I’m sorry that life as you knew it—before you got sick—has ended. I know that nothing about your life will ever be the same. From the way you get out of bed and button your jacket, your career, and relationships, all the way down to your self-concept and outlook on life.
Nothing about this is easy, or fair. It is okay to grieve. This is a loss, and it is not a loss many people understand.
However, you have a tribe behind you. We are here, you just have to find us.
When we go through life, we get to wear many hats and carry many different responsibilities. Some of us are workers, parents, wives, husbands, sisters, friends, mentors, leaders, brothers, daughters, sons, coaches, musicians, or artists.
We are capable of many different things before we get sick. Suddenly, all of the time we had to devote to these obligations is needed for doctor appointments, self-care routines, resting, or just figuring out how to do basic life stuff.
All of a sudden, that energy we devoted to our loved ones is spent just trying to get out of bed and survive—we are no longer thriving. Some days all of our energy is spent on our will to live and endure the pain that seems never-ending.
To be given an incurable diagnosis with a prognosis of progression is devastating. And sometimes the treatment can be just as painful and damaging as the disease. Even deadly. When we feel our bodies fighting against us day in and day out, and our symptoms worsening, the light at the end of the tunnel can seem distant.
We are no longer able to hold our relationships as we once did because the strength we had to support our loved ones is now needed to support ourselves. Unfortunately, not everyone is willing to stick around through this. We lose friends and partners. Our relationships with most people, even our children, become strained. We don’t cancel plans or miss special occasions because we don’t care, we are not flaky—we are sick. We are chronically sick.
Day in and day out we experience discomfort. Our days are full of fatigue and symptoms that exhaust us. Every little task is challenging. Things you don’t even think about, like the inability to pick up your daughter when she cries or being intimate with your partner. It’s like watching all the things that make us who we are slip away.
We lose careers, and this might include our insurance. We scratch and claw for resources, but disability can take years. Our medications can cost over $6,000 a month, with side-effects that range from regular nausea to cancer or death. We feel fear because we don’t know if it is worse to suffer or take these medications.
We feel ambition and passion in our minds, but our bodies fight against us. We become lonely and isolated in this. On top of the physical pain and changes, we begin to have internal demons to fight. We are grieving the life and self we once knew, and that is okay. To have your health taken away is unbearably challenging, but losing friends and family on top of it is devastating.
Some days it may feel like an inescapable hell that is destined to worsen. Even when we feel like we cannot take anymore. However, hope is not lost, my warrior.
My warrior friend, I am sorry if they do not understand your grief. I see you, I hear you, and I am here for you. We are here for you, your tribe. Find us.
We face many more obstacles than we should have to face—obstacles that not everyone will understand. Nevertheless, we are strong. We are survivors. We are badass, even when we feel worthless. We are enduring and persevering. We have a strength inside of us that other people will never understand.
So, hold your head high my friend. We must hold on to the light inside, and lean on each other in times of need.
It can get better. We can get better. We can have symptom reduction and find a way to actually live again. It might not look like before, but it can be better.
With the right insurance, doctor, support network, physical therapy, diet, exercise, therapies, medications, and other resources, we may be able to restore some of our quality of life. Or, honestly, it could continue to get worse—the conditions surrounding us, as well as our bodies, may continue to deteriorate. If so, it is up to us to change our mindset and attitudes. To try our hardest to hold onto the little things that provide joy and happiness. We must fight for the things that keep our souls alive and full of fire.
We cannot give up the fight. I know you are tired and defeated, and full of grief, my warrior friend. But lean on us, and let us restore some of your faith. Let us ease some of your pain.
You have a tribe, you are not alone.