The 5 Stages of Living with Chronic Illness

I’ve been meaning to write this for awhile now, as I feel it is very important to talk about. Over the last year or so I have finally turned a corner in my journey of living with endometriosis. I have learned to accept that I have a chronic illness and have learned to live at peace with this disease. I still have hard days, but I no longer feel the feelings of denial, anger, depression, and desperation that I once felt. When living with a chronic illness, I truly believe we all go through the 5 stages of grief. If you think about it, we are grieving our old lives. It takes time, a lot of work, growth, and healing to overcome the grief of chronic illness. This is my take on the 5 stages of living with a chronic illness. Wherever you are at in your journey, know healing will come, it just may look a lot different than the healing you want right now.  

Denial:

When I was first diagnosed with endometriosis, the gynecologist told me this was a chronic disease with no cure and that I would likely need surgery every two years or so (of course we now know that’s not accurate information), but after the diagnostic lap I should feel much better for awhile. All I heard in that discussion was that I would feel better, I didn’t consider the fact that I was just told I have a chronic disease with no cure, I didn’t hear that this wouldn’t be my last surgery, I just heard THIS surgery will make you feel better. I was so desperate to feel like ME again all I could hear was that I was going to instantly be better. I was in complete denial about the reality of living with endometriosis. 

Anger:

Once my pain came back with a vengeance just a few short months after my diagnostic lap and I learned the truth about ablation and care under a general OBGYN, I was so angry. Angry at myself for not doing my research first, angry at the nurse who told me over the phone that my shortness of breath couldn’t be a symptom of endo, and angry at the doctor who failed to properly treat my disease. I was angry that my life didn’t look like it used to and angry that very few people in my life seemed to understand what I was going through. 

Bargaining: 

This one is a tough one. I guess the best way I can describe this stage for me is all the times I spent begging God to take the pain away from me, to make me better. I spent so many painful days/nights sobbing and praying for God to heal me. I also spent a lot of time looking back and wishing I had done things differently and thinking things like, if only I had done my research sooner maybe I wouldn’t be suffering so much. 

Depression:

I went through waves of depression from the time I was diagnosed, to even after I had my successful excision surgery with Dr. Sinervo. I want to highlight my depression after excision because it was the darkest depression I had dealt with. I went into excision surgery with unrealistic expectations to be 100% pain free afterwards. I did have instant relief of some of my pain and symptoms, but I also had some lingering pain and even a new pain that I did not have prior to excision.

I spent a few months in denial of the new pain and couldn’t even find the strength to address it. I was so defeated by the fact that I wasn’t suddenly and miraculously healed. My mental health severely declined over several months, but I kept it all to myself, I didn’t want anyone to know that I wasn’t okay.

Acceptance:

Once I finally came to terms with the fact that excision was not the final step in my healing process, everything changed for me. I started pelvic PT with one of the most amazing and qualified PT’s in my area (thank God for Pam, I would seriously be lost without her!). Within two sessions of PT, that new pain which I learned was likely adhesion pain, was almost completely gone. I still have a few flare ups in that area here and there, but its tolerable and I know how to manage it. I started with weekly sessions of PT and with each session my body started feeling better, eventually I was able to cut down to every other week of PT and now I go once or twice a month. I truly believe physical therapy (with the right provider) is a key step in the healing process.

I also started practicing yoga on a regular basis. Yoga has been extremely beneficial to me, as it really helps stretch out my whole body and has helped strengthen my pelvic floor. I also discussed my depression with my doctor and started taking Cymbalta. I never realized how much anxiety I actually had until I no longer had it all the time! It has taken me almost three years to get where I am today, and I know I will continue healing, but having endometriosis no longer feels like a prison sentence to me. I have come to terms with the fact that I have a chronic illness and I may never be fully free from some of the symptoms and pain associated with this disease. I no longer feel angry or sad about it, instead I feel strong. I have overcome so much with this disease and I have found a way not to let it control my life.

It took so much work mentally and physically to get where I am. I am still dealing with the years of trauma I have suffered because of this disease, but I am learning to move on and move forward. I am no longer afraid to use medical forms of pain management and I have learned to be in synch with my body and know exactly what it needs and when it needs it. I still dread my period every month, but I am always prepared for it and I always get through it. I am no longer in this desperate quest to find complete relief. I know I have done all the right things for myself, and I am so grateful for the relief that excision surgery did give me! I am continuing to explore avenues that will help me feel my best, but I no longer expect a “cure”. Life may not look the way I would ideally like it to, but I am happy and I am at peace with my reality. 

My hope for this post, is that it will help others who are in the midst of their journey and in the different stages of living with chronic disease. We all must walk through each of these stages, but we don’t have to walk them alone. We are here for you through all of your stages, and we won’t stop cheering you on as you get to a place of healing!