Living with a chronic illness like sarcoidosis changes your life in unimaginable ways. You never think something like this will happen to you…until it does. Life inside an unreliable body forces you to live quite differently than you had once thought you would live. It changes your relationships. It changes your career goals. It makes your thinking foggy, slow and dull. It steals your energy and turns you inward. You are physically unable to do things you once thrived doing. You spend more time alone than you ever thought you would. You no longer recognize yourself. You have to be introduced to this new person and you’re not sure you like her at all.
This is what life with a chronic illness is like, especially in the beginning. Everything changes. It’s as if someone beamed you out of the world you know and put you on a planet you’ve never seen before. You don’t know how to find anything and everyone is speaking a foreign language. It’s confusing and forsaken and sometimes downright terrifying. Everything you once knew about yourself changes. You change….in body and mind. You must say goodbye to your old life, your old body and your old self. It feels as if a funeral is in order. But, you don’t get to have a funeral for your old self. You have to grieve quietly because even though you are now saddled with all the life changes that come with a chronic disease, other people don’t notice, don’t care or just don’t understand. It’s a solitary journey and a long goodbye to the life you thought you would have and the life you had planned for yourself.
Grieving is a very big part of living with a chronic illness and while harder in the beginning, it remains a lifelong endeavor. You go through many emotions and you follow the stages of grief as you step further into your new and unfamiliar world. You experience denial. This can’t be happening to you. You ignore your symptoms and the advice of your doctors. You might even skip or cancel doctor appointments. You tell yourself it won’t be that bad, that your life isn’t going to change. As your life does change, because it will change, you start to experience anger. It will change because you are physically unable to keep up, because the well people in your life start treating you differently, because you can’t think as fast as you once could, because you are simply unable to manage life the same way. Simple every day tasks like climbing a staircase or taking a shower require you to rest. You wonder why this is happening to you. You don’t think it is fair that you should be losing so much while other people thrive. Then you panic and start to bargain. You make promises to “do better”, to keep those doctor appointments, to be a nicer person if this would all just stop, to give up a bad habit if it would make this all go away. None of your efforts to trade work and so depression sinks in and this is a long stage.
The stage of depression is really when the reality of your circumstances sink in. You start to realize that this is a forever situation. You come to understand at your core, that your body isn’t going to work correctly anymore, that your brain betrays you with loss and confusion, that your energy and strength have been striped and you are now raw and weak and sad. You feel pathetic. You even hate yourself a little bit. You are resentful and bitter and cannot see a way out of this new and unforgiving world you have been plopped down into. There is no light and no hope because there is no going back to the way things used to be. It’s time to say a final goodbye.
Saying goodbye to who you used to be is the only way to figure who you are going to become but, it’s not easy. Acceptance, the final stage of your grief process, is not a simple task. It comes slowly at first. You realize that if you don’t let go of the past, it’s darkness will swallow you and you will drown in the deep sorrow you feel for what used to be. If you want to survive, you know you cannot do this. You must undertake the long process of saying farewell to your old world, your old body and your old life. It takes courage to say goodbye but as you do, you realize that this is very much like the loss of a loved one. You cannot control that this person is gone so you say goodbye, in your own way and in your own time but you say goodbye so that you too don’t die.
While there is no funeral for this kind of death, you experience your own way of parting from who you used to be. No one else is invited. It’s an extended goodbye and a very private affair. As you go through this process, it becomes bittersweet. You let go piece by piece and bit by bit but as you do, this new world you’ve been forced to live in starts to take shape and it begins to brighten. You start finding your way around. You’re not as lost as you used to be. You realize with that with acceptance, you might be able to build a new life, not the life you thought you’d have, but a life none the less and eventually hope returns.
Living with a chronic illness like sarcoidosis changes your life in unimaginable ways. It’s hard to live with a physically restricting, nearly invisible to the outsider, life long, pervasive, unyielding disease. There will always be fear. There will always be times of sadness. There will always be uncertainty. There will always be those who don’t understand. There will always be moments of loneliness. There will always be doubt. There is no way around these inevitabilities of this new life. They are part of your new world but once you begin to say goodbye to your old life and your old self, once you begin to accept your new reality, you begin to realize that it’s time to rebuild, to redefine who you are and to learn to love this new person emerging. You start to find value and purpose in new places and you start to live again.