When providers are in school they are taught “When you hear hoofbeats, think horses not zebras” and this simply means think of the more common possibility.
Well my life is full of uncommon possibilities making me a zebra which hasn’t made it easy on providers let alone people around me. Imagine trying to maintain a friendship when all of a sudden you don’t feel good or get injured from walking (yes true story!) so you have to cancel plans last minute … but this happens over and over … so the friends start feeling like they don’t matter or aren’t important enough when really you just mentally or physically can’t do it. Health does care what your plans are, things are going to happen when they happen folks!
The worst is majority of my health (physical and mental) are invisible so I quite often get the “You don’t look sick” line but inside I am using every ounce of energy to be up and communicate with that person. Another factor to this is “But you were fine yesterday” which could very well be true but every day is a journey; hell every moment is a journey at times! The truth about all this is that we zebras (horses too – we are all inclusive) just want to be seen, heard and trusted the same that any other “normal” person would. It’s not like we are crying wolf here, we battle some hard core crap and whether they see it or not shouldn’t matter nor should how often flare ups happen. I can’t just pencil that into my schedule!
So what makes me a Zebra?
First off, I am not going to get into too much detail about all the diagnosis’ but I just want to give an idea of what it’s like to be a zebra and still conquer life with all this going on so you can see I have learned to not let my struggles defeat or define me!
Lets unload the mental health basket first because that is so important to break stigma and be forthcoming about! I have battled through ADHD as a young child and carried with my into adulthood. Over the years of trauma (physical and mental) I started feeling like I was losing control and I started feeling off in some way. This started me on the path of Depression which led to Eating Disorders (because how else was I supposed to control my crazy messed up life) which led to Anxiety. Along this path I labeled with Borderline Personality Disorder and further down the road officially gained the title PTSD. I say gained because it opened doors for treatment options once that label was put in my chart, the trauma had always been there but the way things go now you need a label to get permission for certain treatments (not right in my opinion but that is how the system works or has worked in my case).
Moving onto the physical health diagnosis basket, unpacking this might take a while so pull up a seat. I was relatively healthy as a child or so we thought because science wasn’t where it is now. I had the colds, bumps and bruises but now knowing the reason of the reactions I had makes sense. I battle an immune deficiency called Common Variable Immunodeficiency (CVID) which is a weak immune system. The 4 signs of a primary immunodeficiency disease (PI or PID) are Severity, Persistence, Unusual or Recurrent. They have since learned a lot genetically so now if it runs in the family is also something to keep in mind. Postural Orthostatic Tachycardia Syndrome (POTS) took us on quite a journey and super scary if I might add but that is something that when I was diagnosed they didn’t know much about and now they are watching for it in my girls because they are learning more. It affects the autonomic nervous system and many other parts of the body like the vagus nerve but we’ll get more into that later on in this journey. Something that took quite a while to be diagnosed with and involved many misdiagnosis was my Ehlers-Danlos Syndrome (EDS). This is a zebra beyond belief because there is some hypocrisy behind it. When I hear that from doctors it takes me back to the quote so I give those doctors some grace and use it as a moment to educate them. This battle I have is specifically with EDS-3 meaning I have type 3 of EDS which is primarily around the hypermobility aspect but they screen me for others at visits because mine presents with multiple patterns. There are actually 13 types and each has their own criteria that must be met before gaining that label.
The reason I went over those 3 main ones first is because I consider those my 3 main physical health umbrellas. An umbrella diagnosis is something that helps that complicated puzzle of your health issues make sense, like the missing piece in a way. So these 3 umbrellas share some other diagnosis which can make it hard to find out the best way to treat it and if that’s the case with you just be patient rather than discouraged (I know way easier said than done but just try). Under my 3 umbrellas I have battles with migraines, psoriasis & eczema, arthritis & spinal degeneration, bladder issues (stress incontinence & overactive), allergy & asthma, irritable bowel syndrome with constipation (IBS-C), acid reflux (GERD), benign essential tremors, TMJ and a newer one that may become it’s own umbrella some day is Dermographism.
This is a lot but I am blessed that I am where I am and I know not everyone going through what I go through can say this which is why I feel called to do my part to help if possible. These diagnosis both physical and mental have been actively going on since I was about 9. Please imagine a tree and my body is the trunk and these diagnosis’ are the branches, now a tree without leaves looks sad and rough but once those leaves bud and grow the tree has a new look to it. I see myself as a tree with me at the foundation, I am still me but I have a lot to hold on top of me so yeah it can be very hard to hold up which is why it’s sad. Then as life goes on and new branches grow it gets heavier and more taxing on the foundation. I feel that in life through hardship we need to look further, why am I the one to go through this – what is this supposed to teach me? All of a sudden when things started to piece together I grew buds and my leaves started to come in. I believe the skills and progress are my leaves, and yes some may fall because they didn’t work but they are still a part of the journey. Please look at yourself this way, you are strong and capable. I love the quote “You have already survived 100% of your worst days” because it’s true, you are so strong to have gone through those so keep going. The best is yet to come, just trust me on this one!
I have to say I am so grateful for science and the advancements, like I truly love it!!! Without it where we are, I honestly can say I wouldn’t be here to talk about all this with you so take a moment and be grateful that your struggle isn’t 10 years ago let alone 50 years ago! That was harder then because providers didn’t know nearly as much as they do now! Now the ticket to that is having a provider that is going to listen to your concerns and help you on your journey (more on that next month on how to advocate for yourself).
As I close I want to remind you that not everything is as it seems to be, so dig a little deeper (love that song from Princess & The Frog) and discover how your pieces are meant to go together or even deeper yet – what greatness are they preparing you for? I wear my stripes loud and proud as should you, don’t let people who only see things as they appear be the narrator of your story. Truth … if they see you as “normal” than whoever you are – hold your head high and be proud because you my friend are killing it to make it look easy when I know you’re hurting inside on this rollercoaster of a journey!!!
If this touched you in any way or you think this could help someone, please give them the link (@surviveyourstruggle | Linktree) so they can connect with me in whatever format works best for them.
Also check out my Survive Your Struggle – YouTube page on the 2nd and 4th Monday of the month to learn the skills that helped me get where I am at about Being A Zebra as this blog is only a piece of puzzle to help you!
~ Peace and Love my fellow Warriors ~
#BeingAZebra #ZebraStrong #GrowYourTree #InvisibleDiagnosis #SeeMeForMe #SurviveYourStruggle
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