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0 By Brenda Kimble
The road leading up to your pulmonary fibrosis diagnosis feels like a rollercoaster. Now that you’re over one of the many hills, you have another to conquer: Sharing your diagnosis with your friends.
However, spilling the beans to your friends shouldn’t be a split-second decision. It’s something you should consider carefully, especially if you’re juggling many social circles or you have children to consider.
Here’s the smart way to tell your friends and family about your chronic illness:
Before You Share: 3 Things to Figure Out
Pick your inner circle
You don’t have to tell everyone you know. But it will help you to start building a support system from the very beginning. If you have friends who know you’ve been struggling as you work toward a diagnosis, consider bringing them into the fold. Likewise, if you have friends you know will be too suffocating, nosy or gossipy, leave them out of the loop.
Decide how much you want to tell them
There’s no need to delve into the intricacies of your chronic illness with anyone. Remember, you get to choose how much you share along with whom you share it with. Some loved ones might be privy to more details than others, and that’s okay. No one is entitled to details about your personal life—and your pulmonary fibrosis diagnosis and all that it entails is personal.
Consider everything from symptoms to treatment plans to your medical history before you sit down with your support system. If you’re having trouble staying on-topic or remembering exactly what you want to tell them, create a cheat sheet to bring with you.
Choose the right moment
Is there ever a perfect moment to spill such important information? No. Still, there are some situations that aren’t ideal, like a special event or party focused on someone else. Pick a time and place that gives you privacy. You’ll want a day where you’re not constrained by time limits and a location that’s quiet.
While You Share: 4 Things You Need to be Ready For
Set boundaries
There are hundreds, if not thousands, of chronic illnesses, and pulmonary fibrosis is only one of them. Unless they have personal experience with diseases affecting the respiratory system, they probably won’t know what they should ask. That means they’re probably going to ask questions you don’t want to answer. If they do, tell them that. Saying, “I’m not really comfortable discussing that,” is a perfectly reasonable response.
Let them know who else knows
If you want to keep your diagnosis on the down-low, be up-front about which friends and family members are privy to the information and which aren’t. That way, there won’t be any mistaken conversations you’ll have to deal with later. Also, if there are any specific details you don’t want anyone else to know, be clear about what they are.
Prepare to manage their feelings
“Pulmonary fibrosis” sounds scary. We know you’re likely emotional about your diagnosis, and it’s okay to let those emotions show. But you should be ready for your closest friends to be emotional about it, too. It’s not your job to comfort them or to soothe their fears. Just know to expect it.
Tell them how they can help
The reaction your loved ones will have to news like this will be to extend blanket offers to help in whatever way they can. Don’t be too proud and turn these down! On your worst days, you’ll wish you had taken them up on it when they offered. Try creating a list of things they could do to help, like making you dinners you can freeze, joining you on outings to a local pool for exercise or mowing your lawn.
After You Share: How to Move Forward with Pulmonary Fibrosis
Give them updates
Sharing your diagnosis with your friends is just the beginning. As your journey with pulmonary fibrosis progresses, they’re likely to wonder what’s going on. How are you feeling? What is your doctor saying? Is there a new way they can help you? Let them know that you know they’re interested in your well-being by sending out periodic updates. A casual email, a text, a conversation over lunch—it doesn’t have to be long and involved. You don’t have to spill all the gory details. Just keep the information stream open.
Keep nurturing your relationships
It’s easy to let your pulmonary fibrosis take over your life, but it doesn’t have to. When you’re not feeling well, backing out of a planned event seems like the obvious solution, especially if it’s something you know you’re going to struggle with. If you keep waiting for invitations—and keep cancelling—the invites might stop rolling in.
Instead of continually cancelling, consider shaping your social engagements around activities you enjoy that are also accommodating of your limitations. Be the one to propose an outing that works for you instead of relying on your social circle to fill your calendar.
Expect them to share, too
Chronic illnesses are far more common than you’d guess. The CDC estimates that six in 10 adults in the United States currently live with a chronic illness, and four in 10 live with two or more.
Sharing your diagnosis will deepen the bond you have with your friends and will create a sort of intimacy that might not have been there before. If they haven’t already, your friends will likely tell you more details about their own health struggles and worries. Seeking companionship in chronic illness is common. Be there for each other, listen to each other and commiserate with each other. If you do, you’ll naturally strengthen your relationships with your friends.
Do you have to tell your loved ones about your diagnosis? No. But as you weather the ups and downs of pulmonary fibrosis, your friends and family are going to know something’s up. They’re going to worry. They’re going to pry. If you clue them in, they’ll be able to inform themselves about your condition and help you through both the good days and the bad.
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After all, what else are friends for?
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