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Today is the International Day of the Zebra. If you have EDS or follow those who have EDS closely, you probably know we identify with the zebra. This stems from the major issue we have getting diagnosed due to our symptoms mimicking SO MANY other, more common, less serious conditions and an old adage taught in medical school:

“When you hear hoof beats, think horses–NOT zebras.”

The problem is zebras exist, they have hoof beats, and they need to be seen. They need to be diagnosed. BUT, that’s not the point of my blog today. If you are reading this blog or follow this website, you already know that. What I’m writing in this blog is more about the issue that stems from this condition and the way it presents.

Here is a short, not complete list of the symptoms of EDS (Source: ehlers-danlos.com/The Ehlers-Danlos Society):

Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis

Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.

In addition to having EDS, many EDS patients have additional conditions called comorbid conditions. Here are just a few you might encounter:

Mast Cell Activation Disorder
Gastroparesis
Postural Orthostatic Tachycardic Syndrome (POTS)
Chronic Fatigue
Anxiety
Sleep Disorders
Cervico-cranial instability

So, if you’ve recently been diagnosed with EDS, you have a LOT to look forward to (I need to get a sarcasm font, because I use sarcasm A LOT and it’s hard to tell, but in this case, this is obvious sarcasm). My sister was diagnosed this past summer. We were very expectant of this diagnosis shortly after my diagnosis, but very similarly to me, about her mid-20’s, she has had an onset of symptom after symptom. Just like most EDS patients, she is now navigating a sea of doctors–some of whom know A LOT about EDS and some of whom know very little about EDS.

Two Zebras

Like most EDS patients, she will have to see many doctors yet to determine which of the other conditions she has. She lives all the way on the East Coast, so I can’t help her find doctors or be as much of a resource as I’d like.I don’t like to think about it, actually. I wanted to be the only one of my siblings with it–not because I wanted to spotlight, but because I know how truly challenging this condition can be.

AND STILL, my own sister, who has the SAME connective tissue condition I do, looks nothing like me when you see us side-by-side medically. While we both have chronic pain, it is in different areas and in different severity for each of us. She has major issues with her hands and fingers that make it challenging for her to work with a computer; I am fortunate to still have lesser damage in this area. I use a wheelchair more of the time than I am ambulatory; she is not yet using any mobility device. We share some symptoms like chronic migraines and anxiety, but still, at the end of the day, aside from the things that lead to a diagnosis, we do NOT look exactly the same in our EDS battle.

The Ehlers-Danlos Society released a video today. You can find it <a href=”http://”>HERE.
While the video itself is great, there was one quote that stuck out to me.
“No two zebras have identical stripes.”

I have noticed a tendency among those with this condition to worry too much about where they fall in terms of their severity and whether or not they “count” when it comes to our community. Working together to understand the symptoms we share and the resources available is helpful. Determining whether or not someone else’s pain is valid based on a scale of your own symptoms benefits nobody. If you feel you are less severe than another patient, you are valid. If you feel you are more severe than another patient, THEY are still valid. Most importantly, remember that we are all more than patients; we are human beings–and that matters more than any of the rest of it.

Since my diagnosis, some of my symptoms have improved thanks to intervention. I understand what POTS is and in general, I can keep it in check well enough it does not affect my daily life as much as it is before I even knew it was a real condition. Other parts of my condition have gotten dramatically worse. My spine is more curved than ever and I now use a wheelchair much of the time due to the irreversible damage to my spine and legs. I now have to park in handicap spaces and worry about judgment from others when I don’t use my chair. If you are a child newly diagnosed whose symptoms are much less mild than mine due to your age and early intervention, don’t feel less valid–feel grateful that people are beginning to listen and understand and diagnose. Early intervention is absolutely the key to staying on top of how much EDS damages our joints.

Let’s all love each other regardless of what our stripes look like. Let’s help each other no matter what symptoms we see or know or share. Let’s understand that EDS is a condition that exists on a wide spectrum and affects people differently, but what we know without question is that coping with the reality that there is currently no cure is MUCH easier when we have others in our life who understand that same need to accept reality.

