Ehlers-Danlos Hypermobility or Hypermobility Spectrum Disorders can be complex and confusing at the best of times. What worked yesterday as a strategy for symptoms may not work tomorrow and vice versa.
That said, family and friends can play an immensely helpful role in pain & symptom management simply by being there. The following 5 key pieces of advice were compiled by people with hEDS, HSD, physicians, and relatives on what was most helpful in their overriding mindset on working together.
Believe and Accept their Symptoms
It's not all in their head and they're not all mad (though they may feel like they are at times)...and you may often feel powerless as a caregiver. Some symptoms will be cyclical in nature so that pre-emptive strategies can be put in place to better manage them. Other injuries and symptoms can occur seemingly out of the blue and these are often the most frustrating for all parties involved. Their symptoms may change over time and affect many bodily systems beyond their joints; communication, patience, and simply believing your loved one with HSD or hEDS can go a very long way.
"It's no use going back to yesterday, because I was a different person then"
Encourage without Judgement
This is as much something for people with hEDS or HSD to practice for themselves as it is for their family members. Losing certain functions temporarily or permanently can involve a negative cycle of frustration and judgement on self-worth. It's important to understand that having hEDS or HSD does not make anyone a victim but instead requires a solid dose of self-compassion- that quite frankly all humans should have- and a slightly more creative approach to daily life or long term goals. Good rule of thumb: do what you can when you can and be flexible about your methods but do not give up because of a bad flare.
"The best way out is always through."
- Robert Frost
Don't take it personally
"Your Name Here"