Updated: Sep 8
Having a close friend or
family member with a chronic illness can be a new territory for lots of people, especially when these chronic illnesses sneak up on us later on in life. This complete change of lifestyle is incredibly difficult for those going through the change themselves, as well as the people around them. But when done right, both parties can create a synchronous relationship full of support, love, and understanding!
So your best friend, sister, or family member was recently diagnosed with a chronic condition, such as a connective tissue disorder (EDS, HSD, LDS) or an autoimmune disease (lupus, rheumatoid arthritis, celiac disease, MS). What can you do to support them?
Of course in the beginning your friend or loved one is going to be overwhelmed themselves, so this is the best time to do your own independent research. Often when diagnosed later in life, it is more common to be diagnosed with a rarer disease, so it might be hard to find some sources at first. But most conditions have a society or community advocating for it, so look for those organizations! (Think, The Ehlers Danlos Society, The Marfan Foundation, and The Arthritis Foundation). In addition, finding first hand accounts such as blogs or medical studies can help!
As time goes on, you may be able to gage if your friend or family member is open to discussing their medical journey, and during this, the best thing anyone can do is LISTEN and VALIDATE! Many patients with chronic conditions suffer through years of not being listened to or validated by medical professionals, friends, and family. So as a friend, the best thing we can do is embrace them with understanding.
But of course it is going to be natural to have questions about often complex medical conditions. So questions are a given! But always be mindful of how these questions are being asked.
For example, your friend with EDS is complaining about having abdominal pain due to EDS, and they make this known to you. From the outside, many people aren’t aware that EDS and HSD includes GI issues, so this may be confusing at first. So how can we go about this?
This is how we WOULDN’T ask our friend about this: “I thought your disease only had to do with bones?”
But this is how we WOULD ask our friend about this: “From what I’ve found online, for a lot of EDS patients, they primarily have joints and ligaments problems, do you want to tell me about your experience, and can I do anything to help?
There are also a lot of great resources online aimed at helping friends and family navigate a close friend or family member's new chronic diagnosis, and we highly recommend looking them up!
Be sure to consult with your primary care physician or other medical professionals in regards to your medical concerns. This text cannot and should not replace advice from the patient's healthcare professionals. Any person who experiences symptoms or feels that something may be wrong should seek individual professional help for evaluation and/or treatment. This post is for informative purposes only.