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"
- Lewis Carroll
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
Pain is one hell of a filter on communication: It can breed anxiety, loss of sleep, depression, anger, and irrational reactions all of which further compound the issue. Recognizing this alone can prevent a conversation turning into a debate moderated by Pain. Pain is very clearly not a neutral participant and can instead colour everything red, preventing all parties involved from understanding each other.
As with all things in life, open lines of communication require practice largely in self-awareness & honesty, regardless of which role you play.
Communicate about all things related to symptoms & management, impromptu "bonus" limitations, help if required, and anything else that's relevant but don't make it ALL you communicate about. HSD & hEDS are things a person can have but there is no need for them to become the elephant in the room and invade all of your thinky-thinky parts.
"The single biggest problem in communication is the illusion that it has taken place"
- George Bernard Shaw
Don't take it personally
Fatigue, pain, and lack of function can cause the need to cancel or rearrange plans. This isn't personal and isn't a reflection of your importance in their lives. Symptoms can fluctuate very quickly with hEDS or HSD and cause a 180 degree turn in abilities which can be both embarrassing and frustrating. Whatever you do, don't take it personally or jump to conclusions...unless of course they keep bailing on an invite to some midnight skating in which case perhaps they're not being honest that cold & late aren't part of their recipe for success. All jokes aside, continuing to be involved in community as often as possible is a key pillar to anyone's health; someone with hEDS may not always have a say the day-of despite wishing they did.
"A spoon a day isn't nearly enough spoons."
"Your Name Here"
Hypermobility Ehlers-Danlos isn't a character trait nor should it become one. Every patient diagnosed with hEDS or HSD is still the same person as they were prior to diagnosis but now with more answers (and no doubt questions), to their scattered symptoms along with the opportunity to develop clearer management strategies.
It's crucial for those with hEDS and their family members to retain a strong sense of self and avoid adopting an Illness Mentality despite the challenges or disabilities they may face. If you're a caregiver, friend, or family member, encourage them to live as full a life as they are able, operating out of awareness vs fear.
"Today you are you, that is truer than true. There is no one alive that is youer than you."
- Dr. Seuss