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, how to live a healthier lifestyle, 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!
Making Day-to-Day Life Easier
What do you recommend for relieving a spouse or loved one’s anxiety about life with sarcoidosis?
“Talk to them about this disease! Support them by being a shoulder to cry on. Take them to their doctors appointments and get familiar with their disorder so that they can feel important. There is nothing worse than feeling completely alone when battling this disease.”
“Sometimes the only thing you can do is listen, be there, rub in the rubs, fix the tub, bring the medications, etc.”
“Accept, listen, and be supportive.”
How do you let your family know that you’re pushing yourself as hard as you can?
“Talk to them and let them know because this disorder is a silent disease and we tend to look healthy, although we are not! So talking to your family and close friends and letting them come to your doctors appointments will give them a better idea on whats going on.”
“I’m in California with one of my brothers and most of my family is in the Midwest and east so I just call and give updates how I’m doing. I go through all my symptoms, changes in my diet, exercise, everything. They’re far away so they want to know everything.”
“I just tell them, today that monster and I are battling, only he is winning at this moment, but I’m not giving up my fight.”
How can your friends and family be more supportive of your journey with sarcoidosis?
“By not judging and just being there for us. If we say we don’t feel well, ask what you can do to help instead of questioning if we really don’t feel well. Also, education is key to understanding and that is part of our responsibility as a patient. We have a duty to ourselves and the sarcoidosis community to educate as many people as possible on what this disease is.”
“People with acute illnesses often get a lot of support. When you have a chronic illnesses, like sarcoidosis, you might be sick or disabled for years, even decades. Even so, I want friends to keep inviting me to do things! It helps if they offer support so I can participate as fully as possible. These actions can make difference between isolation for me or me being able to attend social events.”
“I think the biggest, most important thing(s) are to listen, and believe us. Don’t presume to know what we think/feel/want/are able to do – it changes all the time, and it doesn’t always match how we appear. So ask us, believe us, and tell us it’s ok (and mean it).”
“Family can be more helpful by understanding that you are dealing with a serious disease that has no cure. Let them know you need joy, love, and a helping hand throughout your bad days.”
“Understanding that even little things like getting up out of the couch can hurt and be an extreme effort when your joints are inflamed and swollen. Being tired from sarc is a different tiredness. When it hits, even moving an arm takes thought and effort. I would like to be reassured that it’s ok to struggle and it doesn’t diminish me in their eyes.”