Living with Ehlers-Danlos Syndrome, Type III – Hypermobile

The Invisible Disease

It’s Nothing Really
What People Say: What It Feels Like:
“If you would just walk for x minutes a day, …” “You’re just lazy! What a slug!”
“If you would just move more, …” “You just want attention.”
“If you would just lose weight, …” “You’re such a pig!”
“If you would just have a positive attitude, …” “You’re bringing this on yourself!”
“You did this, so you should be able to do that.” “It’s all in your head!” “You could do more if you wanted to!”
“We’re all tired, but we still have things to do!” “You’re just a weak person.”
“I have the same symptoms you do; I just don’t talk about it.” “I don’t let pain hold me back!”

Just one of those statements heaps mountains of emotional pain on top of so much physical pain. This is hard to talk about. It is ugly. Many people think and/or say the statements on the left. People with Ehlers-Danlos Syndrome, Type III – Hypermobile (EDS3) feel each statement land like a punch in the gut as they hear the translations on the right.

Inconsistent Symptoms

I am capable of walking. So, why do I insist on only walking distances that are as short as possible? Why do I conserve trips to the mailbox? Why do I spend most of my time in bed or on the couch? Am I just trying to get attention? Am I trying to get out of doing housework? Surely, I must be exaggerating my symptoms.

Kinesiophobia, or “fear of movement,” has been defined as “a state where an individual experiences excessive, irrational, and debilitating fear of physical movement and activity as a result of a feeling of susceptibility to painful injury or re-injury.” I take exception to this term being applied to people with EDS3. On a regular basis this fear is proven to be neither excessive nor irrational. This fear is debilitating, I agree; but I also know for a fact that it is well-founded. The more we do, the more likely we are to experience another injury. I do not need a scientific study to know this to be true. I live it. I engage in what is necessary movement for a single person with EDS3 living alone. I walk outside to throw out household trash and to send and retrieve snail mail. I bring groceries and household purchases into my home and put them away. I prepare my food and drinks in the kitchen, go to the restroom, shower, and process my laundry. Performing these movements are not optional. Yet they terrify me, because in the course of carrying out these activities I experience excruciating pain and injuries, some that are life threatening. My right lower leg, ankle, and foot are collectively the primary offender. Walking normally (for me) and carefully on a flat, even floor can still send me into physical therapy, crying out in pain, and possibly needing a series of surgeries that require round-the-clock care for months. As mentioned elsewhere on this site, I have awakened during surgery more than once, permanently short-circuiting my nervous system. Does this post sound defensive? It is! I am defending my rational fear of pain and re-injury. The simple act of removing my bed coverings from my lower extremities so that I can stand up might send me recoiling in horrible pain. So, do I stay in bed as much as possible? You better believe it!

The Psychological Struggle Is Real

There is actually a scientific reason for all of the above. Possibly even reasons, plural. A report entitled “Psychiatric and Psychological Aspects in the Ehlers–Danlos Syndromes” was published in the American Journal of Medical Genetics in 2017. The study found that approximately 70% of patients with EDS3 had panic disorder and/or agoraphobia compared to only 10% of people without EDS3. Additionally, nearly 62% of EDS3 patients suffered with panic disorders compared with less than 11% among healthy people. That is staggering information!

The Struggle

Some preliminary evidence suggests higher rates of depressive symptoms among EDS3 sufferers, especially when simultaneous anxiety is present. The number of people with EDS3 was markedly greater within the schizophrenic‐panic/phobic group of patients. (Yay! A major impact I missed!) The article further reported that researchers observed structural differences in areas of the brain implicated in emotion regulation in people with joint hypermobility syndrome. The report concluded by recognizing EDS3 as a multisystem condition that is equally an “invisible” condition.

Another study published its report in 2016 under the title, “Psychiatric Disorders in Ehlers-Danlos Syndrome Are Frequent, Diverse and Strongly Associated with Pain,” in Rheumatology International. And, investigating a facet I had not considered, an academic review considered the impact of an invisible disease with unpredictable flare-ups on students forming their identity in the chaotic mix of:

  • “Fatigue and limited physical endurance due to the drain of energy on the person’s body or the presence of chronic pain;
  • Fluctuating capacity to participate in daily activities due to exacerbations and remission of the disease itself;
  • Difficulty concentrating due to emotional factors, medication side effects, or pain;
  • Difficulty with mobility due to inflamed joints, limited nerve function, or decreased strength;
  • Periods of diminished productivity through-out the day; and
  • Frequent absence from class.” [Journal of Postsecondary Education and Disability, 29(4), 407-418]

What Makes EDS3 Invisible

Why do people with EDS3 look “fine,” “healthy,” and relatively “normal,” whatever that is? How do you know they are not hypochondriacs, drug-seekers, attention-seekers, or malingerers? The answer is in the myriad of internal symptoms. Almost every internal bodily system is compromised in EDS3. Obviously, the connective tissue is affected, but that makes up 90% of a person’s body. And not made of connective tissue, the bones are compromised with widespread skeletal pain. Imagine how you would feel if, all at once, the following parts of your body were malfunctioning: joints, tendons, ligaments, muscles, fascia, nerves, skin, head, brain, hearing, eyes, jaws, gums, circulatory system, autonomic nervous system, respiratory system, digestive system, musculoskeletal system, reproductive system, endocrine system, organs, sleep, mental health, emotions, hormones, do you need any others? The only thing you may see on the outside is bruising and scars, possibly saggy skin, but often a brace, a cast, a bandage, and/or a disability aid. Everything else is going on beneath the surface, and it is vicious.

Why can someone with EDS3 go out to lunch one day but be unable to put away the dishes the next? Refer to the previous paragraph. If, by some miracle, that person has enough of a break in symptoms to spare them a few hours of socializing, they will no doubt grab it! Then, they will no doubt pay for it with a resurgence of pain, fatigue, anxiety, nausea, diarrhea, insomnia, weakness, muscle spasms, and any number of other symptoms they tried so hard to ignore for just a little while. Healthy people do not want to be bedridden. Those of us with EDS3 are ridiculously sick, and we do not want to be bedridden! We want to dance and play and pursue our dreams. We want to take care of our loved ones. It is true that we get depressed, but we have logical and biological reasons to do so. Believe us: There is significant illness going on behind the invisible condition.

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