RA Remission, PTSD, and Survivor's Guilt

In June 2020, I experienced the worst RA flare that I have had since December 2018. I couldn’t take care of myself, cook, wash and perform my everyday activities of living. Every joint in my body was swollen. It was difficult to hold my body up against gravity.

My rheumatologist said that it was time to switch biologics. I switched my biologic medicine to Rinvoq, and later that month I introduced medical cannabis for pain control. The combination of Rinvoq and medical cannabis is working well in my system for now.

A remission period with my rheumatoid arthritis

Since July 2020, I have been in what appears to be in a remission period for my RA. I have never felt relief like this before, ever. It is really wonderful. However, I have to be honest: I am quite aware, that on any day, that could change. I try to remain in the present and enjoy the freedom of movement, decreased pain, and my new lease on life. That’s where my post-traumatic stress disorder (PTSD) comes in.

The Mayo Clinic defines PTSD as a mental health condition that’s triggered by a terrifying event or condition.1 In those with autoimmune disorders, we are traumatized by our ever-changing medical conditions. One day feeling great going to bed, and the next day waking up and can’t move. It’s scary and real for us autoimmune warriors.

The PTSD of living with chronic illness

So from July 2020 on, I really was able to enjoy the summer. I had energy and my body was not in severe pain all the time.  I did all sorts of fun activities. However, I just was not myself. I noticed that I was carrying around an intense feeling of guilt. At times, my anxiety was ramped. It just wasn’t making any sense to me.

I spoke with my mental health therapist and a really good friend who is a social worker. They both explained to me that I was going through what is known as survivor’s guilt. Honestly, I was so confused. I thought to myself, “Survivor’s guilt is when someone survives an accident and their loved one does not, right?”

Survivor’s guilt - a symptom of PTSD

They explained that survivor’s guilt is a symptom of PTSD. It is immense feelings of guilt that occur because you have survived something that others did not. In my case, I am having a period of feeling better and my symptoms have diminished. However, so many people that I talk with and even meet on RheumatoidArthritis.net are experiencing difficulties and symptoms in their lives still.

Wanting to highlight different RA experiences

Our rheumatoid arthritis not only affects us physically; it also affects us mentally. Who would think that something good happening in my life could lead to anxiety and immense guilt? However, it is real. I am working on combatting those feelings with my mental health professional.

Has anyone else experienced PTSD or remission?

This all got me to thinking. I wonder if anyone else who is reading this article has felt this same way? I wanted this article to be different than any of my other pieces. I wanted to shine a light on those with RA who are in a period of remission. We here are RheumatoidArthritis.net want to support everyone from a new diagnosis, a bad flare, an okay day, and even remission too.

Please reach out and comment if you have ever suffered from PTSD and/or survivor's guilt in relation to your autoimmune disorder. As always, RheumatoidArthritis.net family, just keep swimming!

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