Finding out you have a rare and chronic illness can be extremely hard to deal with. Building a strong support system of loved ones can help make the journey easier. However, it can be extremely difficult to talk about your illness with your loved ones. Here are a few tips to consider that might help make the conversations easier. Be sure to give them time to digest the information, and give them concrete ways they can take action to help show their support!
Educate them on sarcoidosis
Take the time to educate your loved ones on this disease. It may take time for them to understand that you are sick, even though you might not look it. Share information on sarcoidosis, which organs may be affected, what is a typical prognosis, and what treatment might look like. This can help them understand the true severity of sarcoidosis and the impact it could have on your ability to participate in day-to-day activities and family responsibilities.
Tell them how you feel
If you’re feeling scared or sad, let your friends and family members know. It can be incredibly difficult to deal with these feelings, and having a strong support system should be a priority for every patient. Whether it’s made up of family members or friends, sometimes you’ll find an ally in the most unexpected of places. People don’t always know how to react to challenges like chronic illness, but letting them know you need their support can give them a concrete way to show you they care.
Ask them for help when you need it
You might need help along the way- it can be extremely difficult to shoulder the burden of rare disease alone. Maybe you just need an occasional shoulder to cry, or perhaps you’d like an advocate who will accompany you to doctor appointments and help you navigate health insurance. Maybe you have all of that under control, but you want to take action to raise awareness of this disease and recruit a team of friends and family to help you reach your goal.
Let them know your limits
Tell them that you don’t want to miss events like birthdays or family outings, but you might have to. Sarc patients sometimes feel like they cancel more plans than they follow through on. It’s the nature of chronic illness that you won’t always be able to attend every event, and you may have to save your energy for your top priorities. Make sure to take care of yourself first and foremost, and let your family know how your illness might affect your familial responsibilities.
Remember it might be difficult for them too
Everyone is different- some people are more sensitive and might have a hard time accepting that their loved one is sick. Others might not know what to say to you. Set guidelines on if you want to talk about your disease or not, and when. There’s nothing worse than feeling that people are tiptoeing around you, or when someone brings it up at a family gathering when you’d rather focus on enjoying your time together.
Invite them to join you in the fight
Some family members may ask you how they can get involved. If they’d like to learn more about what it’s like living with sarcoidosis, suggest they join you at a support group meeting or join the online Stop Sarcoidosis support community on Inspire. For more information on treatment options and organs affected, and to talk with expert physicians, invite them to join you at an FSR education conference. Or, if they want to help fund research to find a cure for this disease while also raising awareness in your community, ask them to join Team KISS with you!
