This summer I was finally diagnosed with Ehlers Danlos hypermobility type. It goes by some other names like hEDS, EDS type 3, and other formats of these names, but they all mean the same thing. In my journey to finally get diagnosed I have also been diagnosed with numerous other conditions along the way - asthma, migraines, Raynaud's Syndrome, a ventricular trigeminy, tachycardia, tricuspid and pulmonic valve insufficiency, patellofemoral pain syndrome, hip dysplasia, dysautomnia - suspecting of POTS, IBS, I have a discoid meniscus in my left knee, serotonin syndrome (which was super scary, because of an SNRI I was having all kinds of neurological problems and they thought I was having seizures), I have had costochondritis twice now, have to varying degrees struggled with numerous psychological conditions, and have more acutely dealt with numerous other pieces. I have had many sprains, strains, dislocations, but never broken a bone - the few times I've come close, I was told I didn't since my joints had so much mobility in directions that they shouldn't. The struggles and diagnoses have all come at varying times, some my family and I were aware of before the formal diagnosis just from looking at family history, but they are all things I will have to deal with for the rest of my life.
Though we didn't know what the formal diagnosis was of hEDS, it is in the vast majority of my family - immediate and extended. We suspect it comes from the Norwegian side that 5 generations removed were members of the national circus (fun fact). As an dominant trait though, we have seen many characteristics in the family for those like myself, my mother, and two of my brothers who have been diagnosed, and the dozens of relatives that have these same struggles undiagnosed from lack of knowledge about the condition until my diagnosis and in doctors that haven't put together the numerous traits that characterize this condition. One of my cousins with the condition had to wear knee and ankle braces until the age of 2 to ensure that her bones would grow properly since her joints were so unstable. I have had to reshape my life in athletics, because I have faced uncommon injuries, difficult rehabilitation, and joints that can't do things like whip kick for swim team properly. I have had to change day to day activities every year from about September to March since the combination of having a very low blood pressure, Raynaud's syndrome, and dysautomnia don't mix well. I struggle with things like when I drink a pop out of a vending machine, if the air conditioning is on, the drink is usually cold enough my hands and feet will turn purple and I will be uncontrollably shaking for anywhere from 20 minutes to 2 hours. I had an acute problem - a diagnosis of thoracic outlet syndrome in my left shoulder that put me in the ER once. I had lost nervous connection and blood flow to and from my left arm. I could still move the limb, could not feel it, and was watching my arm slowly turn more and more blue from the lack of new blood flowing to the limb. It was one of the scariest things I have ever seen, and the ER doctors only recognized the condition, because of the blue marking the lack of blood flow. It is such an uncommon problem though that my uncle on my dad's side (the side without EDS), had told us that it was an impossible diagnosis, that the doctor must have been wrong. Upon reading for 20 minutes online about the condition with EDS in a Google search, hypermobile patients are vastly more likely to have this problem because of the nature of the joints. This whole ordeal came about from while I was weightlifting for leg day, my shoulder popped out of place while I was picking up the bar. There have been dozens of times with hypermobile joints and very mundane or common activities that have caused me very lasting problems.
I know that EDS may not be something very exciting or traumatic to most, those with the diagnosis can and most often look perfectly normal and healthy, but it doesn't mean there aren't problems day to day. One of the most common problems associated with all types of EDS is chronic pain. My friends think I am crazy that I slept through an hour and thirty minutes of an hour and fourty minute session it took for my longest tattoo, but that pain was nothing compared to my normal threshold of what manageable pain is. I have friends that also struggle with anxiety, but they don't understand the extra panic associated with anxiety and the chest pain of panic attacks after having been diagnosed with numerous cardiac conditions, costochondritis which is also nicknamed "fake heart attacks", and having a heart rate of 160-175 when I'm doing a warm up, 180-210 when I'm exercising at a moderate to heavy level. If hearing my story and just a little bit about EDS, the one thing I would hope anyone could take away, is that when someone says they aren't quite up to doing that HIIT workout, for going out to a movie that night, when a young "healthy" looking person doesn't give up their seat on the subway - that you be a little more forgiving and understanding that there is more to their story than you know. They might need the break from standing just as badly as a pregnant woman might.
There's definitely been a lot of things I have learned from fighting injuries and day to day problems that have come to my life with EDS. I personally like the higher pain tolerance, but I know many don't since it also has made it a lot harder to get doctors to understand the severity of injuries and mental struggles when I don't emote the what is happening. I have learned a lot about anatomy, oh my gosh I have learned so much it's a little crazy. I like to think at least that I am more understanding or at least empathetic of other people's struggles after seeing first hand how much there can be going on that you can't see and can't relate to no matter how much you try. Over the years I have learned to love myself for all the good, the bad, the beautiful, and ugly. I won't lie that it was hard, but I got there and even any one person I can help to learn to love themselves too, it is worth the world to me to do so. I have also been able to help a dozen of my cousins, my mom, multiple of my aunts, my grandmother, my great aunts, numerous second cousins and further yet extended relatives that all have been struggling with various pieces of this condition and now have resources for how to manage and prevent complications.
My biggest piece of advice would be to be vocal as soon as you are ready. Talk to your doctors - ask questions, tell everyone in your care team, don't be afraid to ask for information. Talk to other people with the condition or even similar conditions, online, in person, there are support networks all over the place. Being vocal helps you know and process your diagnosed condition, it will help those around you be aware of whats happening, and it will help with the awareness in the community.