of them walked with their heads a little higher after they had done so.

My experience on Saturday made me think about my struggle with telling people about my diagnosis and why I changed my mind. I was diagnosed with myasthenia gravis during my third year of law school. I already had a job offer from a prestigious law firm after graduation but my last semester was tough. The Dean of Academic Affairs at my law school was gracious enough to give me extra time on my finals and allowed me to wear an eye patch to account for my blurred vision. Studying for the bar exam after law school was even worse as I had to take breaks to rest my eyes. I also had to get accommodations on the bar exam. I had extra time and was allowed a large font. I actually think that this is my first time telling a large audience that I was allowed extra time on the bar. I was scared to tell anyone about my condition and getting accommodations on the bar because I didn’t want to be judged. I thought that people would think that I was a lesser attorney because of it. I took the same approach when I started working. I didn’t tell anyone. I remember a more senior attorney trying to explain a provision to me and I couldn’t read it. I was listening intently while trying to close one eye so that I could see with the other. (When myasthenics experience blurred or double vision, closing one eye allows them to see clearly out of the other.). It was a struggle to keep my illness hidden, but I experienced so much freedom when I finally started to share my story.

Here is why you might want to consider sharing your story:

1. You experience freedom. Have you ever held a secret and then after you shared it you felt relieved? That’s how I felt after I started telling people about my illness. Many people with chronic illnesses and autoimmune diseases fear that they’ll be judged if they open up about them. When I began to share my story, I was surprised to see that people actually respected me more because of everything that I had accomplished despite my disease. There was no judging at all. Remember, no one is walking in your shoes except you and you’re doing a formidable job of thriving with your illness.

2. You build community. After I was diagnosed with osteoporosis I began to share my story with more people. I even opened up at work a little bit. That’s when I found a community of healers and resources that ultimately led to my finding what worked for me. As I continued to share my story, I also found other myasthenics! During the period when I was suffering in silence, I never met anyone with myasthenia, but once I opened up, I began to meet people who could relate to what I was going through.

3. Your story could encourage someone else. There is always someone further along in our journey than ourselves and we are always further along than someone else. When you start to share your story you’re able to help someone to avoid the mistakes that you might have made. I recently met a young lady on Twitter who also has myasthenia gravis. We connected immediately as we had so much in common – we were both diagnosed in our early to mid-twenties and our symptoms got worse after we had a thymectomy. When she was experiencing blurred vision I recommended some remedies that had helped me. I’ve also been supportive of her while she goes through her ups and downs. This relationship would have never developed had we not shared our stories.

I know you might prefer to keep your illness private and that is a personal decision, but if you’re keeping your story a secret because you fear being judged, I encourage you to stand in your power and share your story. Like me and the women who spoke on Saturday, when you share you story, you’ll experience freedom, build community and ultimately, you could encourage someone else.

Now I want to hear from you. Have you been afraid to share your story? What’s holding you back? What are your takeaways from this blog post? If you’ve been moved to share your story, please let me know in the comments below.

– AmiCietta

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  1. Great article! I’m a big believer in sharing your story. Not only is it helpful for yourself and others but it’s a great way to build your community.

    • Thanks Liana. You’re right. I’ve met so many people through sharing my story and can’t wait to meet and encourage many other women with chronic illnesses.

  2. AmiCietta, this is an excellent article. I have usually been fairly private with my health concerns, but you’re convincing me to be less so.

    I love the new website: it is really wonderful!

    • Thanks so much Chara!! Deciding whether to share your health concerns is definitely always a tough decision, but there are benefits. I’m glad that I was able to convince you to be a little bit more open.

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