Grief: A Whirlwind of Emotions

Coming to terms with a new diagnosis like kidney disease can be a life-changing and emotional experience. This can be especially true if you are faced with trying to make a decision about a treatment option such as dialysis or transplant. Through the whirlwind of emotions, there is one that a lot of people with chronic illness talk about and that is grief.

Grief and its stages are messy. Growing up with kidney disease wasn't easy. Looking back on it now, each time I would relapse I would experience the five stages of grief. I'm not trying to say that having a chronic illness is the same as losing someone you love and care about, but in a sense, I was mourning the freedoms and the person that I was before I got sick. I would have to go back on massive doses of prednisone, which took its toll on my body and on my emotional health (as anyone who has ever taken prednisone can relate to). I didn't feel or even LOOK like myself and people weren't always kind. I also wasn't very kind because being on prednisone made me kind of awful to be around. Sometimes I couldn't even stand myself! Every time I would relapse, I would be in denial. I would constantly check my urine for protein and it was always there looming like a dark cloud. I knew what was coming-the heavy doses of steroids. Then I would get angry. I hated everything-my life, people-everything.

Next, I would bargain and ask God to make me better and that I wouldn't ask for anything ever again. Then I would go into a deep depression. I wouldn't leave the house for days or weeks. I didn't want to go anywhere or see anyone. I didn't enjoy anything anymore because I just felt sick all the time and so tired. You have never known tired like kidney disease tired. It's awful. Then would come the acceptance, but with it, the worst depression always remained.

Grief is lonely. When you are diagnosed with an illness or find out that you need to start dialysis, it is sometimes assumed that you will automatically be surrounded by friends and loved ones to support you. This is not always the case. I was truly blessed and fortunate to have a good support network of people when I was working toward a transplant and doing dialysis. I had my husband to help out and take me to appointments or advocate for me when I couldn’t. Not everyone is fortunate to have a support network. It’s a lot to deal with and can be overwhelming for others such as close friends or loved ones to hear of your diagnosis.

Obviously, we know how it feels, but it can also be tough for the people around us to understand our illness and sometimes people don’t always know what to do or how to respond. This is completely normal. I knew that what I was going through was a lot for people to take in. And while I did understand that, it could also be hard for me to reach out to others. It was very lonely and isolating at times. However, it showed me how to be okay in how I was feeling. I could take those experiences and use them to help educate others about my illness and experience. I also learned who I could reach out to for support when I needed it.

There are people in your life who do want to listen and support you. Pay attention to the people who reach out. There are also plenty of online or Facebook support groups out there. If that is something that you’re comfortable with, reach out! People want to listen and relate their stories. There might just be someone who is going through a similar experience.

Grief is necessary. We all know that acceptance is a step in the grieving process. It is important to accept this new change in lifestyle. Whether it is accepting that you may need to rest more often than before or cutting back hours at a job to accommodate our health priorities, it is important to accept that this is a new normal. Allow yourself time to grieve and feel the way that you do. Learn to recognize what you’re feeling and how to be okay with sitting with those emotions. Allow yourself to feel it and cry and do whatever you need to. Sometimes the only way out is to push through.

Navigating through a new diagnosis and chronic illness in’’t easy. I hope that this article helps anyone who is struggling and might need help putting into words what they are feeling. I know it’s cliche, but you are not alone. You are absolutely validated in how you’re feeling. I hope that you reach out and get the support you need.

-Written by Lacy Smith . Lacy was diagnosed with chronic kidney disease at age 8. She is a former dialysis patient and kidney transplant recipient.