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4 Tips for Managing a Career With a Genetic Disorder

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Living with a genetic disorder can sure come with a hefty set of challenges. In 2008, when I was 24 and preparing for my future as a seamstress and artist, I was diagnosed with DiGeorge syndrome also known as 22Q11.2 deletion syndrome. It’s a result of a microdeletion of genes from the twenty-second chromosome, right next door to Down syndrome. Having a genetic disorder can feel overwhelming, and since I didn’t find out about it until later in life, I needed to compromise with myself.

I had dreams of becoming a full-time author with a women’s clothing alterations business on the side. Any kind of diagnosis can easily scare us out of situations and even opportunities. But I didn’t want to live like that. Those who know me know that I don’t allow my health to dictate my life. If you have disabilities and health issues, the idea of having a career might feel impossible. When I was diagnosed with chronic pain and fibromyalgia in 2017, it especially felt impossible. I contemplated giving up many things — sewing, painting, writing, traveling, and my life.

Eight months ago, in the midst of a spiraling depression and bed-ridden with pain, I almost closed my business entirely and quit everything. People with 22Q and other conditions were emailing me and begging me not to give up. Their encouragement and success stories inspired me to keep going. So I launched my tailoring and alterations business on Google.

Today I have hundreds of customers and am writing full-time for several national journals. And yes, I still have to manage my health. I still travel, paint, write and go to medical conferences delivering motivational speeches. I am eight months into this tailoring and alterations business and love every second of it. I want to share my four ultimate success tips for managing a career with a genetic disorder, so here they are:

1. Schedule a weekday and a weekend day to get organized.

As my own boss, I can adjust my schedule how I want. I take the day off Sunday and shorten my hours on Friday. The end of the week and the start of the week are most important. On Friday, I clean up, get organized, do my bookkeeping, go through purchases I made during the week for projects, and write articles. On Sundays I relax, do activities for fun (that I don’t promote) and clean.

2. Establish exercise routines.

To manage my chronic pain and fatigue, I exercise two or three times a day if I have a window to do so. In the morning I stretch for 30 minutes and use the Styrofoam roller, which has been a life-saver! If you work on flexibility on a regular basis, in my experience it will for sure make a difference for pain. In the afternoon, I’ll go for a walk outside or swim. In the evening I do yoga. I very rarely get flare-ups now because of this physical therapy routine.

3. Spend time in nature when you can.

Being mindful and engaging in mind-calming activities can increase productivity and inspire you. Nature is my muse and a source for easing troublesome thoughts. I also have depression and anxiety, but a balanced schedule works wonders for your mental health. With a genetic disorder, it can feel as though your whole life is a disorderly mess. A few minutes in nature melts my stress away and gets me excited about my creative work.

4. An evening routine will set you up for success.

At night, I have a structure just like during the day. First I journal and record what I’ve accomplished that day and what still needs attention. This type of journaling is excellent if you have depression and anxiety and are needlessly hard on yourself. You may find journaling like this changes your perspective about how much you’re already accomplishing. I also do yoga right before bed so I don’t have pain during the night.

If you want to have a business, work a job and do more with your life, you must first believe you can. Sometimes we need to change our mindset and views about ourselves and capabilities. How you think and feel about yourself makes all the difference in your world as well as for others. Don’t let your health or a diagnosis prevent you from living the life you deserve.

Originally published: July 30, 2018
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