What to Do For Your Friend With a Rare Disease


A moment ago, I stood in my kitchen making a cup of coffee. I doubled over in pain. Today the pain is in my stomach, and it has been for a couple of months.

I don’t go on Facebook to whine about the daily pains of living with Ehlers-Danlos Syndrome (EDS). I use Facebook primarily for awareness of EDS and to share about my Christian faith.

Today’s post is about rare disease. One type of EDS is the least rare, but it is rarely diagnosed. That is the hypermobile type, formerly called type 3.

The rest of the EDS types are rare. I have classical type. Today’s stomach issues are most likely due to gastroparesis, which often accompanies EDS. Some sister diseases (and diseases related to or caused by EDS) are: postural orthostatic tachycardia syndrome, mast cell activation disorder, degenerative disc disease, osteoarthritis, basilar invagination, Chiari malformation, tethered cord syndrome, cervical Instability, slipped rib syndrome, costochondritis, irritable bowel syndrome, and the list goes on.

EDS is a basic dysfunction of the connective tissue. The connective tissue in the body involves bones, blood, tendons, and cartilage. Two of the primary symptoms of EDS are dislocations and subluxations (partial dislocations that slip back in on their own). Yet, there is so much more to EDS than these two things. Yes, they are a big deal and a big part of what dealing with EDS entails, but they don’t scratch the surface.

Many patients, like myself, struggle daily. We may have a good day from time to time, but many days we may also experience painful migraines, nausea, difficulty digesting food, lightheadness, tachycardia, rashes, bruising, and so much more.

Please remember that your friend or family member with a rare disease probably struggles a great deal. The smile they paste on their face is often necessary to get them through. They have to “fake it” or they would be miserable. Sometimes that smile makes them feel just a little bit better. Sometimes a few moments with a friend helps relieve some of their anxiety and pain.

Please don’t belittle someone who has chronic pain. Don’t compare it to a healthy person’s occasional aches and pains. It comes across as uncaring and hurtful.

Don’t suggest alternative remedies. Your friend or family member have likely heard them all, and they may smile and nod to keep the peace. Many of us see some of the best doctors in the world for our conditions, and have spoken to hundreds of those with the same illness. We are on top of this.

Whatever you do, please don’t tell them, “God never gives us more than we can handle,” or, “At least you don’t have cancer.” Those sayings are insensitive and show a lack of understanding. Your friend with the rare disease may never “recover” unless they are supernaturally healed, or we have a major scientific breakthrough.

Above all, please be kind. A gentle hug of understanding. An ear that listens to their cries. A patient smile of understanding when they can’t do something with you or for you. A card dropped in the mail to remind them that they are not alone. And if they will allow it, a little help with a meal or basic housework.

Show your love through your actions. That kind of kindness is more rare than you may think.

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