Explaining how hEDS/HSD makes you feel, to family, friends and colleagues, can be difficult

In addition to the problems experienced with trying to obtain informed medical care, many people with hypermobile Ehlers-Danlos Syndrome and hypermobility spectrum disorder face challenges at home, at work and in their relationships with others. In particular, they often find it very hard to explain their condition (which may fluctuate daily) to family, friends and colleagues.

 

A person with hEDS/HSD may appear to be fine, especially if they are not using mobility aids. They may be able to do something one day, but find the same task, such as washing their hair or climbing the stairs, almost impossible the next. People who use a wheelchair or crutches some of the time but are able to walk at other times can also find this difficult to explain. They may need to use such mobility aids to ‘manage’ their condition (for example, using a wheelchair post injury, or to manage fatigue - pacing activities and energy expenditure) but, where possible, they try to return to walking as soon as they can in order to avoid deconditioning). To other people the quick changing nature of the condition and/or the switch from 'normal' mobility to mobility aids means the person may  seem to be exaggerating or feigning symptoms.

'Even good friends often only see a person with EDS-H / JHS on a ‘good day’, leading them to think that this is how the person is all of the time. They often have no idea just how bad the bad days really are.' 
(Carrie - livingbendy.blogspot.co.uk)

It can be very difficult for a person without chronic pain to understand what it is like for you.  That does not mean, however, that you cannot educate them, especially if they are people in your life that are extremely important to you.  Choose wisely, it is not worth expending energy trying to educate everyone you come into contact with, or those who just do not seem prepared to listen.  You have more important things on which to use your physical and emotional energy reserves. 

 

Toni Bernhard (www.toniberhard.com) offers the following suggestions for the kind of 'tactful and helpful' questions that could be shown to family, friends and colleagues in order to help educate them on how best to offer help to a  person living with a life-long condition.

“You look so good, but how are you really feeling?”

 

It’s hard for us to respond to comments like, “You look so good” (or the always dreaded, “But you don’t look sick”) because we know that you’re just trying to be nice. If we respond truthfully with, “Thanks, but I feel awful,” you might be embarrassed or think we’re being ungrateful. It would be such a relief to be asked a question that goes to the heart of the matter: “How are you really feeling?”

 

“I’m going to the grocery store, can I pick anything up for you?

 

This is a helpful question, as opposed to, “Call me if there’s anything I can do”  ...We’re unlikely to respond to such an open-ended offer, meaning we won’t call and say, “Can you go to the grocery store and get me some dish soap?” We don’t want to make you go somewhere that you aren’t otherwise going. But if you let us know that you’re already going to the store, that’s a different matter entirely!

In fact, the more specific your offer of help, the better. For example, we’d love to hear an offer to do one of those life tasks that back up for us because we’re not well enough to get to it: take our car for an oil change (we’ll pay for it!); weed in our garden for a bit; do a load of laundry; even clean our refrigerator.

 

 

“How are you holding up? Do we need to stop visiting so you can rest?”

 

What a blessing it would be to hear a visitor offer this “prompt.” I’ve lost count of the number of times my body was telling me to lie down, but I didn’t excuse myself. Even if we’re wilting away or are in bad pain, most of us are unlikely to bring it up ourselves because we don’t want to let you down. But if we know you’re aware of and sensitive to our limitations, we’ll respond honestly.

 

“I miss going out to lunch together,” or “I miss going to the movies with you,” or “I miss going to the mall together.”

 

Speaking personally, I want to hear a heartfelt expression of the way you feel about how things have changed for us. It lets me know that you value our relationship.

 

“Don’t feel bad if you have to cancel our plans at the last minute. I’ll understand.”

 

What a relief this would be to hear! I used to force myself to keep commitments even if I was too sick to leave the house. Invariably, it led to a bad “crash.” I’m much better now about cancelling plans if I have to, but I still feel bad about it unless those plans were made with one of my “it’s okay to cancel” friends. I treasure them.

 

“It must be hard to be sick and in pain all the time,” or “Not being able to work must be so frustrating,” or “I imagine it’s a daily grind to have to pace yourself so carefully.”

 

These comments are examples of “active listening,” a child raising technique I learned when my two kids were young. I wasn’t always as skilful at it as I wanted to be, but the idea is to let your kids know you’ve really heard their concerns by feeding back to them, in your own words, what they’ve said.

For example, if your daughter is afraid of the dark, instead of trying to talk her out of how she’s feeling by saying, “There’s no reason to be afraid of the dark,” or “You’re too old to be afraid of the dark,” you feed back her feelings to her by saying, “The dark is scary to you.” When you actively listen in this way, children feel heard and validated. This makes it easier for them to overcome a fear because they know you’re taking their concern seriously and that you’re trying to understand it from their point of view. We who are chronically ill want to feel heard and validated. We want to know that you understand how we feel. In fact, everybody—sick or not—wants to know that others understand them!

To "active listen," put yourself in another’s shoes and think about how you’d feel if you were in his or her circumstances. Then feed those feelings back by saying, for example, “You must feel sad and disappointed that you can’t go to the party.” I hope all of you have experienced the relief that comes from feeling deeply listened to.

 

“Would you like to hear about this crazy adventure I had yesterday?”

 

You bet I would! Some friends don’t want to tell me about what they’re up to, especially if it’s something exciting. They think that talking about their lives will make me feel bad since I’m so limited in what I can do. But hearing about another’s adventure makes me feel connected to the world and adds real-life adventure to what I often just have to get off the TV.

 

“I hope you’re as well as possible.”

 

To those of us living day-to-day with health challenges, this comment is so spot-on that many of us just use the initials AWAP (as well as possible) when communicating with each other, as in, “I hope you’re AWAP.” Reflecting on this, wouldn’t it be a compassionate comment to make to anyone? Everybody has his or her share of stresses and sorrows—in sickness and in health. And so, my wish for everyone reading this piece is that you’re AWAP.

Awareness and education are the key. If you are trying to better understand what life is like for someone who has hEDS/HSD, please try to really listen when they explain; think how you would like to be treated if you had a chronic, painful and debilitating condition, which is often invisible to the outside world and try to find the time to read the most up-to-date resources and research.  In this way you can make life a little easier for someone you care for who has hEDS/HSD.

 

References:  For references and information sources used within this site, please see 'References' page, under 'Resources and Links' on the main menu.

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