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It’s funny whenever I find myself taking a break from writing, it’s usually because I’m doing the same thing to blog readers as I do to those in my own life–pretending everything is going so well I don’t have anything to say. If any of you know me in real life, the idea of me having nothing to say is, in itself, hilarious. Yet, here I sit, at my desk, in my wheelchair, a dog on my lap, a TENS machine at its highest power attached to my back and I’m still not really sure how to write this blog post.

Essex likes to be cozy

In the world of chronic illness and chronic pain, we all learn to tell healthy and able-bodied people we’re doing “fine” pretty much all the time. We do this for a variety of reasons, including, but not limited to:

  • Our medical conditions are complicated and explaining what is going on would take longer than anyone wants to spend on hearing how we’re doing
  • People generally don’t want to hear when things are getting worse
  • Pity isn’t something we thrive on and we know at some point, it runs out
  • Many people just simply aren’t sure how to react to hearing how we’re doing

I’ve been telling even myself I’m “fine” for the better part of the last several months, even as I fought off a severe infection that required multiple emergency room visits in which physicians did not understand my condition and in which I was time and time again not given the necessary antibiotics to fight the infection. I woke up one morning with a fever of 104 degrees, feeling like I was naked on an iceberg, and shaking so hard I couldn’t even type out a message on my phone. That day was our second trip to the emergency room. Even then, I didn’t get IV antibiotics.

I didn’t get them until the doctor who generally treats the pain caused by my EDS saw me for a regular appointment and realized how incredibly sick I still was even after 9 days on antibiotics. I was tachycardic. I had a fever. My kidneys were so infected the pain in my back was far more severe than even on a normal day. As he looked me over, he called the emergency room down the street and instructed them on my condition, telling them exactly how serious this was.

He also looked at all the blood work from all my previous ER trips…and then from all my trips to all the doctors over the last six years, which is when he noticed a commonality. I had alarmingly low levels of a necessary enzyme in my blood consistently for six years. These levels had been flagged in my blood work every time it had been drawn for all these years and are indicative of a condition found in 1 in 100,000-300,000 people. It is a metabolic bone disorder that cause almost all of the things he and I had been trying to figure out for years. You see, I have incredibly curved long bones in my legs. I developed scoliosis in adulthood. I lost my baby teeth before preschool. My pain responds to almost nothing. These are all MAJOR indicators of Hypophosphotasia, marked by these clinical symptoms, and below normal levels of alkaline phosphotase in the blood. He was the first doctor to notice this. Normally, in his words, because it is even less known than EDS, they look only for extremely high levels of ALP, a marker for kidney failure.

He immediately consulted genetics as I was sent to the emergency room for treatment for the infection, which is now finally gone. I received a message the following Sunday night from him (seriously, he is THAT dedicated a physician) letting me know genetics agreed with him that it is extremely likely I have this condition and would be contacting me. Genetics says it is either this condition or another metabolic bone disorder, but by some stroke of luck, a company offers free testing for this condition, so currently, my spit is at a lab after my husband mailed it for me, because I was just too anxious.

How have I handled all of this? Well, I stopped using my mobility aids and have been acting like I’m a completely healthy and able-bodied person through incredible amounts of pain. I have tried to convince myself it’s not possible I have another condition doctors missed for years, especially one that was IN MY BLOODWORK by acting healthy and “fine.” That caught up to me today, in the middle of a grocery store aisle when I dropped something on the ground and realized I couldn’t bend far enough to pick it up. By the time I got home, I could barely leave the couch and had to use my wheelchair the rest of the day, mostly through tears and anger.

I’ve resolved to accept my reality no matter what it is. In fact, it could be good news to know exactly what is going on with my body and why I have had these struggles that do not necessarily line up specifically with EDS. I’ve also resolved to stop saying I’m fine when I’m not. I’ve resolved to stop trying to convince myself I’m fine when I’m not.

It’s a REALLY good idea to work on your mindset. You can work towards a positive attitude. You cannot trick your body in to having different DNA than it does. Sometimes, like I have written before, accepting your limits is okay. Sometimes, when someone asks how you are doing, it’s okay to say, “I’m in a lot of pain today, but my husband and I had a great dinner date last night” or “Thank you so much for asking; I’ve been having a really hard time with my health lately and I need someone to talk to.”

So, I’m not fine, but by accepting that, I think I will be much sooner.

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.


