For many, a diagnosis of sarcoidosis leaves more questions than answers. Some of these questions need to be answered by a medical professional, which is why we host Q&A sessions with our experts physician panels at FSR Patient Conferences. However, there are questions that doctors can’t answer, about experiences they can’t fully understand. These questions have answers that you can only know if you’ve been personally affected by sarcoidosis. We wanted to answer some of those questions for you, so we rallied our team of 73 awesome FSR Patient Ambassadors to help us out.

A while back we reached out for questions, and you answered! We received over 200 questions from people asking about a variety of topics related to life with sarcoidosis. All of the questions were reviewed and the most commonly asked ones were shared with our ambassadors to weigh in on based on their own experiences.

Since there were such a wide variety of questions, we categorized them into three overarching topics: hard conversations with friends and family, developing a healthy lifestyle, and how to navigate medical expenses. We’ll be tackling each of these three topics in a blog post and sharing them over the course of the next few months, so be sure to check back for more answered questions!

 

Talking About Sarcoidosis with Family and Friends

Dealing with a chronic illness is incredibly difficult. One challenge that many patients face is discussing their disease with their loved ones. The focus of this week’s blog is navigating hard conversations with friends and family while dealing with a chronic illness. Check out the advice below from our FSR Patient Ambassadors and be sure to see who your local ambassador is!

 

What recommendations would you have for relieving a spouse or loved one’s anxiety about life with sarcoidosis?

“Don’t be dismissive, listen to their concerns and letting them feel whatever it is they’re feeling. Also, be honest and upfront about your illness while allowing them to be a part of the process. I hope no one takes this one out of context but, don’t give so much of yourself to worrying about them that you forget about you, create and maintain healthy boundaries.”

 

“Admit that you don’t have all the answers, but that you’ll help your spouse find them. Guide your spouse towards people, organizations, groups, and events that deal with sarcoidosis. That way, they’ll be able to get more answers from people who have been there.”

What recommendations would you make for a pulmonary sarcoidosis patient who has a family member that smokes?

“Smoke of any kind is a high irritant for me. The smokers in my family try to be mindful and not smoke around me but even the smell left on a person after a smoke bothered me. It’s almost impossible not to be around smoke; whether family or someone off the street. When I know I am going to be exposed I often wear a mask. I also found that uses a nasal rinse helps tremendously.”

 

“I don’t have family members who smoke but sometimes they spray things that bother my lungs. They will now move to other areas of the house when using aerosol sprays or colognes. I will remove myself from areas where there is smoking. I also have given the speech of not having a choice in having a lung disease and have occasionally mentioned that you do have a choice and should stop smoking.”

How can I let my family know that I’m pushing myself as hard as I can?

“Having a ‘silent’ illness can be tough for others to understand. Patients with sarcoidosis often hear the phrase, “But you don’t look sick. You look so good.” I think it’s helpful for family and friends to know the facts about the disease and how difficult it can be to treat and manage. I save articles from medical journals, and blogs from sarcoidosis patients that focus on subjects like pain, fatigue, lack of treatment options, the severe co-morbidities like high blood pressure, diabetes, etc.”

 

“I used to drive 25 minutes to work, and then sit in my car in the parking lot for 20 minutes catching my breath before going into the office. Ask your physician or a sarcoidosis ambassador to meet with your family to explain how weak we can get doing everyday things, even while seated.”

 

“Do the best you can to explain this disease and how it affects you, and guide them toward other sites and groups that offer information and support. I’ve learned that it can ‘sink in’ better when they hear it from someone else. Though that can initially feel worse (“why won’t they just believe me?”), the reality is that helps them understand how serious this disease is. A big part of this is their own denial – they don’t want to believe that it’s really that bad, because they don’t want someone they love to suffer that much.”

If, after reading through our patient ambassadors responses you still have questions, feel free to submit them at our Ask the Ambassador page and if you would like to answer similar questions about your own experience, click here!

 

We would like to thank our patient ambassadors for all of their hard work, and specifically thank Robin Thomas, Heidi Junk, Robert Gross, Kerry Wong, Jessica Reid, Lisa McHale, Jackie Ploudre, Deborah Rice, Jeanne Fershleiser, Cathleen Terrano and Sharon Stewart for sharing their advice!