My Life with Ehlers-Danlos Syndrome
I've reworked the beginning of this several times, I really don't know how to begin to broach such a huge subject. I am going to try to tell my story with as much transparency as possible. It's a goal in my life to be as honest and open as I can.
I am sick. Three words I hate, but it's the truth. I live every day of my life ill. I have what is called Ehlers-Danlos syndrome. Ehlers-Danlos syndrome (EDS) is a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. So pretty much every part of my body is affected. On an average day I deal with chronic widespread pain varying from annoying to unbearable, extreme fatigue, insomnia due to pain, joint dislocations, GI issues, nausea, muscle weakness, and so much more that if I went on you would either stop reading or fall asleep. This isn't really about my specific illness though. It's about how I run a business while managing my illness.
Few of my clients know that I'm "sick." It has always been a fear that if new clients knew they wouldn't want to hire me. They would fear that I wouldn't be able to fulfill their needs, that I would some how be less than, or that I'm somehow defective and they would choose someone else. When in reality I push harder than most to make sure my clients are happy. In the three years since I have been in business I have never once missed a session due to my EDS. I have showed up to sessions on the same day that I have dislocated a knee, I have shown up with a dislocated rib, I have dislocated my finger during a session and not blinked an eye. The thing is, is that EDS has turned me into a fighter. In a strange way my weakness has made me strong. It took 26 years of symptoms and sickness to get a diagnosis. I became a warrior. I learned to fight. It has given me an amazing work ethic. I show up, no matter what I feel like, no matter how tired I am, no matter how bad my day has been I show up. Unless I have something that is contagious and I risk getting other people sick I am there. Strangely being "sick" has made me more reliable and dependable. I don't ever want people to think that I am incapable because of the genetic hand that I have been dealt.
I have to make decisions every day on what I can do. I may have energy to work but not do laundry. I may have the ability to keep my children alive but not go outside that day. There are someday's I have to decide between playing on the floor with the boys or to spend hours editing because I can only physically do one that day. I simply don't have it in me to do all of the things that a healthy person can do easily. It has taught me two things. It has taught me to prioritize and how to be selective. I have learned where my priorities lie and next to my family my business is the second most important thing to me. I know people are always anxious waiting to get pictures so it is always a top priority for me to make sure I have the physical capability and energy to get sessions completed and sent out on time if not early. Not everyone will agree with me that being selective in business is a good thing but for me it is. Learning to say no has been one of the most powerful things that I have learned in not only my business but my life. Unfortunately I have to say no frequently these days. But this has translated in me being selective in the type of photography that I am doing which has helped me specialize and grow in one certain field. I don't shoot weddings, I don't do senior sessions, I deal with bellies, babies, and families and I love it.
When I got my diagnosis I became a more passionate and positive person. Weird right? I have had symptoms most of my life and it took 27 years for me to get a diagnosis and once I did my life changed for the better. While I have physically declined I am a happier person. There are a long list of reasons why but the biggest is because when life gives you lemons you make lemonade. I know, I know, it's cheesy but it's true. We choose our happiness. We are the only ones responsible for how we feel. I choose to be happy. Because I choose to be happy and I have limited energy and strength I have found that it pushed me to pursue my passions and to go after my dreams. Energy is a valuable and limited resource in this body of mine. My time is precious and valuable I will not waste my time and energy on things that I am not passionate about.
So maybe you are wondering why now? Why am I willing to let all of my current and potential clients know now. Well there are two reasons. The first being that May is EDS awareness month. This is the one time of year I blast EDS information online. The second and most important reason is this, If you are sick, if you are unwell, if you feel broken, you can still run a business. You can even be a great business person. You are still allowed to have dreams and to at least try to follow them, there are ways. You will have to fight for it and work harder than most. You may have to do things a little differently than everyone else. You may have to prioritize differently than others but you can do it. You will really learn where your priorities lie, you have to. You must be decisive. You will have to learn to say no, but you can do it.
Just as I struggled to begin this I am struggling to finish this. So I will end with this. Don't let your circumstances define you as a business person or a person in general.
If you want to learn more about EDS you can go here. You can also find info here or even here.
Have a blessed week.-Rachael
I am a mom and a photographer. My love of motherhood led me to photograph all things from bellies to birth and beyond.