Life with an invisible illness

Living with an invisible illness can feel like a constant battle. In the beginning, we fight for answers, a diagnosis, and treatment options all in the hopes of getting our life back to normal. We fight to be taken seriously, to be believed. We fight through the unpleasant symptoms and side effects, desperately clinging to anything resembling normal life. As the weeks, months, and years pass we discover that there really is no going back. There is only moving forward.

Life becomes a series of negotiations and trade-offs. One day it is possible to function almost at our pre-illness levels. The next day we are so ill that we must stay in bed to recuperate. We weigh the potential impact of nearly every decision. Days are measured in small increments. When accomplished, everyday tasks become cause for celebration. Nothing is taken for granted anymore.

Then there are the losses we must grieve. They can be so numerous that grieving becomes a way of life. We may lose some of our independence, our mobility, even our mental sharpness. We often lose friends, too. Our journey has followed a different path than our healthy friends and loved ones. We find that there is this part of us that can only be understood by those who have walked a similar path. We have fewer things in common with our old friends because there is such a vast difference in our experiences. Old friends are now strangers. New friends are more like family.

Accepting that change is a process, one we come to on our own terms. Even when we finally accept this new reality, those closest to us might still cling to a thread of hope that the old, healthy person might re-emerge. Coming to terms with our illness may be more challenging for those who must watch from the sidelines. Our loved ones have their own journey to walk. Their grief process can easily be misinterpreted. We might internalized their emotions, believing that we are the target of their anger, frustration, and grief. Honest, open communication is essential to navigate this process. Many close relationships do not survive it.

On good days we fight to feel normal. On bad days we fight through the pain in the hope that it will soon end. In our weakest moments we long for that vibrant, healthy person we used to be. The longer we face our invisible illness, the fainter that image becomes. If we are lucky, we slowly forget what it was to be healthy. We embrace this present reality and find ways to let our true selves shine through. It will never be quite the same. Life has forever changed.

It takes courage, stamina, tenacity, and a lot of hope to fight an invisible illness every day. Only those closest to us ever really see the battle. Everyone else is privileged to be blissfully unaware. We look like everyone else, but we are definitely not the same.