Love a zebra today. Love a zebra every day, really. We could use it.

Also, Two Zebras

If you have a chronic pain condition, you probably know just how much work it is to exist. I read one of those internet memes the other day that had me thinking. It said something like,

“No, you’re wrong. I’m not faking being sick. I’m faking being well.”

It made me laugh for a second. If you have EDS and have ever parked in a handicapped parking space without needing a wheelchair, you have probably had at least one person tell you not to park there. I have been accused by multiple people of seeking attention or pretending things are worse than they really are.

After I laughed, though, I started crying. You see, my pain has been absolutely out of control lately. I started a new job just under two months ago and my doctors and I already decided I can’t physically handle it. I have pushed myself every single day to get to my office and do my work, smiling and greeting people through pain, all the while my medications getting less and less effective and my wheelchair becoming more and more necessary. I used to come home after work at night and be able to enjoy myself. Now, less than six months in to my marriage, I find myself coming home from work and wanting to do nothing but lay in bed and watch TV because my body hurts so much. I work primarily in an office. I sit primarily behind a desk. Most people who see my at my job would never even guess that I get home and often choke back tears asking my husband to work knots out of my muscles and then cry as he has to push on the really painful spots because that’s the only way to get rid of them.

I quit my job. It broke my heart. I am not someone who quits a job after two months, but I know I cannot do it and I need to accept that, but I am still overcome with guilt thinking of what inconvenience I have caused others. I am someone guilty of measuring my value by my productivity and I do not feel productive.

I was back home over this past weekend for a family funeral. We lost a wonderful man. It was absolutely devastating–and the first time my extended family really saw me in my wheelchair. It was the first time my parents saw what happens to me after a full day of activity now. It was the first time people close to me realized how truly exhausting it is just to exist in a body that doesn’t work right. Between the emotional and physical pain, I am still tired almost a week later.

Why am I writing this post that seems like me just whining about how hard it’s been to be me lately (even though I promise you I actually do like being me)?

Because it can be lonely here and it should not have to be.

I am making a conscious choice to share these massive struggles with you, because I’ve read the struggles of others lately and I do not want them to feel alone. I want to remind the world that just because someone has pretty makeup on and a cute outfit doesn’t mean they aren’t in incredible pain–in fact, that makeup and clothing might be their best effort to hide it. I want the others who are currently in pain that feels out of control to know there are others who are laying in bed wishing they could go do something and feeling guilty for holding others back.

I am 28 years old and I cried on my mother’s lap this weekend about wishing I had a normal body.

Kids with EDS feel that way, too. They need to know it’s okay to feel that way sometimes. They need to know not to live there. They need to know sadness and grief over their condition is natural, but isolation is dangerous. They need to cry to a parent or a friend instead of hiding their pain until they cannot bear it anymore. We lose chronic pain patients to suicide because their mental health becomes too great a burden as they wish and hope for a “normal body” and have no outlet for those emotions.

I have made many mistakes in the last few months. I have overlooked the struggles of others while enduring my own. We must all work to see pain in ourselves and pain in others. We must avoid the loneliness and isolation of chronic pain and chronic illness. We must allow our emotions to have an outlet before they take control. When you lose another thing in your life because of this crappy condition, you are allowed to be angry. You are allowed to be sad. Your life, though, it is still beautiful. You are still wonderful. I think you will find in recognizing others’ pain, you may find relief and comfort for yours.

I may not be able to do the jobs I hoped I could do. I had dreams I can no longer achieve due to my physical limitations, but I also have new dreams I wouldn’t have if I didn’t have EDS. I’m going to work on those for a while. I’m going to remind myself of all the beautiful people in the world who don’t care if I look pretty and say I hurt; they believe me anyway (and want to know the name of my eyeshadow palette so they can look pretty through the pain, too).

Remember: I am here. We are here. Stay here.

Together we are stronger!