The words…remission, inactive and burnt out are all used when talking about sarcoidosis no longer having a direct impact on the body and some people with this disease have very strong feelings about what all these words mean. I’m not one of them.
What I will say is that whatever you want to call it, when the disease decides to suspend itself from reeking havoc on your body, you might technically be in remission or the disease might be inactive or maybe it has burned itself out but that doesn’t necessarily mean you are out of the woods and to me this is what’s important know…not what this phase of the disease is called…that’s all semantics as far as I’m concerned.
When a person has this disease and they are not lucky enough to be asymptomatic, it means the disease is doing some sort of damage. This damage may or may not be long term but for those who suffer a more chronic version of this disease, lasting damage leaves a lasting mark. Learning that you might be in remission is not always as exciting as it sounds. Often you are left with scarred organs that no longer work properly, nerve damage and lasting fatigue, not mention a variety of other health issues sometimes as a direct result of the treatment prescribed to manage the disease. Long term prednisone use can cause diabetes or loss of bone strength, for example. Long term use of methotrexate can actually scar the lungs further or cause liver damage and so on and so on and so on…
Then there is the whole problem of patient abandonment when you are declared “fixed” by an often all too inept medical community, so many of whom lack even the most basic understanding of the lasting after effects of this disease. Many people who are told they are in remission find themselves confused because treatment is suspended and since the doctor has declared them well, they have no where to turn for relief from the sometimes devastating wake of pain, shortness of breath and fatigue they are now left with. Symptoms that they will have to learn to live with for the rest of their lives.
Remission is an interesting word. It does not mean cured but sometimes those of us with this disease get treated like that’s what has happened when in fact our bodies are never ever the same once this disease has stormed through us. From a medical perspective the word remission simply means that symptoms have been reduced. This could mean they have been partially reduced or are entirely gone. Remission is simply an abatement of symptoms. It is a lessening of the severity of symptoms. Yet when a lay person hears this word, they often confuse it with being cured. Unfortunately, so do some doctors when it comes to this disease.
The reality of having a disease like sarcoidosis is that when it is a more chronic version patients may very well experience periods of calm but they are likely to also have flare ups, times when the symptoms of the disease rise up and additional treatment is needed. Because of this, inactive may very well be a better word but regardless of what you call it, this disease rarely leaves those who have had their lives turned upside, feeling confident about the prospects of long term inactivity. Once you have this disease it always hangs over your head…one way or another.