This, I Believe – Poetry about life with EDS by Caitlyn Keller

I’m not often moved by youtube videos, but this one is too wonderful not to share. It tells my story, it tells the stories of people I khow who suffer from Ehlers-Danlos Syndrome. Does it tell your story too? I wish I could maintain this positive perspective more often about my situation, but if I can for even a little while I consider that a win. I am still struggling very much with acceptance. Videos like these help me to accept that I am a mutant.

How did this video make YOU feel? Comments welcome. Am I the only one who is nearly in tears every time I hear it? I want to hear drummers in the bends of my knees. Would we be better off if everyone was a little bit broken?

Ehlers Danlos Syndrome International Registry

When I discovered I have Ehlers Danlos Syndrome, I felt very alone. After much discussion, and looking at resources that were already available, I realized that finding support you can access in person isn’t easy. I’m always needing suggestions for local resources, but I am fortunate enough to live in one of the few areas of the US that has a long-standing EDS support group meeting once per month.

If you have EDS and you’re trying to find someone to talk to who REALLY understands, check out the Ehlers Danlos Syndrome International Registry.  There are so many zebras there! Maybe you’ll find a local friend.

Writing a letter to the person who saved your life

Note: This is the letter I sent to the therapist that treated me in 2001. I had not contacted her in 12 years. How do you find words to thank a person for saving your life?


I hope that this email finds you.  I sent you a linkedin request with as much of a note as the site allows.  I’m sure that what I said wouldn’t have been enough to jar your memory – and the photo of me doesn’t really look like me.  Even if the photo did look like me, I realize that you have touched so many lives that it is probably hard to remember them all!

I came to the treatment center in 2001.  I was abusing prescription pain medications during a long illness.  I had a shunt placed in my head to relieve the pressure on my brain.  I had been sick for about 18 months, and had basically lost the will to live.  I didn’t know how to find myself, or define myself outside of my illness.  You taught me how to think of myself as a well person again.

I was very co-dependant with my Mother, who also abused prescription pain medicine.  I grew up in a really dysfunctional household, where I was the caretaker for the adults and my little brother.  You showed me that this wasn’t normal and that it would be ok if I got angry about the childhood I had lost and the abuse I endured.  So, with you, I got angry for the first time in my life.  It was overwhelming and I was scared that I couldn’t contain all of my anger and misery if I acknowledged it.  You proved to me that I could.

At the age of 25, while at the facility, I felt empathy for the first time in my life.  This sounds dramatic, but with everything I had going on at home growing up I never really learned how to care about other people – only the people I had to take care of.  I’m not sure how this happened exactly, but I found myself crying for someone else’s pain at an AA meeting.  This liberated my soul in ways I didn’t even comprehend at the time.

You were the first person in my life that believed in me SO much that you made me think that all of these things were possible.  I am certain that without the help I got under your care I wouldn’t be here today.  That’s not hard for me to be sure about either, because my Mom did finally die of an overdose four years after I left treatment. I did everything I could to help my Mother, but the only thing I could do in the end was to let her feel the pain she was creating.  It didn’t work, but thanks to you I know I was doing the right thing and I don’t suffer guilt about trying to save her life even though I wasn’t successful.

You also wanted me to go to OA meetings, and I’ll admit that I was pretty angry about that at the time.  I weighed probably 250 lbs or so when I was an inpatient there, but I couldn’t accept that food could be a drug or an addiction.  I weigh 120 lbs now, and I do finally understand the point you were trying to get across to me back then.  It took a while, but I finally got it!

This email is to make me feel better if I’m honest.  You have given me more than anyone in my life (except my husband who has now been with me for 10 years).  YOU are a big part of the reason I was able to find a wonderful man to love me.  I was taught at RI, healthy people don’t fall in love with sick people. Thank you for making me healthy enough to find a person who loves me exactly as I am.

I want you to know that despite continuing medical issues, I am very happy with my life.  I was recently diagnosed with Ehlers Danlos Syndrome (a genetic disorder from birth, which was what was wrong with me all along medically).  I am still coming to terms with finding out that I have had this genetic disorder for my entire life, but I’m confident that with what I learned from you I won’t be consumed by it.

I attached a photo of me with my Mother, Grandmother and Husband.  That photo was taken the last time I saw my Mom coherent enough to have a conversation, and still alive.  You may actually recognize me in this older picture.  I’m proud of what my life has become, and I am happy to be a normal weight person.  I hope you are proud of me too!

