Living on the other side of chronic pain.

By Caroline Lowe

It doesn’t get any easier each time when the person you love is sobbing because the pain is so intense and the pain medications are not helping. I can only hold him close, and put my wet cheek on his chest ever so gently, as to not hurt him anymore and dislocate his shoulder. I try to keep my tears to a minimum, be strong and console his broken spirit, trying to encourage that we will find a solution, so that he can have something to look forward to tomorrow; it’s just today is a bad day I keep telling him, convincing him that it will get better, it has to be, right!

In my mind though, I know yesterday was bad too and the day before that, my heart wants to believe that he will get better, that there will be a happily ever after. My mind knows all too well, that it will also be a bad tomorrow. I keep the hope alive, I have to, my husband and daughter needs me to be strong, to be the one who can help them find the answers when they are broken. For now I will just hold him, crying in my arms until no more tears will flow from him, and now it is me sobbing, and it is him consoling me.

Ehlers-Danlos syndrome is a genetic connective tissue disorder that affects the collagen in your body and there is no cure. There is a range of types of Ehlers-Danlos, the one I am most familiar with is the Hypermobility; I am familiar with EDS Hypermobility as my husband, 40 years old, and 14-year-old daughter have this disease. This disease robs you of your life. We are a very private family, but our story needs to be heard to end the suffering for so many other EDS sufferers and their family that share this similar fate. This is my husband’s story.

Paul’s story

He suffers daily from chronic pain and I watch him hobble like an old man because his ankles and knees are so sore. When he gets ready for work he has tears in his eyes; he has to work because if he doesn’t work we will lose our home and we will have to file for bankruptcy. His right knee replacement continues to subluxate, even the metal joint. He wears a left and right custom knee brace to prevent dislocations and arthritic pain, custom ankle braces to prevent the tearing of ligaments and dislocation of his ankles. He suffers with constant dislocation of his shoulders, elbow, TMJ, wrist, and fingers. His heart is also affected, causing my husband’s heart to palpitate and needs to be monitored for dissection of the aorta. He has irritable bowel syndrome; fibromyalgia symptoms; chronic pain and constant medication of narcotic prescription drugs; there is loss of balance; swellings in joints, limbs and eyes; body twitching; and a different reaction to medications as they usually don’t work on EDS patients.

He cannot sleep properly at night due to pain waking him up and having to have the constant awareness that he could dislocate a joint. I wake up in the night to hear him crying in his sleep due to the pain and it breaks my heart. The daily struggle to walk and do things by himself, is a constant battle. My daughter with EDS watches her father deteriorate and asks me if this is what she has to look forward to in her life; I wish I could say for sure it will be different for her.

Ehlers-Danlos needs a voice and we need you to help make some noise so that more research and awareness to EDS. This will help diagnose children earlier and the large amount of people suffering daily that have not been diagnosed with this condition. Early diagnosis helps prevent a lot of damage that is done, especially in the early years.

This is a campaign to help all Ehlers-Danlos sufferers have a voice, and we need you to help. How can you help?

All you have to do is contact the Ellen DeGeneres Show at:

http://ellen.warnerbros.com/show/respond/?PlugID=10

In the section "Tell your story," you can type:

I want to hear more of Paul’s story, living with Ehlers-Danlos, eating you from the inside out. This story needs to be heard.

We can make a difference one voice at a time.