EDS Awareness day 22

Day 22 – Your Advice For Someone Newly Diagnosed

Understanding complex conditions such as EDS and HSD can feel overwhelming, especially for the newly diagnosed. For me, it was a mix of being overwhelmed by all the information and a rushing feeling of everything in life finally making sense. 

The relief was refreshing and washed over me like a wave of knowledge and power. I had a name for something that ailed me. It wasn't depression or anxiety and it was most definitely not all in my head as I had heard from several doctors. After almost 40 years of unexplained pain and injuries that just made no sense. I finally had answers. Part of me really wanted to go back to all the dismissive doctors and specialists and tell them what was really going on. I wanted to advise them to spend some time learning about this condition since they so easily disregarded all of my concerns.

The overwhelming feelings took over later with the realization that while I did in fact have a name for what was going on, It still had no cure. Many Doctors have still never heard of it or even worse some don't believe it is a real condition. 

I am here to tell you and them this is very real. 

With EDS being a genetic condition, I then had to consider my children. Did I pass this on to them? Could they be struggling the same way I did? That is where the overwhelm sat for a while. There was grieving, there was self-pity then there was frustration. 

This frustration led me to take action and help get the word out so others don't have to wait as long as I did for a diagnosis. So advancements can be made to better diagnose and manage symptoms. To keep patients from getting worse from overusing their bodies at a young age causing great harm later. We need more doctors and nurses to see us and hear us and take action to help us live better more fulfilling lives.

Over time, while living with EDS or HSD you will learn more things that can help you develop strategies to tackle your health – and life. I know I’m a broken record but No two zebras are alike and strategies that work for one may not work for another. Trial and error is how zebras roll. 

Join us on our Facebook group and tell us what is one thing you now know or understand that has had the most significant impact on your EDS or HSD journey? What would you tell those who are newly diagnosed and struggling to understand? 


I see you…

I hear you…

And I am so glad you are here ❤️

©Thecrackedzebra 2023. Unauthorized use and or duplication of this material without express and written permission from this site's author is strictly prohibited. Excerpts and links may be used, provided full and clear credit is given to The Cracked Zebra with appropriate and specific direction to the original content.

Comments

Post a Comment

Popular posts from this blog

A different kind of mourning

Image
Have you ever stopped to think about how people who get into an accident are given time to mourn their losses yet people who are diagnosed with a genetic condition or other health ailment are usually not.  This baffles me.....  Getting into an accident and losing abilities is hard.  I know people who have been perfectly healthy one day, get in an accident, and never walk again.  This is tragic!  They spent months in the hospital. Even more months in rehab all the while working with a therapist to help their mental state and dealing with such a profound loss. They were loved on, held, and supported by nurses and social workers ready to help them along the way and comfort them for as long as they needed. They were given room to grieve, as well as the tools and support they needed to get through this tragic ordeal.  My heart broke for these individuals in their time of struggle and I loved the way their communities rallied around them to ensure they knew they were not traversing this road
Read more

See something, Say something

Image
  See something...say something... "See something, say something" is a phrase we have all heard. It is an important mantra that encourages people to report any suspicious activities or behaviors that they may observe. It's all about promoting safety and vigilance  in our communities. If you ever notice something that doesn't seem right, whether it is an unattended bag, suspicious behavior, or anything out of the ordinary, don't hesitate to report it to the authorities. They are trained to handle these sorts of situations and determine if further action is needed. This is excellent advice! Unfortunately, it also promotes people being skeptical of one another. Looking at other people thinking they may be up to something, even when they may have had the purest of intentions. Of course, if you see something suspicious say something but what if we could do more with it? I think it's time to change things up a bit. What if See something, say something could also ref
Read more

Happy new year a couple weeks late

Image
New year, new you... Right? How about maybe we try something . . . a little different this year.  Maybe this year can be the year of self-love.  The year we finally recognize the things we accomplish every day. Even if it is just a day of rest. I don't know about you but I have spent most of my life being told what to do, what to think, how to be....with a body that just wont cooperate. So many rules, so many expectations.... I want this year to be different! This year lets parctice  Here are some suggestions to try to be just a little kinder to yourself this year... 1. Practice self-care! Prioritize activities that promote your physical, mental, and emotional well-being. This can include regular exercise your body can handle, eating as healthy as you can each day, and getting the amount of sleep YOU need. Make sure you are taking time to engage in activities you enjoy and don't steal all your energy. Things that bring you joy and relaxation. 2. Set Boundaries! Learn to say no
Read more