We all learned how to make friends when we were small, and have continued to learn throughout our adult lives. The usual way is proximity, family, shared interests, shared beliefs, or shared experiences.
But what happens when your friend develops a rare disease?
All the Rules of Your Friendship Change.
Your usual way to relate to them disappears, and you're left feeling uncertain of what you should do or say.
Should you make them laugh? Is it too cheesy to send thoughts and prayers? Why do they turn down all your efforts to hang out? Are your experiences and abilities making them feel jealous or uncomfortable? They don't look sick, but they're not getting better.
You may feel a mix of pity, loss, abandonment, anger, or a huge paralyzing uncertainty.
Hang onto your hats. We're in for a ride.
What is a Rare Disease?
"A disease that affects fewer than 200,000 people in the United States. The cause of many rare diseases is unknown, but they are often caused by changes in a person’s genes or chromosomes. Rare diseases are often more difficult to diagnose and treat than the more common diseases." National Cancer Institute
Rare diseases are... rare.
Which means it's hard to relate. And relating to someone is usually the way we make & keep friends.
How Can Getting A Rare Disease Affect Your Friendships?
Getting a rare disease is very isolating. As an adult, you have already established friendships that have survived from childhood or have developed thanks to new hobbies, communities, or responsibilities. People who understand where you're coming from, and who get you.
But now, you're experiencing something so different, and it changes your life so much, how can your friends know what to do for you? They don't know what you need. AND you might not know what you need. This is new to you too. Probably, you're both feeling uncertain and abandoned by your friend.
This is not your fault.
Nobody taught us how to adjust for befriending someone with a rare disease. We don't know how to do Death as a community. And we don't know how to do chronic illness either.
SIDENOTE
Think about a childhood friend. Probably in your neighborhood or school?
What happened if they moved? It was harder to be friends, right?
When your friend develops a rare disease, it's like they moved overnight to another country - or even outerspace. They can still be your friend. But connecting takes more time, coordination, and willingness to meet where & when you can.
How Can I Be A Friend?
The thing is, it's going to take 2 things to make a friendship work. The same two things it takes to build a good marriage, or good business partnership, or star team.
The Ask & The Work
The Ask
If you have a Chronic Illness or Rare Disease, you may feel like all your friends went "poof" after expressing how sorry they were.
They probably said something like, "Let us know if you need anything!"
And then... crickets.
Buckle up, buttercup. Here's the situation. People want to help. They want to be there. They want to pray. They want to give. And they want you to know you're loved.
But they didn't get the manual. There's not really a "HOW TO HELP YOUR BEST FRIEND WHO NEVER ASKS FOR HELP" standard social rule on how to relate. They put the ball in your court.
And that probably feels WAY too overwhelming, right?
You may wonder why no one is showing up. Why they seem disappointed when you can't make the game, or the party, or the after-work event. Don't they know you're sick?
Yeah. They do.
So they're waiting on the ASK from you, and you're waiting on them to show up.
This is friendship 101 - meaning it's hard. Because the basics are the foundation of a good friendship or relationship.
You have to learn the art of The ASK.
Just like passing a ball, the ASK is a learned skill. You have to learn to throw and who to throw it to. It takes practice. It takes trust. & It takes time.
THE ASK ISN'T:
TOO VAGUE: "Could you help me?"
TOO BIG (for 1 person): "Could you pay my medical bills?"
ILLEGAL: "Could you smuggle me into Canada."
WITHOUT TIMEFRAME: "Could you come over sometime?"
PASSIVE AGGRESSIVE: "No one wants to help me, so I guess I'll just do it myself."
THE ASK IS:
SPECIFIC:
Hey, I know we used to hang out on Tuesdays. I'm having trouble with the house stuff. It makes my BP drop to bend down. Do you think you could come over and help me catch up on Laundry while we hang out this Tuesday?
A SMALL TASK OR SERIES:
Would you be willing to pick up my grocery order this Thursday? I'm not able to get away from the house - my feet are numb. (Is this something you could do every week this summer?)
VULNERABLE:
I don't know what I need. But I could use someone to sit by me and take me outta my head. Can you come over this weekend?
A TIMEFRAME:
Do you have 5 hours you can give me this month? I need to apply with some complicated financial aid forms, and my brain fog has been getting really bad. Could we start this week, and see if we can finish it in 2 sessions?
AN INVITATION:
I'm inviting you to my Winterizing PARTY!!!
What: Get Brett's house & yard ready for winter When: This weekend 1pm-6pm (Brats & Burgers to follow) Seriously, would appreciate your help guys. I have been feeling super weak lately, and fell down 2xs this week. Let me know if you and your fam can make it!
The Work
Rare Disease Friendships Require Empathy
You want to help. But THE WORK is more than helping your friend. It starts with you. It starts with understanding, with moving out of pity, shifting meeting places, & creating an action plan.
THE WORK ISN'T:
PITY OR CONDOLANCES: "I'm so sorry you're going through this."
