Life with sarcoidosis can be hard and no one knows that better than our patients. Doctors and other medical professionals can answer some questions, which is why we host Q&A sessions. However, there are questions that doctors can’t answer, about experiences they can’t fully understand. This is why we reached out to you, our patients, for advice.
We know that the fight against sarcoidosis can sometimes feel overwhelming, but we want you to know that you are not alone in your experiences. Over the last couple months you gave us advice on hard conversations with friends and family, how to navigate financial concerns that come with sarc, improving quality of life, and how to make the medical system work better for you. We hope that all of this advice, when passed on to other sarc warriors, will help make someone feel less alone in their fight.
Keep checking in throughout the coming months for the more advice from your fellow sarc warriors!
Living a Healthier Lifestyle with Sarcoidosis
Sarcoidosis and Comorbid Conditions
When we reached out to patients, many had other conditions along with sarcoidosis. We took the long list of reported comorbid conditions and condensed it down into the most commonly reported ones. While the below comorbid conditions were popularly diagnosed alongside sarcoidosis, there are several other complications or comorbidities of sarcoidosis that are worth noting, particularly because they are so common and yet so often go undiagnosed. These are what are called “parasarcoidosis syndromes” and they include things like fatigue, small fiber neuropathy, and depression.
Improving Your Quality of Life
Once diagnosed with sarcoidosis, many patients say they changed how they live. Many have made diet modifications like eating less dairy and processed foods. Some patients found food triggers that made them feel worse and removed they from their diet. But, one thing almost all our patients said was, learning to say no and resting when they need to has helped them live a better life.
“I’ve learned that every day is a different day and just because I felt 100% one day doesn’t mean I will the next. But! It is always possible that I could feel better the day after. I take my days as they come, while smiling and making the most out of each day I wake up to see.”
“I’ve learned to except I can’t do the things I used to and I’ve learned to not feel bad when I need to take a nap.”
Sarcoidosis is a rare disease, and that means there is a lot of misinformation and lack of understanding surrounding it. Our patients share below what they wish the people around them knew about this disease.
“That not every case is the same and everyone reacts differently to it. There really is not a lot known about sarcoidosis and many times different doctors will tell you different things.”
“Just because you can’t see my symptoms, that doesn’t mean they aren’t real and that they don’t have a huge impact on my life.”
“You may find that some doctors are not as smart as you expect them to be and may make some mistakes when prescribing drugs. Most doctors learned from the same books and follow the same path of treatment.”
“I wish people would realize it isn’t just a disease of the lung! I’ve been diagnosed for nine years and never had lung involvement. But, I have a very serious and debilitating case.”
“That it exists”