Life with sarcoidosis is an awful lot like life in a tornado zone. It can be sun and blue skies one day and then the next it’s all twisters and destruction. You have to be on guard all the time and you have to keep your storm shelter well stocked just in case of emergency.
If you’re in the path of a tornado, you can expect mayhem and devastation to follow. The same can be said for life with sarcoidosis as it rips through your body blowing the roof off your once solid health.
With sarcoidosis, doctors like to talk about “active” phases of the disease and they use words like “remission” when symptoms are managed with medications. The reality of this disease is even when you’re not in the center of the storm, you are in a constant state of rebuilding yourself because the ruination this disease leaves in it’s path is significant and often unceasingly cruel.
The damage caused by sarcoidosis is brutal. It is literally unnerving because it destroys nerves. It also leave scars on the inside and the outside of your body, most of which cannot be fully healed.
While a tornado might tear your house off its foundation, sarcoidosis rips through your life in much the same way. It changes everything, leaving the life and world you once found comfort in, unrecognizable, leaving you feeling forever vandalized.
Tornadoes can be unpredictable. They can start out in one direction but a swift gust of wind and they move just a enough to go from being potentially threatening to life altering. Sarcoidosis is the same in the path that it takes through your body and how it responds to available treatments. There is no way to stop a tornado and there is no known cause or cure for sarcoidosis. If you happen to find yourself in the path of either of these things, all you can really do is brace yourself and hold on tight to wait it out.
Once it passes, you assess the damage and begin to rebuild but even as you do, you know it isn’t over…because another storm will be coming through and you’ll find yourself once again at its mercy, just trying to survive it.