Alone In A Crowd - The Pain of Ehlers Danlos

I am lucky enough to have close friends and family around most of the time.  But, there have been times that even with all my friends and family around I have felt profound loneliness.

One such time was before I knew I had Ehlers Danlos.  I had been experiencing tremendous pain and trips to my primary care doctor were proving futile.  He would give me pain medicine and tell me to come back if it continued.  Finally, he referred me to an Ortho specialist.  I just knew this guy was going to figure out what was wrong with me.  I even took the day off of school to go see him, I was excited to get to the bottom of this.

I arrived at my appointment with all my MRI's anxious to see what he would say.  He came in the room, not an overly friendly guy, but OK.  He started looking at the MRI's and xrays and didn't have much to say.  He said he didn't see anything.  I felt so deflated.  He did a physical exam as I explained where most of the pain was and how it felt and how excruciating it had become and impossible to live with.  He said he had no idea.  I explained to him that I really need help with the pain as it is too much for me to deal with.  He looked at me and stormed out of the room.

He came back a few minutes later and in an angry voice said, "What do you mean you need help with the pain?  Drugs?  Shots?  What?".  I was stunned and just looked at him because I didn't know what to say.  He slammed the door and the nurse came in a few minutes later and gave me a printed out report and said I was done.

I got to my car and read the report.  At the end of it he wrote, "Asked for 'something' for pain.  Did not give narcotics."  I felt the blood drain out of me.  It was at that moment that I felt a profound loneliness I had never experienced before.  I was feeling something that I could not explain to others in a way that they could understand.  Even more horrifying was that I was alone in this battle and trying to function with constant pain that I could find no relief for.  Even my friends and loved ones could not understand.

At this time I was reminded of Christ in Gethsemane where even God retreated to the corners of Heaven as Christ suffered alone.  But, in His suffering an angel appeared to Him and gave him strength.  My angel came in the form of a former doctor who helped me with my blood clot.  He was sort of a father figure to me and was very caring and understanding. 

I later learned that the ortho specialist had immediately sent out his report to all my doctors so they would be alerted to the fact that I was seeking drugs.  This doctor I went to couldn't believe the ortho doctor did that and said he should be barred from practicing.  He then hugged me and said we're going to figure this out.  It was he that referred me to the right doctors that finally diagnosed my EDS.

Since then I have formed a support group and have attended conferences and have met so many people that understand my pain before I even have to explain it to them because they feel the same thing.  It comforts me and gives me strength to know that I am not alone.  We are fighting a battle because most doctors know nothing about this or they don't understand the scope of how EDS affects every part of the body.  Along with aching, burning joints and muscles we deal with up and down blood pressure, adrenaline highs and lows (energy highs and crashes) several times throughout the day and constant dislocations.  Chronic fatigue from sleepless nights, weak muscles, fragile skin, digestion problems.  All these things are going on in our bodies at the same time - it's crazy.

We confuse doctors, we are high maintenance patients.  We say we're tired all the time, but they see us when we have an adrenaline high and see all the energy we are displaying at the moment.  We say our pain is extreme, yet nothing shows up on MRI's and we look perfectly fine.  Our skin is smooth and velvety.

Thankfully, there are a few doctors who are devoting their lives to researching this and getting published.  They even give up some of their precious time to come and speak to us at conferences because they know how desperate we are to find answers and get relief.  Thankfully, I have a doctor who believes me and is reading the research that I give to him.

I have made it my mission to educate everyone around me about Ehlers Danlos Syndrome so that no one has to feel the loneliness that I felt after my visit to the ortho doctor.