Relief, Anger, Grief - Emotions and RA

My feelings about living with rheumatoid arthritis (RA) unfolded over a fairly long time. I have struggled with RA symptoms since childhood.

How my chronic illness journey unfolded

I’ve shared before that my RA symptoms began almost as early as my memories start, but that they were mostly dismissed by physicians as I was growing up.

My joint pain and high SED rates were usually chalked up to growing pains, participating in athletics, and anything else arbitrary that the doctor may mention.

I became so used to ice packs and aspirin being a part of my days that I forgot it wasn’t "normal" to hurt so much.

The fight for a diagnosis and proper treatment

I started fighting harder for a diagnosis and treatment as I grew older, but it wasn’t until I was diagnosed with Crohn’s disease at age 30 that I was eventually appropriately tested and diagnosed with RA.

By this point, I’d gone a whole lifetime without adequate treatment, and my initial concern was just stopping the long-term damage from continuing to accumulate.

Filled with hope post-diagnosis

Finally receiving an accurate diagnosis meant that I could explore specific treatment options and potentially find some symptom relief. This filled me with hope.

For a while, it made me feel like I could finally take the bull by its horns, so to speak, and get ahead of the pain that had been plaguing me for most of my life.

I was flooded with relief

I wrote how it took a few months to find the right medication and, to be honest, it took another year to find the right dose and frequency.

The thing was that shortly after beginning my current medication, I began to feel some reduction in pain. I began to move more easily, and more often. I was flooded with relief.

And then overcome by anger.

Anger due to dismissive physicians

Why did it take physicians so long to take me seriously? Why did it take so many years to get a correct diagnosis?

Could I have avoided debilitating pain for more than a decade if I’d been treated adequately from the start? Yes. Absolutely. Abso-freaking-lutely.

Eventually, I realized that being mad about it couldn’t fix anything. It just consumed me - and I wanted the new and improved Amanda who was not in as much physical pain as previously to go out and live my life louder than I had been doing before.

I worked through my anger until I stumbled over a new feeling - grief.

Understanding chronic illness grief

I could write pages and pages about living with the grief associated with chronic illness.

Instead, I’ll say this. I’ve learned that there is a cycle of grief - much like in any event - and with chronic illness, the feelings and emotions ebb and flow over time.

In some ways, they’re always with us. Sometimes, they hurt less. Sometimes, they take up less space in our heads and our hearts.

Sometimes, it’s easier to go about our daily lives without being bogged down by the grief of rheumatoid arthritis. But other times, it’s absolutely the only thing we can think about.

The grief of having a lifelong chronic illness is heavy and exhausting.

Working through the grief of chronic illness

Here’s what has worked for me in managing this:

• Finding a really good therapist, one who specializes in chronic illness.
• Using every tool presented to me to help me manage my grief, both short-term and long-term
• Being honest with myself about what I’m feeling because burying my grief or trying to ignore it only amplifies the physical disease symptoms I struggle with.

And importantly, knowing that I'm not alone. That this community, and other chronic illness communities, understand the depths of my feelings and the space for my grief.