When you go through a health crisis or even have to face going on disability (either through your employer or through social security), most of the time your life is turned upside down; focusing on your health is now all-consuming. It is hard to imagine going back to work, even if you find some sort of stability, because your days are spent trying not to spiral down again. This is what I call The EDS Spiral. The EDS Spiral is my own term, based on my experiences of going through the ups and downs of living with numerous chronic health conditions and how this roller coaster ride affects my mental, physical and emotional health. The same phenomenon has occurred with countless people, so much so that research on Ehlers-Danlos Syndrome is now regularly discussing it.
Still, how do you climb out of the spiral, find a way to go back to work, and have a successful career, if that is your goal? Below, I have listed the top 13 things that I have found are essential to having a successful career while living with a chronic illness.
1. Taking care of my whole self first, no matter what – physically, mentally, emotionally and spiritually. For me, proper nutrition and exercise daily is crucial, and a way of life. It’s non-negotiable. Additionally, proper exercise and nutrition helps me meet the needs of taking care of the mental, emotional and spiritual aspects of my health.
2. Personal Growth – Personal growth is essential to me being the best person I can be (see number 10). By having a consistent willingness to think outside of the box and view things from a different perspective, I cultivate my own sense of optimism and possibility. Being my best self, affects my overall health and wellbeing, which also greatly impacts my symptoms and issues with EDS.
3. Learn to trust again – I tend to think that people have a genuine desire to be honest, trustworthy and will do unto you as you have done for them. However, I have found that sometimes those who you are closest to and do love you, can really hurt you. It is very hard to trust anyone, when someone closest to you has hurt you deeply. Finding a way to let go of the pain and trust again is therapeutic and healing.
4. Commitment – this has to do with reliability & accountability to those who are depending on you, including yourself.
5. Look from the outside in – I try to focus on being present in the moment. I try to view myself from an outside perspective, especially with my kids, because even though our intentions may be good, and our actions and words seem justified, our mannerisms, the words we use, and our overall demeanor can give off a completely different feeling. We all deal with our own internal chaos, especially those of us with chronic health issues or pain. By checking-in with how that may or may not be affecting others, we can ensure that our impact today matches our intentions in the long run.
6. Always telling the truth and not stretching the truth – honesty and integrity are crucial to building trusting relationships whether in business, friendship, marriage, or with family. And why stretch the truth either, even just a little? Stretching the truth just a smidge, still damages trust in relationships.
7. Controlling my emotions & reactions amidst a tornado that is happening around me – Some of the best advice ever given to me was to learn to control my own reactions, despite the reactions of those around me. No one makes you do anything or react a certain way. Each one of us owns our own actions and reactions no matter what. It is easy with a chronic condition to try to excuse or justify behavior, but by being accountable, we become more reliable for others, and have greater control of our selves.
8. Not caring if people not like me or what I do – Haters are gonna hate and opinions are like b_tt holes (proper medical term – the anus), everyone’s got one. Personally, I am more affected by the opinions of my family versus strangers. Unfortunately, there are some incredibly vindictive and malicious people in this world. The more visibility you have, the more opportunity to cross paths with different people and you become more open to a whole lot of nonsense.
9. Facing fears and being willing to take calculated risks – fear can be paralyzing, but taking calculated risks is the only way to fulfill your aspirations. I am far from a risk taker or thrill seeker by nature, but I have pushed myself to take small baby steps with things outside of my comfort zone.
10. Being ok with failure – I’ve learned to become quite comfortable with what many would consider failure. Failures are learning experiences for me. Most times, I have no idea what I’m supposed to learn from a failure or why life has put a certain challenge in my path, but changing my view on my failures has been freeing.
11. Learning to let go – Starts with being real with what is; for example, managing my OCD and accepting that I am very ADD, which means it’s hard to accept that I do not have control all the time. Letting go of things outside of my control, or accepting what is humanly possible in a give day, is very challenging.
12. Have at least one mental dump each day – I need to regularly mentally dump the long-list of things I need and want to do. Writing things down that are in my head at then end of the day, helps my productivity the next day. I also benefit by doing something mindless, and quiet. I need time to think, and covet my time alone. Learn to be ok with taking time for self-care.
13. Learn my true priorities on a given day or at a specific moment – Know what matters first: for me it is my health. Many times I have chosen a workout over housekeeping, because working out is way more important to my overall health and well-being, and productivity in business. And as long as I workout, I have the strength and the stamina long-term to keep up with the housework and keeping things organized.
14. Focus on what I CAN do vs. what I CAN’T – This goes for anything in life, such as things I want to get done each day, as well as pertains to relationship struggles. The cognitive effects from the whole shebang of issues that I deal with daily have proven pretty devastating. However, I’ve had to learn to focus on very small, immediate steps to get anything done. It does not matter that I am just not as fast as I would like, or used to be. There are countless times when I cannot immediately finish something I’ve started, because I just do not have the time. For someone who likes to finish what I’ve started, THIS is so hard. This is where focusing on what I can do each day versus what I cannot is imperative, as is number 20.
15. Find something that you like to do and is flexible (pun intended) – Sometimes a job is a means to an end and that is perfectly fine. I think flexibility is key here and if you like what you do, huge bonus. However, liking to work in general is great too, even if you do not like aspects of your job, but if it provides flexibility — priceless.
The idea of a physical spiral that also affects our mental and emotional health, all stemming from living with Ehlers-Danlos Syndrome and its comorbidities, can apply to any chronic health condition or disease. The only person who can really help each one of us climb out of the spiral, and go on to achieve our goals, is the person we face willingly in the mirror each day.