Receiving a difficult diagnosis can leave you with a mix of complex emotions and saying it out loud to others makes it feel even more real. Sharing your illness with friends, family members, and acquaintances can be as challenging as getting the news yourself in the first place. Therefore, it's essential to learn how to tell people in your circle about your condition so you can start building a network of support. Having people by your side throughout the journey can be both comforting and empowering.
We reached out to our members to ask them to offer some tips on how they shared their difficult news. Read through some common responses:
There is undoubtedly power in the human touch, and having the physical support of your loved ones can give you strength and a deeper connection. A hug or a handhold is often worth more than any words of condolence. Delivering the news in person allows for a back-and-forth dialogue about your diagnosis and treatment options.
Questions can be answered in real-time and with honesty. It is helpful to read your loved one’s non-verbal cues and provide a space for them to express their emotions. If you have children, it can be especially hard to share the news with them. MedlinePlus offers some helpful tips on involving your kids in your diagnosis discussion.
Members also recommend bringing your spouse or best friend to your appointments for additional support.
People have good intentions, but their responses can often add more fuel to the fire. They may try and empathize by talking about their neighbor who recently died from the same condition, say "you don’t even look sick,” or offer their own medical advice. They are generally only trying to help, but remember, you don’t have to share anything you aren’t comfortable with. Be prepared with a phrase like, “I’ll keep that in mind” or “I am not emotionally ready to talk further about this.”
Posting your diagnosis to social media is not right for everyone. Still the outpouring of support can be inspirational and lift your spirits. It also opens a huge cheering section of people wanting the best for you.
You do need to recognize that traditional social media platforms can be a passive support network, though. People may not be willing to do more than provide initial well wishes. It can also open you up to personal questions about your progress and treatment decisions from people you are uncomfortable sharing that information with. Using the newsfeed or reviewing treatments on PatientsLikeMe offers a safe option. Our network of like-minded people dealing with their own chronic conditions understands the complicity of what you are going through physically and emotionally.
Tell Those Closest to You Face-To-Face
There is undoubtedly power in the human touch, and having the physical support of your loved ones can give you strength and a deeper connection. A hug or a handhold is often worth more than any words of condolence. Delivering the news in person allows for a back-and-forth dialogue about your diagnosis and treatment options.
Questions can be answered in real-time and with honesty. It is helpful to read your loved one’s non-verbal cues and provide a space for them to express their emotions. If you have children, it can be especially hard to share the news with them. MedlinePlus offers some helpful tips on involving your kids in your diagnosis discussion.
Members also recommend bringing your spouse or best friend to your appointments for additional support.
“My husband was with me when I was diagnosed and has been amazing. It was good to have him with me at the appointment, so he heard the news too.” – PLM Member: MargieDecker
Write a Script
Your disease is complicated, and there is a lot to remember about your “new normal.” It is easy to get overwhelmed with emotions when you are sharing your news. Jotting down a few bullets with the key points you want to get across can make it easier for you to stay on track.“Write out all of your notes from the conversation with your doctor so you can refer to it whenever you are talking about your next steps with friends and family.” – PLM Member: NanaBanana54You also just learned this information; you are still processing the monumental changes that are about to happen in your life. The American Cancer Society offers some helpful advice in planning out how you share the news – including taking time to reflect on your own feelings. Going through the self-exploration exercise will help you frame your script. Remember, people will be taken back by the information too, and you might end up having to console them in the process. It helps to have your list ready to refer to during the challenging discussion not to forget or miss anything.
Have a “Go-To” Reply Ready
People have good intentions, but their responses can often add more fuel to the fire. They may try and empathize by talking about their neighbor who recently died from the same condition, say "you don’t even look sick,” or offer their own medical advice. They are generally only trying to help, but remember, you don’t have to share anything you aren’t comfortable with. Be prepared with a phrase like, “I’ll keep that in mind” or “I am not emotionally ready to talk further about this.”
“I believe, when someone hears the word ’sick,’ they picture the worst. But I tell everyone, you can ‘look’ sick or ‘look’ great. It doesn’t change how you feel. So, when people say, ‘are you sure you're sick?!’ I simply smile and say, ‘not sick, but dealing with a serious disease.’” – PLM Member: GusprietoYou can control the narrative and end any conversation if it adds stress.
Inform Your Employer, Cautiously
PatientsLikeMe Members have found that being direct with supervisors often helped them receive more understanding and flexibility.“I always tell my supervisor about my issues upfront, sometimes at the interview. They generally understand my struggles when they occur. This way I had given fair warning.” – PLM Member: LnKay1Under the Americans with Disabilities Act, your employer should make accommodations for your condition. This includes time off for appointments, physical modifications to your workspace, and job protection. Just a note: even if the environment seems supportive, it might be best to wait until you have a treatment plan in place so you can give your employer concrete details about your needs. If you would like to know more about your rights and options for sharing your diagnosis with your employer, PLM member Hetlena (TheLupusLiar), created helpful infographics, which apply to people with any medical condition.
Share on Social Media, If You Are Ready
Posting your diagnosis to social media is not right for everyone. Still the outpouring of support can be inspirational and lift your spirits. It also opens a huge cheering section of people wanting the best for you.
You do need to recognize that traditional social media platforms can be a passive support network, though. People may not be willing to do more than provide initial well wishes. It can also open you up to personal questions about your progress and treatment decisions from people you are uncomfortable sharing that information with. Using the newsfeed or reviewing treatments on PatientsLikeMe offers a safe option. Our network of like-minded people dealing with their own chronic conditions understands the complicity of what you are going through physically and emotionally.
“It has been helpful to share experiences with others who have the same difficulties. The anonymity provided is great. If you don't want to share any personal information, you don't have to. We give each other helpful tips on how to get through certain situations. Sometimes we support each other by just being there and sending virtual hugs. My PLM peeps understand what I am going through because they are going through it too.” – PLM Member: LilyBudIf you are grappling with a difficult diagnosis, PatientsLikeMe is here for you! Hear from members like Gloria (GlowLife4) about her journey living with a chronic illness. You don’t have to navigate this alone!