I’m sorry your life, as you knew it before you got sick, has ended, temporarily, or permanently. I know that nothing about your life will ever be the same. From the way you get out of bed and button your jacket, to 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 do have a tribe behind you. We are here, you just have to find us.
When we go through life we wear many hats, and we carry many different responsibilities. However, we only have so many arms, and our shoulders are only so strong. Some of us are workers, parents, wives, husbands, sisters, friends, mentors, leaders, brothers, daughters, sons, coaches, musicians, or artists. We are capable of so many different things before we get sick. All of a sudden 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 skills with our new abilities, or lack there of. All of a sudden all of our energy that 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 just spent on our will to live through this and endure the pain, that at times seems never ending. To be given an incurable diagnosis with a prognoses of progression is devastating. The treatment can be just as painful and damaging as the disease, and 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 so distant. We are no longer able to hold our relationships as we once did, as the strength we had to support our loved ones is needed to support ourselves. Unfortunately, not everyone is willing to stick around through this. We lose friends and partners. Our relationships 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. This means day in and day out. We have long nights full of symptoms that keep us awake. We have long days full of fatigue and symptoms that exhaust us and make every little task challenging. Things you don’t even think about, like the inability to pick up your daughter when she cries for you, or be intimate with your partner. Or watching your ability to perform your favorite hobbies, and passions that make you, you, slip away. We lose careers, that at times includes our insurance. We scratch and claw for resources, yet disability can take years. Our medications can cost over $6,000 a month, and have side effects that range from regular nausea to cancer or death. We feel fear not knowing if it is worse to suffer or take medications. We feel ambition and passion in our minds, yet our bodies fight against us day in and out. We can 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 yourself taken from you is unbearably challenging, but to then lose friends and family and connection on top of it is devastating. Some days it may feel like an inescapable hell, destined to worsen, when we already 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, I am here for you. We are here for you, your tribe. Find us.
We face so many more obstacles than we deserve to face, and obstacles 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. Maybe it does not look like before, but maybe it can be better in some ways. With the right insurance, doctor, support network, combination of physical therapy, diet, exercise, therapy’s, medications and other resources maybe we can begin to restore some of our quality of life. Honestly, maybe it will continue to get worse, maybe the conditions surrounding us as well as our bodies will continue to deteriorate. Then, it is up to us to change our mindset and our attitudes and try our hardest to hold onto the little things that provide joy and happiness. We must fight to hold onto 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 and ease some of your pain. You have a tribe, you are not alone.