Ehlers-Danlos Syndrome (EDS) is an inherited heterogeneous group of connective tissue disorders. “Heterogeneous,” as pertaining to genetics, is a term used to describe different genetic mechanisms that produce the same or similar phenotypes. A phenotype is an individual’s observable traits, such as their height, eye color, or blood type.
Both EDS and POTS can cause a wide range of physical symptoms as well as psychological symptoms related to mental health.
Postural orthostatic tachycardia syndrome (POTS) is a condition involving the autonomic nervous system (ANS) that affects blood circulation. POTS is a form of orthostatic intolerance, resulting in the development of uncomfortable symptoms that come on after a positional change (i.e.- when standing up from a reclining position), and that may be relieved by sitting or lying back down.
In addition to the neurological physical symptoms associated with EDS & POTS, those suffering from these conditions often struggle with psychological symptoms related to mental health and the emotional impact of suffering from rare conditions such as these.
EDS/POTS & The Central Nervous System
When you are stressed, your body produces steroid hormones called glucocorticoids. That results in a negative effect on many systems throughout your body.
EDS/POTS is linked to a global failure of the central nervous and immune systems. If the CNS fails, it gives rise to a myriad of problems manifesting in all sorts of symptoms. It may affect nerves, muscles, organs, and systems. It may also interfere with the way your body is supposed to function and respond to its environment.
The impact of chronic pain caused by a rare, misunderstood disease
One of the most debilitating and misunderstood symptoms of EDS and POTS is chronic pain. This often leads to feelings of:
As a person who suffers from EDS/POTS, it is likely that you have found that you are not living your ideal life. You have probably consulted a myriad of doctors over time; many of them may not have understood your condition. In addition, the all-consuming daily pain may have robbed you of many of the pleasurable things you once enjoyed (this symptom being more applicable to EDS sufferers). You may sometimes feel as if you are the only person in the world suffering from this awful condition, which very few doctors truly understand.
There are several unique characteristics surrounding EDS/POTS, making it one of the most rare, difficult, challenging, and complicated conditions to treat and to suffer from.
Very few people understand daily chronic pain, not to mention EDS/POTS. In addition, the pain caused by these conditions is largely invisible. Because EDS/POTS sufferers largely appear normal from the outside (referred to as an “invisible illness”), it can be very difficult for those around them to understand their daily suffering.
Few doctors truly understand EDS/POTS. Before patients are first diagnosed, they must navigate an endless maze of specialists; medications that either work ineffectively, not at all, or make them worse; often painful tests; and misdiagnoses.
EDS/POTS patients themselves often do not fully understand all the symptoms that may be associated with their condition. Suffering from digestive issues? Dizziness? Migraines? Do you cringe when a baby cries at the grocery store? Internal thermometer all screwy? Trouble swallowing? Yes. Chances are this laundry list of unpleasant symptoms is most often all connected. When patients don’t understand their symptoms (or their condition) it can lead them to feeling lost, misunderstood, and even paranoid, questioning whether it is all in their head (it’s not).
People who suffer from EDS/POTS may often feel all alone and even ashamed. They feel that some people may think that they just want sympathy or that it’s all in their heads. Since EDS/POTS is invisible in most cases, patients suffering from it feel as if they must prove that they really are suffering. Even if people do believe you, it’s not as if they can ever fully comprehend your daily unrelenting level of suffering. The public has not really been conditioned in accepting chronic pain well. People think severe pain has a cause and a definitive end, like suffering from cancer, not a story without an end.
Often, your family and friends don’t understand. It doesn’t matter how much they love you or how supportive they are. At the end of the day, living with EDS/POTS is like being in a prison all alone. You can see through the bars, but you can’t escape. No one can climb inside your body and feel the pain you suffer every day, or understand how life-robbing it is.
Patients suffering from EDS/POTS often experience intense guilt. There are many reasons for this. They may feel that they are a burden to their families. They feel guilty for not being fun, for interfering with family activities, for being a financial drain, for not wanting to have sex, for being in bed, for always being tired, and for not being able to live fully. The list of guilt-inducing reasons is as long as their arm. The thing about guilt is, it truly doesn’t fix anything. You are alive today because your job here on earth is not done, plain and simple.
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