The Last Supper

I feel like a complete person, finally, and I am learning to love myself more every day.  I owe a debt I can’t repay to you, but I’m doing my best to pay it forward in all the ways that I can.

Thank you for saving my life.  Even though I forgot your last name, you never left my heart.  My grandmother almost died this past weekend, and I was getting things out of her attic.  I found all the letters I wrote my Mom while in treatment, and the materials that you sent her.  I was finally able to find you!

Road to Diagnosis – Part 4

Turning 21, getting a good job at the microchip factory, and finally having my own place seemed to solve so much.  Having some illusion of control over my life helped my mental state immensely.  The shifts at the factory were long, and they caused a great deal of pain, but I was self-medicating on my time off and my situation really wasn’t THAT bad yet.  Or at least I convinced myself of that.

Not that bad still included some injuries to my hands and some back issues that kept me off work for over three months.  Another diagnosis of degenerative disc disease, and now also bone spurs on a couple of my thoracic vertabrae.  When I returned to work from my ‘back vacation’ I could tell that my co-workers thought I was faking it.  This only made me work harder.  In retrospect I realize that I was doing a lot of damage to myself during this time, pushing myself and trying to prove something, but I was medicated and most of the pain hadn’t set in yet.  My factory job got harder and harder for me to do, but being a union thing, I wasn’t going to be fired for medical issues when things did fall apart.

I knew I couldn’t keep doing that job forever, so I started to look for other openings within the company.  I thought I found my salvation when I landed a job on the ‘management’ side as a Document Controller.  This meant a cushy office chair and no more walking around on steel floors and taking that pesky suit on and off 10 times a day.  I had the computer skills needed from my time at community college and the position was mine!

The triumph was short lived though, I guess the boss just didn’t like me.  Maybe it was adrenaline rushes on my part too, but I spent most of the next six months anxious I’d be fired and battling ‘tension headaches’ on a daily basis.  My menstrual cycles were still horribly painful, so between the headaches and the monthly – I became ‘that sick girl’ at work yet again.  I kept seeing my doctor about the anxiety and headaches and he kept prescribing medication that masked the symptoms so I could function.

It was a Friday morning, the one before Labor Day weekend in 1999.  I woke up feeling nauseated, with a headache worse than normal.  I wanted nothing more than to call in, but I was afraid to.  My boss scrutinized Monday and Friday absences worse than the rest, much less on a holiday weekend.  I drug myself into the shower and leaned against the cold tiles and tried to summon the courage to get myself to work.  In the shower I just felt dizzy and more ill, and I knew this was going to be another call in.  I bit the bullet, called my boss and slid back between my covers and slept most of the day.

The next morning, I woke up even worse.  When I opened my eyes, everything was blurry.  My head was pounding, and the shafts of light coming through my bedroom windows felt like icepicks in my head.  The good news was, at least it was Saturday on a holiday weekend.  I had three days to get myself back right for work on Monday.  I laid in bed a while longer, discussing the symptoms with my then live-in boyfriend and assessing what I needed to do.  We mutually agreed that the eye symptoms were too weird to ignore, so I called the nurse hotline I had available through my insurance.

The nurse of course insisted the emergency room, yet I still argued with myself that it might not be necessary.  I waited and took another shower leaned against those cold shower tiles.  Not feeling any better after the shower, I allowed him to drive me to the ER in Orlando.  The next few days are a bit of a blur, but I’ll do my best to recall the highlights in part 5 of my epic saga.

Reverse Namaskar

EDS Patient’s Bill of Rights

Reverse Namaskar

Reverse Namaskar

The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my EDS was undiagnosed. My experiences don’t seem to be unique. Many members of the support groups I participate in have had talked about similar experiences with new doctors. Because of these issues, I have a very hard time trusting doctors. This is common in patients with Ehlers Danlos Syndrome. The sole purpose of this Bill of Rights is to ensure that my needs are communicated up front, and to discuss them with you so that we can build a great doctor-patient relationship.

1. I have a right to be treated by medical professionals that believe that Ehlers Danlos Syndrome exists. It is hard to believe that there are still people in the medical community that don’t even think hypermobility causes problems and chronic pain. My hypermobility is not benign, and my symptoms are NOT limited to my joints – because collagen is not limited to my joints either.

