What to Do (Or Not Do) If You Know Someone With Sarcoidosis

 In this special guest post, Tracy Augustine shares her thoughts about meeting a sarcoidosis warrior, learning about the disease, and how best to support a friend or loved one with sarcoidosis.

Sarc-a-what?  That was my reaction when Kerry, my friend and mentor, told me she has Sarcoidosis.  I could barely pronounce the name of her disease and I had no idea what she was talking about.  Kerry and I met at an arthritis conference in 2017.  She radiated positivity that was contagious, and I was instantly drawn to her.  I won’t go into details now, but the following year at the same conference, something in my brain snapped and I decided to follow her around for the entire conference.  I wanted to help her with anything she needed.  Once Kerry realized that I was not a total creep, we started to get to know each other.  She told me she has Sarcoidosis, and I had no clue what she was talking about.

Kerry invited me to her annual Sarcoidosis Walk ‘n’ Roll the following month.  I admit I had to do some research on exactly what this disease was.  I quickly learned that Sarcoidosis is a systemic inflammatory disease that can affect anything from your skin to your organs.  It is called the snowflake disease because no two patients are alike.  At the walk, I met some of the bravest Sarcoidosis Warriors who shared their stories with me.  Some of them needed supplemental oxygen, some needed mobility aides to walk, and some were newly diagnosed.  But the one thing they all had in common was they were all fighters.

That first Sarcoidosis Walk was four years ago.  Since then, Kerry has brought me into her circle of friends and family, which I am so grateful for because I have learned about the challenges that Sarcoidosis patients face.  The following is a list of things I think would help someone living with Sarcoidosis.  Every patient is different, so this is just a starting point.

Things to do if you know someone with Sarcoidosis

1. Check on them often.  Sarcoidosis can be a very isolating disease.  Commit to texting or calling them at least once a week.  I have found that Sarcoidosis patients may not reach out for help easily because they don’t want to feel like a burden.  Remind them they are not a burden and that you genuinely care about them.  If you live with someone who has Sarcoidosis, ask them how you can make their day better.  Do they need help with things around the house?  Ask them what the hardest part of their day is and work together to find a solution to help them.

2. Ask them what you can do to help, and be VERY specific. Are their lungs affected by Sarcoidosis?  Mow the lawn for them or pay for a landscaper.  Are you going to the grocery store?  Ask them what they need from the store and drop it off for them.  The more specific you are, the better.  Saying something like let me know if you need anything isn’t going to cut it.

3. Gift Cards. Don’t wait until a holiday to give them a gift card.  Surprise them and mail them a gift card for their favorite restaurant or store.  Chances are that the Sarcoidosis patient you know is inundated with medical bills.  A surprise gift card can help stretch their budget.

4. Offer to accompany them to medical appointments.  Sometimes you need company just for a second set of ears to help absorb what the doctor is saying.  If the patient you know is doing infusions, offer to come meet them and keep them company during their infusion.

5. Make them laugh.  Sarcoidosis causes all-over body pain.  Laughter gets your endorphins going, which helps with pain relief.  Kerry and I send each other funny memes and Bitmoji’s.  Recommend a funny movie or stand-up special.  My new favorite is The Cabin on Netflix.

6. Ask. This is sort of repeat from number two, but it bears repeating because it is particularly important.  Ask them what they need.  And keep asking until they come up with something.  And if they come up with something, make sure you follow through with it because if you don’t, they likely won’t ask for help again.

Things NOT to do if you know someone with Sarcoidosis

1. Don’t doubt their diagnosis.  Chances are they fought for a proper diagnosis for a long time. Any doubting can be extremely hurtful.

2. Don’t make stupid suggestions.  Examples: have you tried to eliminate gluten?  Have you tried yoga?  My Aunt’s friend’s brother’s cousin had Sarcoidosis and he is cured because he drank apple cider vinegar (insert any random “cure” here).  If any of those things worked, the patient you know would have tried it already.

3.  Don’t say “hey, at least you don’t look sick.”  Sarcoidosis patients work so hard not to look sick.  You have no idea how much effort it takes to function when you are dealing with a complicated disease.  Just because they don’t look sick, doesn’t mean they are okay.

I hope these lists help you connect with the Sarcoidosis patient in your life.  The biggest key is consistency.  Your loved one will learn to rely on you more and open up to you more if you take an active roll in their life.  It is not your job to fix them or fix their disease.  Just be there by their side fighting this disease with them.