As an EDS-Warrior and MCAS-SurThriver, author Sonya Zappone, RYT aims to be a light in the darkness to those suffering with these two, rare, complex syndromes. She seeks to approach EDS (Ehlers-Danlos Syndrome) from an educated, empowered, and compassionate view-point. She believes that getting support and using wisdom can help those suffering to lead fuller lives with hope, happiness and joy.
AVAILABLE AT AMAZON:
EDS Survival Guide: 5 Keys to Thriving with Ehlers-Danlos Syndrome
U.S. KINDLE: https://www.amazon.com/dp/B09JVVFT6X
U.S. PAPERBACK: https://www.amazon.com/dp/B09KN9YMYQ
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To the Newly Diagnosed EDS-Warrior
Dear Newly Diagnosed Ehlers-Danlos Syndrome (EDS) Warrior,
You are on a journey.
Welcome to the world of invisible, (and sometimes very visible) rare, connective-tissue disorders. You are not alone! You may be relieved to finally get a diagnosis, or absolutely horrified to find out that there’s something seriously wrong at the genetic-level causing most of your problems. You might be in shock and/or disbelief. On the other hand, you may be overjoyed/relieved to finally have an answer 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! That’s normal and natural. 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, EDS Survival Guide: 5 Keys to Thriving with Ehlers-Danlos Syndrome —which is available at Amazon. 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!
(Read: 25 Powerful Life Tips for Living with EDS – BLOG)
Right now, you may feel broken, defective, and/or damaged. You may start listing your limitations and mourning the loss of dreams that will now have to go unrealized. However, I am here to testify that you can not only survive with EDS, but also thrive. There are strategies, tools, accommodations, and game-plans you can adopt to make your life the best it can be—even with EDS. Learn my “5 Keys to Thriving with EDS” in my book (mentioned above). Be sure to find key #6 to thriving with EDS, “Adapt” on my blog. By learning to adapt to your health condition, you can–and–will make it!
While at first you may cringe from being named a “person with EDS,” there will come a day that you are proud to be an “EDS Sur-Thriver.” 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. You might ask yourself, “Do they even need to know?” Or, you may want to let people know, but you don’t want to see the looks of pity in their eyes. Or, you may not feel ready to answer their questions that you, yourself, don’t have the answer to yet (and neither does science). You will probably experience an entire range of emotions from sadness, anger, rage, despair, and hopelessness. But try to relax and know that you can and will circle back to hope again! At least now you know what’s going on with you! If you’re feeling all of these emotions, that’s okay! Be sure to get support and someone safe to vent and share to. (NOTE: parents and partners may not be the best at just listening and giving you space to feel big emotions. So, I encourage and recommend that you seek a therapist, coach, counselor, mentor or other confidential support-person for this much-needed release of emotions and processing pain or feelings.)
With this new diagnosis, 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 Cranio-Cervical Instability (CCI) or Postural Orthostatic Tachycardia Syndrome (POTS.) Yup, all these things tend to co-exist and be comorbidities—a term I do not personally like to use. You will probably be mentally connecting all the dots of your past. This is all a normal process of processing your new reality. It can be a zigzag line or maybe more like stepping-up a spiral staircase where you go around and round but gain new insight on your issues. You might get stuck in your mind with new concerns, worries, and fears, but each time, you can see your EDS from a higher perspective—because even zigzag lines move us forward!
I want to remind you that you are still the same person. Even though you have a label and a diagnosis, you are the same person you were before your diagnosis. Now, you may just have to build up a new version of yourself that is strong, wise, and resilient. You may need to create a new vision for yourself enduring this. It’s wise to use the diagnosis of “EDS” to help you make good decisions for your health and to now modify your life to fit your circumstances. You will have to make room in your life for being you! Afterall, you just got confirmation that you are indeed unique!
Heads-up: Your life may not go according to plan now, but that’s okay. Life never does anyway! Whether you have EDS or not, life is full of surprises and “twists and turns.” You can learn to navigate and make new plans. There’s no right or wrong way to deal with EDS since all of us “zebras” are all so different. However, there are well-known contraindications for EDS to keep in mind that could be potentially harmful. Research these and know why they could be detrimental to you—but don’t let them terrify you. I find that a little healthy fear is good, but terror is not. You may discover that many of us (EDSers) have been injured in sports, gymnastics, advanced yoga poses, chiropractor’s offices, medical offices, and/or childbirth. 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 and knowing which medications to avoid (like fluoroquinolone antibiotics that can specifically cause more damage to connective tissues and tendons), you can potentially spare yourself pain, injury, medical trauma and harm. Knowledge is power. Educate yourself. Well-thought-out decisions and healthy choices can help you go far. Where possible try to use natural solutions. We can become very medically complex so try to keep things simple. Sometimes, less is more. It’s okay to get second opinions on surgery and seek out naturopath or holistic healing doctors. We have rights and can exercise options. There’s even a whole, new, emerging science of epigenetics where an organism can turn on and off certain genes. You may be curious and want to look into that. Bottom line is … we can find ways to reduce or eliminate stress for optimal health.
