When I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), it felt like everything that had happened in my life up to that point suddenly added-up. My entire childhood and adult life was filled with injuries and accidents that should have been massive red flags for hEDS, but because I was a gymnast and a dancer, it just seemed as if it all went with the territory. I just always powered through it. Then eight years ago, my son and I both suffered a plethora of severe injuries from a rollover car accident. This was when my body finally reached the point of needing REAL help. My healing and therapy took almost a year with very little results. Because we are from an area devoid of any specialists, and very few good doctors, it took a long time to be diagnosed. In fact, we had to move over 400 miles away to Dallas, TX to finally get the diagnosis. But being able to put a name on it didn’t actually fix anything, it just helped it all make sense. Throughout this journey, I have found there are still things people don’t realize about the pain those with hEDS experience, and sometimes it’s hard to explain them.

Here are the six most important things I wish people understood about it.

1. Ehlers-Danlos Syndrome is a rare disorder in which there is no cure. It affects only 1 in 5,000 people  worldwide. Because EDS has been coined as rare, it is far more likely to be overlooked as opposed to being embraced as a potential diagnosis.

It is an inherited condition that affects the connective tissues in the body. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs. hEDS causes joints to bend farther than they should which makes them more likely to be dislocated or sprained.

Because it also affects blood vessels and organs, it is also known to cause heart valve issues.

2. I am always in pain. Yes, you read that correct – always. There are days when it is manageable, and days where I can barely move due to the pain. If I’m out and about, you can be sure that I’m hiding how I really feel beneath a smile (or these days, a mask). I’ve become the queen of hiding how much pain I’m going through because, I think, I’ve just become accustomed to it. That, and the fact that I’ve been a performer for most of my life. It became second nature to turn off emotions when I needed to.

3. My scale of pain changes daily. Matter of fact, it changes constantly. By the hour. Sometimes, by the minute. Some days, you could drop a 40 pound weight on my foot and I’d probably just say “ouch.” Other days, just moving positions on the couch sends me into tears. This might depend on a lot of things:

How well did I sleep the night before?

Did I have physical therapy the day before?

Is my medication doing it’s job?

Am I so inundated with pain, to the point that the smallest thing is excruciating?

It’s impossible to know how well my body will function from day to day.

4. If I cancel our plans, please know it’s because my pain level has unexpectedly risen, or I’ve been injured or become sick. I despise having to cancel anything, but as I said, it’s impossible to predict what my body will do. I will usually try to “power through” it. But that has backfired for me too many times in the past. I’ve had my knee collapse while hiking, and even once broke an ankle by simply missing the curb. That last one meant I had to cancel a trip to Florida with a dear friend that I’d already booked. My body is completely unpredictable, and my pain levels are difficult to deal with.

5. If I don’t respond to texts or calls, chances are I’m just too tired. Being in constant pain is exhausting, and it can really affect my ability to keep up with conversations. Sometimes I zone out during phone calls, or fall asleep when texting someone and take a long time to respond. I promise I’m not ignoring you or trying to be rude, I’m just in a constant battle with my body, and it causes fatigue. It is truly exhausting to be in pain all the time.

6. If I tell you I’m in pain, I’m not just complaining. I need a friend. I’m very lucky to have a support system. But, sometimes if I’m talking to people outside my immediate group (who are very aware of my situation), I’ll mention I’m in pain, and that person may not realize that I’m trying to help them understand how my life is – not just complaining. And when I say I’m in pain, I don’t mean that I just have a headache. If I’m mentioning it, it’s because it’s unbearable, and I need to either distract myself from it, or talk through it so I can decide what to do next. I don’t mean to sound like I’m complaining, I just need support.

This happens to all of us in the EDS community and having Chiari and PoTS adds an even higher toll on the body. I never know what each day, hour or minute may bring. So I have to try to plan everything out as carefully and methodically as possible and pray. I can say I have learned – or I am learning to have a lot more faith. God is definitely showing me it’s all in His hands and His timing.