The Parts of Me I Keep Hidden Living With Ehlers-Danlos Syndrome

I went to see the Backstreet Boys in concert last Friday night. Why, you may ask? Because when one of your very favorite friends asks if you want to recreate a childhood memory and go back together to see your preteen crush perform again, you say yes. And you have an amazing time singing and dancing to those five guys who are probably a little too old to still be singing about their sex appeal. But we really did have so much fun. It was a long overdue girl’s night out spent laughing so much that my cheeks hurt.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I wonder, though, what people would think if they knew what the girl at the concert — laughing and dancing, who had meticulously done her hair and makeup to look like a “normal,” happy woman in her early 30s — was actually going through behind closed doors. My friend I went to the concert with also has a chronic health condition that impacts her in ways she rarely shows. We talked about how people comment, “oh, but you look so good!” and how we never quite know how to respond to that.

I hesitate to write this post because I’ve spent so many years trying to hide my pain while trying to create this image that I’m doing great. In all honesty, that’s rarely the case with this health condition I’ve been given. I’m not sharing any of this to get sympathy or pity, but I’ve heard so many others with invisible illnesses talk about how frustrating it can be to hear “but you look so good,” when inside they’re feeling anything but. So, it’s my hope those of you reading this who are in a similar boat might be able to nod your head and say, “yup, glad to know I’m not alone.” And for those who have been blessed with good health, maybe taking a second to peer into my world will help you to love and support those in your life who may be struggling in a similar way.

So, what do you see when you look at me and I’m out with a friend or having a date night with my husband? You see the me who had to prepare for this by resting a whole lot that day and probably spent too much time getting ready, doing my hair and makeup, and trying to make myself look presentable to the world. I might even look great to you. But what don’t you see?

You don’t see the me who couldn’t shower for two straight days this week because my head hurt too bad to even lift it off my pillow. You don’t see the me who heard my husband doing the dishes again and beat myself up for not being able to pull my weight around the house. You don’t see the me who lay in bed and cried after the concert because my head and back hurt so bad I couldn’t sleep, or the me who spent the entire next day in bed recovering when I wanted to be out enjoying the sunshine. You don’t see the me who felt a little twinge of jealousy when my friend’s younger sister talked about her job working with disabled high school youth because I miss my job so much and wish I could work right now. And then, the me who instantly felt bad for feeling that way because my friend’s sister is one of the kindest people on the planet and deserves every ounce of success she attains.

You saw that picture I posted on the Fourth of July with me hugging my dog and smiling? What you didn’t see was the limbo I’ve been living in ever since I got back from having a procedure done to help my chronic headaches, which gave me about two weeks of relief… and then my pain came back again. My doctor wanted to give it a few weeks and then touch base. So, ever since then, I’ve just been waiting, unable to exercise or even vacuum my house because the discharge instructions for six weeks post-procedure were no bending, lifting, twisting and absolutely no exercise. You haven’t seen the frustration that’s caused me as a pretty stubborn person who doesn’t like to ask for help. And you haven’t seen the depression I’ve been dealing with now that I’ve remembered what it’s like to not have a headache every day. It was pure bliss and I was so excited. Before this, I honestly couldn’t remember what it felt like to not be in pain every day. Constant pain was just my “normal.” Then, I got two weeks of relief and I want it back more than anything.

You may have seen the picture I posted enjoying the California sun but you didn’t see me walk into the doctor’s office feeling like I was going to throw up because the whole time I was thinking, “what if I traveled all this way and the doctor says he can’t help me? Maybe I shouldn’t have come out here.” I’ve spent a lot of time second-guessing myself for going all the way out there to see a doctor who is an expert on the problem I’m dealing with, which few other doctors around the country know how to treat. We wanted to go to one of the top experts in this area to get the best treatment possible. I’m glad I did, but it still seems a tiny bit “crazy.” Let me explain a little.

Last year, I had my second back surgery and after that, my headaches started to get worse. By the end of the day, they were unbearable, and I was having such bad dizziness that I had to stop driving for a while. One of my doctors suggested I might have something called a cerebrospinal fluid leak based on my symptoms. Each of us has cerebrospinal fluid (CSF) surrounding our spinal cord, which our brains also float in. When a person has a connective tissue disorder, as I do, the outer membrane (called the dura) that surrounds the CSF is weak and more prone to tears. They can happen spontaneously or after surgery, a lumbar puncture, a car accident, epidural or anything else that punctures or tears the dura. When this happens, CSF begins to leak and the brain doesn’t have that nice cushion to float in anymore. This causes headaches that are worse when upright and that can be very debilitating. My doctor found three leak sites along my spine and showed me, on my MRI, the changes it had caused in my brain. I thought, “no wonder my head hurts all the time.” Unfortunately, CSF leaks are often misdiagnosed for years as chronic migraines, which people are told they just have to live with, when a CSF leak can actually be treated by a knowledgeable doctor.

I was treated with something called a blood patch to help my body close the leak sites. The doctor performed the procedure twice while I was out there and after the second treatment, my headaches were completely gone. I thought my constant head pain was cured. I excitedly told people that my 16 years of headaches were gone. Then, two weeks later, I had an incident where I bent and twisted a bit by accident and got a sharp pain in my back where I was patched. After that, my headaches returned. The doctor said he’s seen this before. It seems you can move the wrong way and cause the blood patch seal to break or something along those lines. I didn’t realize just how careful I should have been. I’m still happy to finally know what’s causing my terrible headaches and thankful to have a great doctor who is so knowledgeable and can treat it. But now, we have to wait to hear from him and will probably be flying back to California, then practically wrapping me in bubble wrap after the procedure.

So, you haven’t seen the me who has continually beat myself up about bending and messing everything up. The me who remembers the joy and happiness expressed by my family when we thought my pain was cured but feels like a disappointment now that my headaches are back. The me who has no idea how to explain all of this in simple terms to the people whom I told “hey, a miracle happened! My headaches are gone!” When my constant pain was gone, I started dreaming big dreams for the future, and when they came back, I was crushed. But you didn’t see that.

It’s not easy when you have an invisible illness where you look fine on the outside but struggle so much on the inside. But I also think of the quote attributed to Wendy Mass:

“Be kind, for everyone you meet is fighting a battle you know nothing about.”

I wonder how our perceptions and judgments might change if we asked those around us to be brutally honest and share what people don’t know about them. Everyone has battles and demons that no one knows about. So, I encourage you to try to remember this and to try to be kind to everyone you meet. The world certainly could use more of that.

Follow this journey on the author’s blog.