But, go as fast or as slow in learning this vital information. Find your own pace. You may want to check to see if you have Mast Cell Activation Syndrome (MCAS) underneath your EDS which can make lax ligament matters worse. Sometimes, in some situations, MCAS managed with antihistamines can help EDS sufferers. Always keep in mind that while we are all eerily similar, we are all very unique. What works for one of us, may or may not work for another. Be cautious. Be careful. Be smart. Respect your body. But, still live your life! Please know that you won’t be able to learn everything all at once. So, take breaks if you find yourself getting 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. Remember that we didn’t cause this or consciously choose this disorder; this was the hand of cards we were dealt. Take 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 personal growth and goals. If you haven’t found out yet, there are numerous types of EDS and counting—as medical research discovers new variations (it seems) each year. This means that there are many of us out there, just like you. We are doctors ourselves, nurses, authors, former Miss Americas, accomplished singer-songwriters, movie-stars, entertainers, leaders, mothers and more. We have gifts and talents to share—just like anyone else. And many of us live out loud! It takes courage, but we do it. We step outside of our comfort zone and personal struggles for others. We speak out against injustice, advocate and live our lives with integrity, authenticity, and pursue our passions.
As you survive EDS, you’ll find strength and courage that 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. You will build it and grow into it. You can go from surviving to thriving. You can overcome fears and move forward embracing a new life—with EDS. You are stronger than you think. Remember that you are alive, you are a fighter, and if you are reading this, you, too, are an EDS-Warrior!
It’s okay to give yourself the necessary time to grieve. You might feel some (or a lot) of self-pity. I caution you not to fall into the “dark pit” of self-pity. Stay away from the edge of that pit by writing “Gratitude Lists.” There’s a lot to be thankful for in the 21rst Century with modern conveniences and modern medicine. I am a big proponent of journaling our thankfulness as a powerful way to shift a tired, weary, worried, worn-out brain into better thoughts. It may be helpful to keep in mind that others are being diagnosed with terminal cancer and have only 3 months to live. We, on the other hand, have a life to preserve and cherish—-even if all we can do is listen to music or capture one precious moment of joy with a loved one in our day.
Yes, you will likely feel the loss of all that “could have been,” but from the debris of those dreams will be the soil for the seeds of innovation that you can sow. You will get more creative as you make your own solutions to the problems you face. Do what you can. Stay busy but allow for lots of down-time. Some of us write, draw, paint, dance, listen to music, make music, sell hand-crafted jewelry or knit scarves. Many of us find outlets for our ideas, and genius that fill us and make us feel connected to our community. We find ways to serve even if it’s to “life out loud” and raise awareness. We even volunteer our precious time.
We know that you may have days of terrible, horrific pain. Or, you may have days when you can’t get out of bed because of EDS. There may be days when you feel like 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 unwanted (sometimes unnerving and embarrassing) trips to the Emergency Department and hospital stays or visits you didn’t expect. You may have more medical bills than are fair—or expected. You may have to give up some sports and adopt new/safer ones or find different handicap versions of it. 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 might meet a gruff, insincere, uncaring doctor or nurse who lacks empathy. 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. Have hope that there will be easier days to balance out the hard ones. You might come across that one kind physician who shows you that they do care about what you are going through. Cherish them. Send them a “Thank You” email/note/card. Let them know what they mean to you and how their care/compassion affected your day.
You may get frustrated with needing so much help. Or frustrated with not being able to find adequate reliable help. You may want to yell at people closest to you, or just cry and mope around all day. Your emotional state can fluctuate/range from elation from the freedom of finally having a diagnosis, to severe anxiety, to deep depression. Give yourself space 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 power. You have the power of choice. While EDS may feel like a life-sentence, it is not a death-sentence! You still can breathe and love—and your heart is still beating. Your spirit will be as strong as your will to live. You may have to seek therapy and find a good physical therapist to help you keep going. Don’t feel down about needing this; that’s what they are for. It’s their job. Keep in mind that their purpose in life is to help people like us. We are one of the reasons they have jobs and meaning in life! Learn to see things in this positive way and squash your pessimism if it creeps up. Discover sources of inspiration and positive affirmations. Find what motivates you or find motivating support-people for your journey.
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 and great in your life. Your strength can become a light of hope for others. Just think—seeing you survive might 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 because there is!
FYI: When you have accepted your diagnosis of EDS, you will suffer less. Sometimes we suffer over our suffering, which just adds more pain to our problems. You will have to be kind to yourself and offer yourself lots of self-compassion for your struggles. It can be challenging both mentally and physically. You will have to become gentle with yourself and give yourself the right to practice self-care over taking care of others. Please realize that you are not broken. You might be different, but you are not junk. Realize that you are a warrior, a fighter, and an EDS-survivor. If you need a helpful guide to move you through the stages toward acceptance, you can learn my 5 Keys to Thriving with EDS, in my book available on Amazon.
With EDS, you can learn to fight but not get hurt. This is done by strategizing, planning, using tools, and using wisdom. You can live with EDS…not because you have to, but because you want to live. You can learn to stand up every day, face EDS, say “I am an EDS Sur-Thriver!” Applaud yourself for holding it all together—as best you can. For us, this is no small feat. Celebrate any accomplishments or achievements no matter how big or small. We are up against so much, but also able to do many things that we can feel proud of. Find your purpose in your pain. Turn your woe into wisdom. Figure out how to spin the straw of your life into gold. Create positive, uplifting self-talk. Because in most cases, we are as happy as we make our minds up to be! Remember there is an exception to every rule and that miracles do happen.
Congratulations! You are an EDS-Warrior, now.
Keep calm, carry on, and most importantly, connect with others!
Remember always, that you are not alone!
Sincerely,
Your Sister Zebra,
Sonya Zappone, RYT, CTACC, C.MI.,C.LAC.
Mother, EDS Sur-Thriver, poet, Kripalu-trained yoga teacher, certified life coach and independent author
Book available at Amazon:
EDS Survival Guide: 5 Keys to Thriving with Ehlers-Danlos Syndrome
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