Hello, guys! It has been a very, VERY long time since I have written here. There are many reasons in my life why I haven’t been able to share with you for a while, including that my husband and I moved, got a new dog, and started new jobs. For those of you who know me personally, you probably are not surprised I have taken a break from blogging. For those of you who don’t, I’m sorry for the gap there has been in my writing. Please know I have missed being here, missed the chance to share with you, and missed what working with EDS Wisconsin means. Please know that my work here matters so much to me.

We grew by four paws this fall!

So, what brought me back to share four days before my favorite holiday? Pain. I want to write to you, for you, and truthfully almost WITH you because I am in pain. 

Most of us with EDS spent a long time being told nothing was wrong with us. We were given a laundry list of things that would make us “better.” For many of us, there was a phrase that sounded something like “it’s all in your head.” For me, it was 13 years from the first time my mom begged a doctor to explain what was happening to me until the day a doctor actually did. 

This creates a huge problem for us. We take offense then, later, when someone suggests we might need psychiatric treatment. It makes sense, right? You spent most of your life being told you’re crazy, someone finally tells you that you actually have something wrong with your body, and then they suggest you see a SHRINK? Why on earth would you need psychiatric help if your disease is real? Why would you need someone to “fix your head” if the problem is ACTUALLY in your body. 

Well, I have one, huge, giant newsflash for you:

Having an incurable, genetic condition that causes severe chronic pain and usually comes with other conditions with their own symptoms–that causes psychiatric symptoms in itself. You don’t need psychiatric help because you are imagining your pain. You need psychiatric help because you ARE NOT imagining your pain.

I work with a great psychiatrist. I started working with a new one recently because of some trauma I’ve experienced. I knew I needed more help than I was getting where I was going before, so I asked my doctor for a referral to psychiatry. I will never forget explaining EDS to him the first time I met him, though, and the experience I’d had in my childhood with my pain and the doctors and the whole “it’s in your head” thing.

Of course it’s in your head. That’s where we feel pain. That’s how we feel pain. Without your head, you couldn’t have pain at all.”

I have never, in my life, felt such validation. I think those words are burned in to my brain now. I wish I could go back and hug 13-year old Stephanie against my chest and tell her those words in her ear. I wish I could hug her as she begged her mom to find a doctor who would make the pain stop and not one who would just tell her she’s fat. 

There is no cure for EDS. That doesn’t mean you won’t get “better.” It does mean it will always be a part of your life. For some, like me, that means using a wheelchair when I’m only 27. For some, it means not being able to work outside the home. It may mean co-morbid conditions that making eating, drinking, and just existing in the outside world a challenge. For some, all those years of being told it wasn’t real can cause very, very real psychiatric conditions. That does not negate the very real physical part of the condition. It does mean you need help.

I was recently diagnosed with Post-Traumatic Stress Disorder. I’m not going to write about the incident leading to that diagnosis. It’s not relevant to my blog and I’m still learning to cope with it. What I do want to tell you is this:

-My EDS pain is as well-managed as it can be, but for an EDS patient, it is poorly managed. Because of the nature of my pain, I have not responded well to many treatments and we’ve resorted to wheelchairs and other ways to reduce how much I use my body because there simply has been no other successful means of handling my pain.
-When my stress levels are worse, that pain gets EVEN WORSE than it already is. If I rejected the psychiatric help I need, I can’t even imagine what kind of pain I would be in.
-I also find a lot of value in just having someone to talk to who isn’t in my life every single day about the reality of living with EDS. A psychiatrist, psychologist, school counselor, or any mental health professional can let you talk about everything in your life that’s bothering you without it becoming a self-centered nightmare like it would if you spent an hour with a friend in the same way. 
-I highly recommend signing a disclosure agreement that lets your pain doctor work with your psychiatrist. My experience having these two work together has improved my quality of life. I’m not your doctor–but these people would be. Let them help you.

At the end of the day, my point is this: stop being offended at the suggestion of mental health care after an EDS diagnosis. Nobody is saying you are crazy.  I’ve written about the “mental whiplash” of thinking you are imagining it and then finding out you have EDS before; any person who has experienced that PROBABLY needs help from a mental health provider.

I reject the notion that it makes you weak to need mental health assistance. In fact, the day I called the clinic and said, “I really need help and I need it as soon as you can give it to me” took some of the greatest strength I possess. There is so much strength in acknowledging your weakness. 

Every EDS patient is amazingly strong. Don’t you dare let anyone tell you otherwise–but also, don’t let that strength scare you away from asking for help.

Together we are stronger!