WAITING ON THEM: "Let me know if you need anything."
THE WAY IT WAS: "We've missed you at the gym."
PASSIVE AGGRESSIVE: "I didn't know what you needed, because we never talk anymore, so I got you this gift card to our favorite tapas bar. I'll hold onto it, and we can use it next time we go together."
INVASIVE: "Your garage was full of junk, so I cleaned it out and donated everything I didn't throw. You're welcome!"
ONE WAY: "Yeah, I didn't mention breaking my leg... I didn't want to bother you with my stuff, because I know you're dealing with so much right now."
TOXIC: "Mindful Yoga & a positive attitude are all you need. I'm going to be your accountability partner to make sure you're grateful every day. We'll get you feeling better in no time."
THE WORK IS:
EMPATHY:
"I've been reading up on your disease. I don't know what it feels like, but it sounds like your whole life has changed. What is the best part of your day now? What do you miss the most? I miss that too. What makes you angry? Can I be angry with you? What is something that feels impossible to do today? Can I help with that?"
SHOWING UP: "Can I show up at your house this weekend with pie?"
"Can I come to your house to write next to you?"
"Can I come over and change your SUV's oil this month while we hang out?"
"Can I be your medical appointment buddy when your wife can't get off of work?" "I'm headed to the grocery store, did you need any last-minute things or comfort food I can drop off?"
NEW: "Hey, Gina. I know you can't come to potlucks these days (wow, everything we did was about good food, right?) But I was thinking we could start our own podcast about food we wish we could eat. "I WISH I COULD EAT THAT..." IT WOULD BE EPIC. And I think we could get Jeff and Jorge to be contributors too!"
WITHIN BOUNDARIES: "I know you've been struggling with low Blood Pressure with this disease. Would you be comfortable with me doing your laundry at your house on Saturday mornings?" "You've got a lot of trips to Mayo this month. Can I take care of mowing your yard for you?"
"That sounds like a big project. I can imagine not having the energy to start it when you know you can't finish it in one go. Can I come over this evening and help you get started? You can sit and supervise. Maybe we'll finish it, and maybe we'll get to hang out again next week."
RECIPROCAL:
"Dude, do you have the bandwidth for me to unload today? Because I've got something big to tell you - but it's heavy. So let me know if today's a low-pain day, or if tomorrow would be better."
"Do you have the energy to hang out at your house today? I've been feeling down, and just need someone to sit with me."
"I've been needing your perspective on something. You always help me see what's important. I think it's because you're going through something so big. You are a great listener and a great friend. Thank you."
Empathy Instead of Pity
Using The ASK & The WORK moves both friends out of pity and into empathy. Empathy means "Em = within, Pathy = feeling/suffering" - It means understanding the other person's pain and perspective. When we understand pain points, we see needs, when we see needs, we can offer help & show up. When we respect boundaries and give our friends agency, we shift the focus from what we can't do together, to what new ways we can meet, what new things we can try, and what new ways we can relate to each other.
The focus shifts from the disease to the friendship.
"I feel ya. That sounds hard. What is the hardest bit. Can I help with that this week?"
Creating An Action Plan
When you're practicing THE ASK and THE WORK, coming up with an action plan is key.
Before you come up with the plan, make sure you know the following: The Need: The Timeframe: Is it helpful in the moment? Is it reasonable? Is it flexible? When should you check in to make sure it still works (Day of, week of, hour before?)
Will we need power tools?
SIDENOTE
Now, with the connectivity of our wearable devices, phones, or computers - it's easier to stay connected. But the way we relate to someone online, via text, or in gaming mode, vs. in person has different rules of engagement.
You talk to your friends differently when you hang out in a shared space or shared experience.
How can you recreate that shared space experience with a friend who can't come to your BBQ, date night, or recital? How can you connect them to the experience? When can you use technology to bridge the gaps?
I'm still learning how to be a friend to someone with hATTR. I hope this helps you practice new ways of being a friend with THE ASK & THE WORK.
I know change is hard. You've got this.
♥ Sue
Sources: RRV Hospice, Rare Disease, CSL NHL, National Cancer Institute
******************************************
Living with hATTR
There is no current cure for Amyloidosis. – YET. But in the last 9 years, there are significant advancements in NEW medications that can slow the disease down, and change the story.
We believe that living with hATTR = living with hope.
********************
ABOUT THE AUTHOR
My name is Sue Skavlem.
I'm a visual messenger – not a doctor.*
My husband has Amyloidosis. And it took me a year of googling to understand what an "adult-onset multi-system genetic disease" was.
After learning that "Amyloids have the tensile strength of steel", I came up with the "Accumulating BBs Theory."
My hope is to promote awareness of the disease, update our friends & family on our journey, and create resources other families with hATTR can use.
*Information in this article is meant to inform, but is not medically reviewed, nor should it be used to self-diagnose. Please talk with a medical doctor about free genetic testing if you or a loved one may have hereditary Amyloidosis.
Comments