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To the Newly Diagnosed Ehlers-Danlos Syndrome Warrior

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Dear Newly Diagnosed Ehlers-Danlos syndrome (EDS) Warrior,

Welcome to my world of invisible (and sometimes visible) rare connective tissue disorders. You are not alone! You may be relieved to finally get a diagnosis, or horrified to find out that there’s something major at the genetic level causing most of your problems. You may be in shock and disbelief. On the other hand, you may be overjoyed to finally have answers to all your medical mysteries. You will likely go through a range of emotions over the next couple of days, weeks, and months — even years! It can take a while for things to sink in and for anxiety and worry to settle down after a diagnosis. I found that there were many stages and levels to processing my EDS diagnosis. That’s why I took the time to write a survival guide. When I got my diagnosis, there was no program for hope and healing for me to follow. So, I made my own. You can too!

• What Is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Right now, you may feel “broken,” “defective,” and “damaged.” You may start listing your limitations and mourning the loss of dreams that may now have to go unrealized. However, I am here to testify that you can not only survive with EDS, but also thrive. There are smart strategies, tools, and game plans you can adopt to make your life the best it can be. By adapting to your health condition, you can and will make it!

You might mentally go through a list of family, friends, and acquaintances and weigh the pros and cons of letting them know about your new diagnosis. Do they need to know? You may want to let people know, but you don’t want to see a pitying looks in their eyes — or have to answer questions that you don’t have the answer to (and neither does science yet). You may experience an entire range of emotions from sadness, to anger, to rage, to despair, to hopelessness, and back again to hope. At least you know what’s going on with you! You’re feeling emotions and that’s OK!

Your mind might start racing. Most likely, you will have many thoughts about what EDS means for you and your future. It can make you dizzy, even if you aren’t normally affected by vertigo with EDS and craniocervical instability. You will probably connect all the dots of your past. This is all normal to be going through. Processing this new reality can be a zigzag line or like stepping up a spiral staircase. You might go around and around in your mind with new concerns, worries, and fears. But each time you see your EDS from a higher perspective, and even zigzag lines move forward.

I want to remind you that you are still the same person. Even though you have a label and a diagnosis, you didn’t change or go away. You may just have to build up a new version of yourself that is strong, wise, and resilient. You can use the diagnosis of EDS to help you make good decisions for your health and modify your life to fit your circumstances. You will have to make room in your life for being you. After all, you just got confirmation that you are indeed unique!

Your life may not go according to plan now, but that’s OK. Life never does anyway, whether you have EDS or not. You can make new plans. There’s no right way or wrong way to deal with EDS since all of us “zebras” are all so different. However, there are well-known contraindications to keep in mind that could be potentially harmful. Research these and know why they could be detrimental, but don’t let them terrify you. A little healthy fear is good; terror is not. You may discover that many of us EDSers have been injured in advanced yoga poses, chiropractor’s offices, and childbirth. This you will want to safeguard yourself against unnecessary harm by being educated and having a knowledgeable medical team who supports and understands EDS. By identifying the potential threats to your health, you can spare yourself pain, injury, and medical trauma by knowing which medications to avoid like fluoroquinolone antibiotics that can specifically cause more damage to connective tissues. Go as fast or as slow learning this vital information. Be cautious. Be careful. Be smart. Respect your body. And still live your life! You won’t be able to learn everything right away. Take breaks if you get overwhelmed.

As long as you continue to put one foot in front of the other (or wheel yourself day to day), you’re doing great! EDS is different for everyone, so there’s no need for comparisons to be made, no benchmarks, no set-in-stone goals. Don’t beat yourself up mentally by judging yourself harshly. We didn’t cause this; this was the hand of cards we were dealt. There is the opportunity to create your own personal goals that are attainable and reachable for your version/type of EDS. Even though you have EDS, there is still room for growth and goals. If you haven’t found out yet, there are 14 types of EDS and counting as medical research discovers new variations each year. This means that there are many of us out there, just like you.

As you live with EDS, you’ll find strength and courage you never knew you had. This is your chance to go from ordinary to extraordinary. From the ashes of your old life, a new life will be born, and you will build it, bit by mindful bit. You can go from surviving to thriving by overcoming fears and moving forward embracing a new life with EDS because you are stronger than you think. You are alive, you are a fighter, and if you are reading this, you are an EDS warrior!

It’s OK to give yourself the necessary time to grieve. You might feel some (or a lot) of self-pity. I just caution you not to fall into the dark pit of self-pity. One way to help stay away from the edge is by using/writing “gratitude lists.” I often suggest journaling thankfulness as a powerful way to shift a tired, weary, worried, worn-out brain into better thoughts and energy. We have a life to preserve and cherish, even if all we can do is listen to music and capture one precious moment of joy in our week. You may feel the loss of what “could have been,” but the debris of those dreams will be the soil for the seeds of innovation. You can get more creative as you make your own solutions to the problems you face.

You may have days of terrible pain. You may have days when you can’t get out of bed because of EDS. There may be days when you can’t cope with being around people. There may be days when your body won’t move the way it used to, or the way you want it to, and you are embarrassed. You may have many trips to the emergency department and visits, or hospital stays you didn’t expect. You may have more medical bills than are fair. You may have to give up some sports and adopt new/safer ones. You may have days of being overwhelmed by medical jargon. You may have days of inconclusive tests. You may have days where the test results are scary. You may have days of frustration with doctors or medical professionals who don’t know about EDS or its comorbidities and complexities. But remember, these are just days. We have other days to balance out the hard ones. You might come across that one empathetic physician who shows you that they do care about what you are going through. Cherish them. Send them a “Thank You” card.

You may get frustrated with having to have so much help, or no help at all. You may want to yell at people closest to you, or just cry and mope all day. Your state can range from severe anxiety to deep depression. You will have to process your new reality in the best way you can. It’s not what you have that defines you, it’s what you do with what you have. You still have the power of choice. You still can breathe, and your heart is still beating. Your spirit will be as strong as your will to live. You may have to get therapy and a physical therapist to help you keep going. Try not to feel down about this; that’s what they are for. It’s their job. Their purpose is to help people like us. We are one of the reasons they have jobs and meaning in life! Try seeing things this way.

EDS can take away many things that you once enjoyed, but it can’t take away the important things. You will need to remind yourself of all that is good in your life. Your strength can become a light of hope for others. Seeing you survive may encourage another younger family member who may have inherited this condition too. We can lead a good life by example. We can give them hope that there is happiness with EDS.

FYI: When you have accepted your diagnosis of EDS, in my experience, you will struggle less. Sometimes we suffer over our suffering, which just adds more pain to our problems. Be kind to yourself and offer yourself lots of compassion for your struggles, both mentally and physically. Be gentle with yourself and give yourself the right to practice self-care over taking care of others. You are not broken. You are a warrior, a fighter, and an EDS survivor.

With EDS, you can learn to fight and not get hurt. This is done by strategizing, planning, and using wisdom. You can live with EDS, not because you have to, but because you want to. You can learn to stand up every day, face EDS, say “I am an EDS survivor and thriver!”

Congratulations, you are an EDS warrior. Keep calm, carry on, and most importantly, connect with others! Remember that you are not alone!

Learn more about Sonya on her website.

Originally published: February 22, 2022
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