2. I have a right to be treated by medical professionals that believe that I have Ehlers Danlos Syndrome. This is a rare condition, but invalidating my diagnosis on the first visit means that we can never have a good relationship. I’ve struggled fifteen years to find an accurate diagnosis, and I won’t be treated by someone who thinks my diagnosis is wrong on the first visit.

3. I have a right to be treated by medical professionals who are willing to continue their education to provide support and treatment that is appropriate for my specific condition. EDS is such an unusual set of disorders, the cookie cutter approach to treatment will not work for me. I have tried so many treatments before arriving here that it’s very unlikely that any solution for me will be simple, and as a doctor you must be willing to think outside the box.

4. I have a right to be treated by medical professionals who believe in my complaints. As a patient with undiagnosed EDS, I was often questioned extensively about my symptoms and then accused of being a hypochondriac or malingerer. You must believe that I don’t want to be sick either, and that my symptoms are real. I need to trust you, and a huge part of that is knowing that the trust is mutual and that you believe in my will to improve.

5. I have a right to be treated by medical professionals that do not solely focus on my psychiatric issues as being the source of my problems. EDS causes anxiety and depression, chronic pain causes anxiety and depression, POTS causes adrenaline rushes and tachycardia. It’s all very complicated, and there are psychiatric issues, but they are more symptoms of a bigger problem and should be treated as such. Don’t dismiss me as anxious or depressed without treating my other problems too.

6. I have a right to be treated by medical professionals who are able to admit they don’t have the answer to everything. In order to find new treatments and make progress, it is imperative that my medical team never gives up on searching for answers. Many EDS patients miss being diagnosed because their medical team labels the issue as fibromyalgia or chronic fatigue and then stops looking for new answers. Diagnosing EDS is likely just one piece of my medical puzzle, so it is important that the search for treatments and answers doesn’t end there.

7. I have a right to be treated by medical professionals who take my pain seriously and work to bring it under control. The link between unbroken pain cycles and psychiatric issues in the chronic pain patient isn’t debatable. I realize you are bound by laws and your oath, but EDS is very painful and often requires use of strong medication and other pallative interventions. If you don’t believe in the severity of my pain, if you don’t have the resources to treat my pain, if you think I am drug seeking, tell me so that I can find a doctor who is able to help me.

8.  I have a right to be treated by medical professionals who respect my intellect and knowledge about my disease.  Because EDS is a rare condition, we are much more informed about our medical issues than your average patient.  We live EDS every day, some of us research our conditions every day.  Unless you are putting in the same number of hours researching my issues, please don’t dismiss me when I come to you with a specific concern.  I am open to being wrong (and if it’s a bad thing I *want* to be wrong).  Please explain to me why I am wrong though, so that I don’t need to worry.  My disease has made me capable of understanding things that your other patients might not understand.

I know that YOU were not one of the doctors who let me down. I’m not blaming you! My case is complicated, and I definitely don’t expect you to have all the answers. I realize that I am the sort of patient that can scare a doctor because you can never make me well again. But, if you are willing, I will do my very best to start our relationship with a clean slate, even though I’m scared. If you give me a chance, I promise I will give you one too. You might not be able to cure me, but together we can make me better than I am today – and I really need your help!

The Harm of Inaction

You don't LOOK sick!

You don’t LOOK sick!

Living with chronic pain is hard enough when people believe you.

When it comes to Ehlers Danlos Syndrome, the condition being mostly invisible, I’ve experienced much more skepticism than belief in dealing with the medical community. It seems like very few doctors are ever willing to admit that it’s possible that they don’t know the right answer, or that someone so young could be in that much pain so frequently. When my intracranial pressure was high, and measured at three times normal, I got more pain medicine than you can shake a stick at. It flowed like water from the pens of the doctors – all because the problem could be observed and measured by shoving a needle in my spine.

The issue is further compounded because my mother died of a drug overdose. I want to be honest about this with all of my doctors, but its already such a struggle to get any pain management that I often won’t tell them because I’m afraid of the knee jerk reaction that always follows. In the state of Kentucky, the reaction is even worse. The good ole’ Bluegrass State has one of the most horrible pieces of legislature in place that I’ve ever encountered as a patient. It’s called the Pill Mill Bill, and I really think that it’s going to kill some people. The victims will be people who just can’t manage to obtain pain medicine, but also can’t manage to live with the pain either.

