Though I am not a medical professional, I have been forced to learn way more than I want to know about joint hypermobility and its effects on the ole bod. Joint Hypermobility Syndrome (Now referred to as Hypermobility Spectrum Disorders and closely akin to Ehlers Danlos Syndrome) is the overarching illness that caused most of my medical issues, and is linked closely with the rest. Since this is often a misdiagnosed and under-diagnosed condition, I thought I would share my meager explanation of what it feels like to live with joint hypermobility and how it affects my life.
The physicians treating me believe my hypermobility is caused by a connective tissue disorder, likely caused by a defect in my collagen. Collagen acts as a glue that holds the body together, so when it is abnormal, it can cause: stretchy ligaments, extreme fatigue, full or partial dislocations, skin abnormalities, connective tissue tears, an overly-sensitized nervous system, and organ involvement.
I was diagnosed with Joint Hypermobility Syndrome unofficially by a few local physicians, and then officially when I visited the Cleveland Clinic last summer. During the visit to Cleveland, the geneticist checked my wrists’ range of motion and stated, “I don’t know if you can tell, but I am fully dislocating both of your wrists right now.” This sentiment was recently echoed by my long-time physical therapist who, while watching me do band exercises with my arms, stated, “you should probably stop that. Your wrists are making me sad.”
I always knew my joints popped an abnormal amount, but my doctors told me it was normal if it didn’t cause pain. Isn’t it interesting what you can get used to when you think it’s normal? My family called me “Rice Krispies” for a period of time in my youth because they could hear my popping joints sauntering down the hallway or up the stairs well before I was in view. At the time, I didn’t realize that the constant gliding of my joints in and out of socket was causing injury throughout my body. By age 29, I found out I had cartilage or ligament tears in: my right ankle, my left knee, both shoulders, my left hip and one of my fingers. Though most of these have been repaired, several of these issues never healed fully or well, which led to nerve damage or further instability around the injuries.
Now that I am aware of my condition and its comorbidities, I am forced to live with a very cautious attitude toward quick movements. When leaning over, a hip or rib can slip partially out of socket, so I have to bend slowly and attempt to refrain from twisting. I have a few joints in my spine that have the potential to partially dislocate if I move too quickly to grab my seat belt in the car. I am very unlikely to put on a hooded sweatshirt, opting instead for something that zips, so that I don’t partially dislocate my shoulders when raising them above my head. In the most irritating of instances, I can sometimes feel a joint or rib slip out of place while sitting or lying still. I mean, come on. I at least want to be having a good time if I am going to dislocate myself.
The most obvious issue associated with this condition is widespread pain. However, there are several frustrations that go along with an unpredictable condition that go past just the “physical.” These frustrations, for me, include disappointment and guilt. My mom always taught me, “let your yes be yes, and your no be no.” Before my illness became debilitating, I would have considered myself to be true to my word when planning. Now, it doesn’t matter how far in advance I plan an event, because something can dislocate and flare within a few hours of those plans and cause me to cancel.
I have been extremely fortunate and blessed to have family members and friends who remind me that I am valuable to them, whether we are sitting on the couch and chatting, or whether we are out doing elaborate plans that my body can only handle on its best days. A reminder like this happened recently in a conversation with my mother-in-law. I was tearfully apologizing for having to change plans yet again, mentioning that my illnesses have caused me to be a disappointment consistently to friends and family. She teared up as well and said, “I can’t believe that you would ever think I look at you with anything close to disappointment. I am so proud of you.”
My husband also does an awesome job of reminding me that it’s not my fault that I have to cancel, leave from, or miss our plans. He reminds me, “You are not the pain. The pain is the pain and you are Lauren.” This seems like a silly thing to have to remind me, but when chronic illness affects so much of what I do or don’t do, it’s easy to start viewing myself as the problem.
I write this with a level of sensitivity because I know a lot of people within my chronic illness network do not have this type of support As they go about living the best they can, some of them still receive negative feedback from those they need care and encouragement from the most. So, not as a judgment, but a reminder… we never really know what is going on in someone’s life. Those unable to meet for a pricey event may be hanging on by a thread, barely able to pay their bills due to piling medical expenses. Those who make plans and break them last minute may be dealing with a painful condition, but still have hopes to have some fun along the way. The people we aren’t sure should be invited because of the limitations their illness brings, might treasure an invitation just so they don’t feel forgotten. Being remembered and treasured by those we love makes life worth living.
1 Corinthians 13: 4-8
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres. 8 Love never fails.