At some point in our life, we’ve all dealt with grief. Grief over a spouse, a parent, or a pet . . . in some way, shape, or form we all have experienced grief. Having a chronic illness diagnosis, like immune thrombocytopenia (ITP), is similar to the stages of grief.  

I’ve learned there are several stages of grief: denial, anger, bargaining, depression, and ultimately, acceptance. When I was diagnosed with ITP, I felt like my life was changing. Being in and out of the hospital, having multiple doctor visits, being prescribed numerous medications, and so many other new things began to define my daily life. I began grieving the life I had before being diagnosed with ITP.  

At first, I was in shock.  How does something like this just happen to a fairly healthy 35-year-old? There were no signs or symptoms—just a lifetime diagnosis. I began to think I would be one of those people who had just one episode, an isolated incident, and never had to worry about it again. That’s when the denial came in. I had myself convinced that while my diagnosis was scary, it wasn’t going to happen to me again and I wasn’t going to have any more issues. Unfortunately, I was wrong.

Once I relapsed and landed back in the hospital, the reality that this wasn’t going away set in. I felt terrible. I felt responsible in some way. Did I do something to cause this? Could I have done something to prevent this? Was I not taking care of myself enough? What could I do to make it go away? Should I eat more leafy green vegetables? 

Maybe I could exercise more, I could take supplements, I could try the Mediterranean diet, or maybe I should just try yoga. I was bargaining with myself in a time of desperation. I was willing to try anything to make this go away. What did I do to myself to bring this on? I was desperately seeking answers, where there weren’t any. I so badly wanted to fix me; I just didn’t know how.  

Stages of grief are illustrated here as an emotional process leading to acceptance. Credit: Getty Images

As I researched more about ITP, I began to understand that it wasn’t my fault. I didn’t do anything to cause it and I couldn’t do anything to fix it. It literally just happened to me and they didn’t know why. This is when the anger set in. How do you not know why? I was mad.

I was mad that my body decided to change my life. I was mad, too, that I couldn’t do anything to help myself, and that doctors didn’t have much knowledge about my condition. The hematologists I was meeting with made me mad as well; they brushed off my symptoms as if they were no big deal. But it was a big deal to me.

My life was never going to be the same again. I learned how to think about things I never did before. I had to be extra careful on my adventures because I now worried constantly whenever random bruises showed up, and I had to get a medical bracelet in case anything happened to me, they would know I was a bleeder. My life was now different and that made me mad.  

Once I got over the mad part, I fell into the sad part. I’m still not sure which was worse. I would say that in the first year, I was in a pretty dark place. I put on a good show though and tried to remain positive with the people around me. Even though inside I was just breaking. 

I got really good at saying I was fine when I really wasn’t. I was depressed. My heart ached that I had to even deal with this. Why couldn’t I just go back to not having a chronic illness? I began isolating myself a lot and just being downright sad. I felt like this was so unfair. I was beyond exhausted all the time. The fatigue was terrible.

Read about how ITP is diagnosed

I dwelled on all the things that were now going to be different. I worried at the very sight of possible petechiae or a nosebleed that lasted longer than it should. My soul grew tired. I was tired of the medications and their horrible side effects, depressed at watching my body change, and experienced anxiety going out in public and sweating so badly from the medication alone. These changes caused me great embarrassment. 

I was slowly losing myself to this ITP illness. Somedays, I would look at myself in the mirror and just cry. Who was I? Who was this person looking back at me? I didn’t even want to see her. My face had puffed up so badly from the steroids, my hair loss was insane, my mood swings were nasty, and you’d barely poke me and I’d get a bruise the size of Texas. There were so many days with so many tears and not a single person in my life could truly understand because they had never actually experienced it. I felt very alone, despite all the support I had.  

It wasn’t until one day when I was talking to my therapist that she asked me, “Have you ever looked up the stages of grief for a chronic illness?” A bit puzzled, I told her I had not. That opened up a whole series of sessions on how similar a chronic illness diagnosis is to the stages of grief.  We worked on this for quite some time. We dug deeper into the denial, bargaining, anger, depression, etc. I learned how to allow myself to feel all the emotions and try to the best of my ability to work them out.  

The fact of the matter was, I have ITP. I am going to have ITP for the rest of my life. The life before ITP was gone. Now it was time to work on accepting this new life I would be living. I have ITP but ITP doesn’t have me. 

The acceptance stage?  We can save that for a later time. For now, I’m content and remain hopeful.