I read a story today about a male model named Dorian who had complications after a routine oral procedure. He wanted to fix some slight imperfection, a bad tooth or something. He got more than he bargained for when the procedure caused a dislocation of his jaw. Dorian didn’t know he had EDS when he signed up for surgery and had been mostly asymptomatic prior to having dental work. What followed for him was a quick spiral into the land of EDS pain as his body started falling apart. He managed to get a diagnosis of EDS, which is more than a lot of people ever get, but it wasn’t enough. He hung himself out of desperation to escape a pain that was inescapable.

I know that doctors are sworn to do no harm, and I believe that most of them are actually trying to do no harm when they tell you that you couldn’t possibly be in enough pain to warrant a long acting pain medication. Morphine at 40, surely you’re joking?  There is a lot of harm being done by not prescribing, doctors giving in to fear that you’ll be addicted or that they’ll lose their license. Where is the fear for people who can no longer stand the pain and will want to give up and die? Dying is dead no matter how you get there, and even in addiction there is still hope for life.

Addiction and dependency are not the same thing.  The American Society of Addiction Medicine defines addiction as “Addiction is characterized by inability to consistently abstain, impairment in behavioral control, craving, diminished recognition of significant problems with one’s behaviors and interpersonal relationships, and a dysfunctional emotional response.”  Many drugs cause side effects, such as somnolence, confusion and problems with coordination.  These are not behaviors, they are side effects.

There have been points in my life prior to this diagnosis when I didn’t know if I could go on living with the pain. I doubted my own mind, my own experience of the pain and sometimes even managed to convince myself that it wasn’t that bad. It was that bad, it has been THAT bad since I was only 13 and it’s getting worse every day. I may be at a crossroads where I have to choose dependency on medication or dependency on pain. It seems like an impossible choice to make.

Road to Diagnosis – Part 3

Even though I *have* EDS, I don’t know that I actually understand how it progresses, how it becomes worse – how the damage becomes so overwhelming that it starts to steal your life.  As a teenager I did live with daily pain that wasn’t normal.   I didn’t realize how abnormal it was, so I just kept on keeping on.  The pain was nothing like it is now, after years of abusing my body by doing all the things that ‘normals’ do.  Now, by ‘normals’, I DO NOT MEAN THAT EVERYONE WHO DOESN’T HAVE EDS HAS AN EASY TIME, or has even necessarily has their health intact.  I realize a lot of people struggle for a lot of reasons, but for the purpose of my blog I’m going to call people who don’t have EDS ‘normals’.  If it makes you mad, feel free to leave me a message about it.  It doesn’t mean I’ll *do* anything about it, but I know I’m bound to piss someone off at some point!

Because I wanted nothing more than to move out on my own one day, I started working as soon as I could.  I was babysitting summers at 14 and had already secured my first ‘real’ job at Taco Bell a few days before my 16th birthday.  I wanted to work.  I needed to work.  Trying to attend community college without any support from your family requires that you DO work.  I took a job at a telemarketing agency while I was in college to try to make ends meet.  Thanks to my father being disabled, and my mother’s creative tax filing skills I managed to qualify for a Pell Grant to attend school.  Well… I did qualify for a grant, until I started to make more than a couple of dollars a month from work.  When my income got added with my mother’s, I lost my eligibility despite the fact that she was unwilling to contribute a penny to my education.  To emancipate from her at that age would have required legal maneuvers that I was unwilling to undertake (remember, I didn’t know how to say ‘no’ to her yet).   So I had no choice about working, because my mother was charging me rent and I had expenses if I wanted to attend school.  It was a real catch 22 situation.

What I needed was a REAL job, and I found one at a microchip manufacturing plant (which used to be a part of AT&T).  It was a union job, well paid.  I couldn’t afford to stay in college without a job and I didn’t have the energy to go to classes once I started working 12 hour shifts at the factory.  What it did allow was for me to live on my own FINALLY, even if ‘on my own’ meant that I was paying the mortgage on my mother’s house that she no longer wanted to deal with.  She moved on to Kentucky with her wife, and I took over the reins on a 3 bedroom, 2 bath house on the 5th tee of a golf course in Orlando.  It sounds really posh, but old housing developments with golf courses are a dime a dozen in sunny Florida.  The house was run down and needed a lot of attention, but it had enough space for me to bring in roommates to help make ends meet.  This was the beginning of one of the better times in my life.  I was about to turn 21 and here I was working at a great job, living in my ‘own’ house and partying with my crazy roommates on my days off.

This new life had some pain to be sure, but it was manageable.  I finally was finally free to take care of no one but myself and it felt like such a relief!