12 Ways to Help a Friend With a Rare Illness


Living with a rare illness can be stressful and isolating. Often, those closest to you don’t understand what you’re going through or how to be of real assistance. Although different rare diseases affect people in a variety of ways, what is common among them all is those affected yearn to connect and be understood.

We asked our Erdheim-Chester disease community members to share in what ways a friend or family member can help them cope with living with the ultra-rare blood cancer, Erdheim-Chester disease.

1. “Sit and listen even if you can’t offer any words. There is nothing you can do to take away the disease, but you can do a lot just by being a friend. You are not expected to have any answers.” – Ruthann B.

2. “Help with yard work, housework or home repairs. Those are difficult both physically and financially for the ECD-afflicted family and would be so appreciated! Getting out to do errands is sometimes very difficult, so grabbing that grocery list or that to-do list is another way to help!” – Ally P.

 

3. “Offering to go walking with me and be willing to stop along the way and chat.” – Patty W.

4. “If you have kids and trust your friend with them, having them offer to help watch your kiddos while at doctor appointments, hospital stays or when you just need the rest.” – Amber F.

5. “Call and check on them regularly to make sure they are OK.” – Ruthann B.

6. “The best way to help is to be encouraging without judgment. Many times, the individual just needs to vent about the ways ECD has changed their lives. Not being able to do some of the things you once enjoyed and knowing it will only get worse can change your perspective on life. This often results in a change in personality which frustrates those who don’t understand the nature of the disease. So being a friend who can just encourage and not react when the person is not the nicest to be around would be appreciated.” – Dawn D.

7. “Just going out and doing something ‘normal.’ Sure, things are different, but they can still be done.” – Mi K.

8. “Bring a meal after the patient has been in the hospital or has had a rough week. Or enlist other friends to help by bringing several meals.” – Ruthann B.

9. “Spread information about the disease to as many as possible. The more people know about ECD, the better. This way, not only can you get more informed help from medical professionals and other patients, but you can help save somebody else’s life!” – Amber F.

10. “Think of something you can offer your friend instead of asking them to let you know what they need. This takes the pressure off the [sick] person from having to come up with something. You know best what you can do.” – Ruthann B.

11. “Let your ECD friend vent about their struggles, worries & fears. Tell them never to lose hope and that they’re not alone! Hugs are wonderful, too!” – Ally P.

12. “Enjoy every day to the fullest and be happy with what you can achieve no matter how small.” – Jan P.

Thinkstock photo via lolostock.


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