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August 9, 2022

My Personal Thoughts on Grief and Chronic Illness

In my experience, no one really helps you process the grief part associated with a chronic illness in the medical community. As someone who was diagnosed with rheumatoid arthritis at 32, I felt myself woefully unsupported regarding the emotional fallout of my diagnosis. After searching for an answer, for nearly five years, I thought I would find some kind of mental relief and that would be the end of things. I was wrong. Instead, I did what I’m sure many others do, I went online and read about my diagnosis. The words that I read stung like knives, “chronic, debilitating, lifelong, disability.” So, in the process of searching for online support, I found myself returning to counseling. This became my main focus; how do I cope with this?

Luckily, I was able to find a therapist at the time, who was empathetic and seemed to have their own lived experiences. With them I worked on acceptance, not in the sense where I was happy with my diagnosis, but in the sense that I cannot change the fact that I have this condition. My goal was to answer the question: “Ok, I have this thing, now what do I do?” Rather than resisting and focusing on what I could not do, I began to brainstorm and find ways that I could make day to day life bearable. Things I found helpful were: seeking out medication management to control pain, breaking my day into small tasks, learning about my triggers, finding online support and finding ways to communicate my needs to others. While I understand that there are varying degrees of rheumatoid arthritis, I do realize that the depression I have experienced associated with it is pretty common.

Those of us who deal with a chronic illness, are generally used to health care providers who present as tone deaf. That is why I believe representation is important. If more people could see themselves represented across varying life roles, they wouldn’t feel so alone. Does grief relating to a chronic illness ever end? The answer is no, which I know sounds disheartening but hear me out. Grief is part of being human. Processing grief means transforming it into something that doesn’t take your entire focus. It means making peace with it and acknowledging that grief will wax and wane over time. I still have days where I’m angry at my body, but I try to give myself grace. It is a process that I’m still working on and that is alright.

When it comes to grief, we often fall into the cycle of blaming ourselves and asking, “Why am I not over this by now?” I am here to say, let’s find out what is causing you to self-blame and let’s work on helping you find a new sense of “normal” in your daily life. There are people who will listen and support you; and it’s my job as a therapist to help you on your journey. I may have gone to Graduate school, but I have also lived it. I believe it is essential to be vocal about our experiences with disability, because the more things are hidden, the more stigma remains.

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