When you live in a body that is broken by chronic disease, there are obviously physical challenges but the hardest part of me, living in a body that won’t cooperate, is not the physical discomfort, it’s the emotional strain of knowing I am not the same as I was before sarcoidosis decided to invade my body.
I don’t waste my time asking “why me?”. I’ve lived life long enough to know that “stuff” just happens to all of us at different times and in different ways. Part of living is learning how to cope, so “why me” becomes a wasted question. It’s not worth the time to lament over. That being said, I do grieve who I used to be. I grieve the ease by which I once ran around on the tennis court. I grieve a lost career because I no longer have the stamina or brain power for that kind of success. I grieve a body that does not hurt all the time. I grieve lost friends who have faded away because they didn’t want to get to know the new broken me and I can’t keep up with them.
Life is no longer what it used to be and while living with a chronic health condition, impacts the body, it also taps into the soul and tears at the psyche. Managing the physical strain of sarcoidosis has become the easy part. I try to get enough rest, avoid stress, see my doctors, take my medications, eat a strict healthy diet and get my exercise. It is the emotional stress of this disease that is trickier, harder to pin down and often more elusive. As I have learned what to do to stay physically healthy, I have also learned what to do to stay emotionally healthy and the two actually go hand in hand. If I am not taking care of my body, my mind gets weak. If I am not taking care of my mind, my body gets weak. Taking care of my mental state involves a conscious daily effort to focus on what is good instead of what is bad, on what I have instead of what I have lost.
Emotional management of my disease, requires that I am honest about how I feel even if that honesty is hard to accept. I have to allow for balance between grief and loss and moving on. I’ve had to make room for a new and very different life than I ever expected. I have had to learn to be more comfortable being vulnerable and I have had to learn to accept help from other people. I have had to learn that pride is no always my friend. Sometimes people fail me and I’ve had to learn to understand that it’s because they just cannot understand my experience. I didn’t before I got sick. So, I also practice a lot of forgiveness to keep my emotional state as healthy as I can.
While caring for myself physically with this disease is pretty straight forward, caring for myself emotionally isn’t linear. While it’s okay to feel upset about having this disease, it is not okay to stay stuck in anger. While it is okay to be sad about having this disease, it is not okay to wallow in sorrow. While it is okay to grieve the losses, it is not okay to live in the past. Finding emotional health when you live with a disease like sarcoidosis, is all about finding equilibrium and learning that there are limits in hanging on to emotional pain and that there is freedom in letting it go.
Today, I spend a lot of time focused on grace, gratitude and my overall attitude toward whatever faces me. I can walk in faith, believing I am up for the challenge or, I can shrivel and wither in its wake full of bitterness and anger over the contest ahead of me. I know this is a battle I cannot fight alone or in the dark. So, today I have learned to ask for help when I need it and to say no when I cannot do something. I am learning to slow down and stop if I have to without guilt because I did not ask for this disease and I cannot always control it. My emotional health depends on my ability to accept that my life has changed and to do so without shame for my limits.
There are things in the life worth fighting for and sarcoidosis has taught me that finding happiness and serenity are among them. No matter what befalls me, no matter the size of the mountain the rises ahead of me, I can take the journey one step at a time, afraid but still functioning, in sorrow but with hope that each step will lead to a better place of peace and light. I know with my whole heart and my entire being that my life is made or broken by the choices that I make and while having sarcoidosis is difficult, even life altering, how I respond to the challenges it presents will make all the difference in the new life that am asked to create because of it.