My story – Juliana
People always say “don’t let your illnesses control your life” and truth is, that’s much easier said than done. I’m sure many of us zebras know just how challenging it can be to balance “living” versus “existing”. Especially when it is a disease that controls every single aspect of your life and comes along with many other diseases. Every morning, I wake up with a sense of uncertainty. Will today be a good day, or will my symptoms flare up and have me stuck miserably in bed? This unpredictability makes it hard to plan anything, whether it’s a simple outing with friends or a significant life event like graduation. I often find myself caught between the desire to live a “normal” life and the necessity of accommodating my health conditions.
I have always been someone who has “weird” health problems, like random allergic reactions, nausea more than what was “normal,” tachycardia, chronic UTI’s, “growing pains” that never went away, injuries that never fully healed, and just simply being sick all the time. However, as a kid, none of it was too debilitating. Then, when I was 14, I started to develop worsening symptoms and symptoms of Dysautonomia. Like a lot of us have experienced, it took many many years, doctors, and lots of medical gaslighting before anyone was willing to listen. But finally at 17 I got diagnosed with Inappropriate Sinus Tachycardia (IST). Now, I am 20 years old and within the past 6 months, have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Hypermobile Ehlers Danlos Syndrome (hEDS). I’m currently waiting for test results to see if I also have Mast Cell Activation Syndrome (MCAS) and Median Arcuate Ligament Syndrome (MALS) or some kind of vascular compression.
During these years of the diagnosis process, I tried to ignore my symptoms in my “daily life.” I didn’t tell anyone what I was dealing with, and tried to carry on like I didn’t have these illnesses, especially at the beginning when I had no diagnosis due to the medical gaslighting I had faced. Now it’s years later, and I realized these things are always gonna be there in some way. Through this realization I have been upset, angry, scared, every emotion in the book. This led me to isolate myself and stop myself from doing anything “fun,” which caused so much anxiety and depression. I have now realized that, yes, these will always be there in some way, but that doesn’t mean I don’t deserve to have fun and experience the joys of life. It may be in a different way than what is “typical” because I do have to take these illnesses into consideration and do not want to push myself too hard, but I deserve the fun. Don’t get me wrong, I still have my days where I feel every emotion in the book and that is okay, but I’m finally at the point where I have accepted the hard truth that this is just my reality and the cards I was dealt. I saw someone say “live life despite” and that is exactly what I’m trying to do! Live life despite all the pain and struggling.
What has been the most important factor in learning to “live not just exist” has been finding people who understand. Of course, this has been difficult, because a lot of people don’t understand and do not care enough to try to, which is a hard pill to swallow. But, finding friends and people who are there for me on both my sickest days and my best days, and will accommodate towards my needs whenever we go places, has been life changing. I am forever grateful I have been lucky enough to find these people. It was definitely a process, I have lost many friendships and relationships since this all began. Oftentimes, “healthy” people don’t understand how someone can have so many symptoms at once, and continue on despite it all. But, truly if someone is one of “your people” they will make the effort to understand the reasons why you are this way. Why you may have days where you can’t get out of bed, why you have a specific diet, etc. They may not ever fully “get it” and I’m glad of that. Unless someone lives with these horrible conditions, they won’t. But, that doesn’t mean they can’t try and learn understanding.
Another big piece in balancing all this is understanding and accepting my limits. This acceptance is not about giving in or letting EDS & co-morbidities control my life, but rather about acknowledging my body’s signals and respecting them. Pushing myself beyond these limits often results in severe pain, extreme fatigue, and extended recovery times. I’ve learned that recognizing when to stop and rest is crucial for maintaining my overall well-being.
Don’t get me wrong, this is certainly a work in progress. This is especially hard when you have so many diseases working against each other. For instance, somedays salty foods cause tremendous GI issues for me, but they also help control my POTS symptoms. So it’s like, do I want to be dizzy and faint or do I want to be nauseous and doubled over in pain? It can be difficult to say the least.
When I first got sick, making plans far in advance gave me overwhelming anxiety. What if I’m passing out this day? What if I’m in pain and can hardly move? What if I’m throwing up? The list goes on and on and on. But, I have learned that I do like planning, I just need room for flexibility. Planning has now become an essential part of my life. I plan my days around my energy levels and symptoms, and allow for time to rest and recharge. Being adaptable means I can adjust my plans without feeling guilty or frustrated (this part is a work in progress as well). One thing specifically that has really helped, is my partner & I have a list of date ideas, and I ranked “energy levels” needed for that idea. So, each date I can assess what my body can or cannot handle. Things like this have helped tremendously.
Through all of this, one of the most difficult parts for me has been the mental side of these diseases. Honestly, sometimes the mental effects seem just as bad as the physical. I experience so much fear, sadness, and guilt because of these diseases. Especially, whenever I can’t work, have to cancel plans, etc because of them, it can be hard to not focus my attention to how horrible these are. On a brighter note though, something that has helped me live life despite, has been to focus on and recognize my resilience. I’m sure anyone who has these diseases, or similar ones can relate to how difficult simple tasks can be for us. I am stronger than these diseases though, which is something I tell myself every single day to help me through my hard times. Really, just despite all my struggles, it has helped me tremendously to find others who relate to the difficulties and to research and understand my diseases.
Living with Ehlers Danlos Syndrome and its associated conditions is a daily challenge, but it does not define who I am. Truly, I am gradually learning to accept and not to be ashamed of my own needs, I’ve discovered new ways to enjoy life. My path may be different from others, but it’s filled with resilience and hope, and that I deserve to be proud of myself for. At the end of the day, my life is defined by my experiences and not my illnesses. Every day is an opportunity to prove that I am more than my diagnosis and to live life despite.