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Dealing with RA Grief!

There's a lot of grief in having rheumatoid arthritis (RA). We know the pain that RA causes (achy joints, low-grade fevers, tons of co-morbidities, etc.), but what are the elements of grief that come from outside the physical realm of RA? Not necessarily from the symptoms but from the simple fact of even having a chronic illness?

That's what I want to cover today in this article because this is something I've been thinking about a lot lately — mainly because there's been a lot of change in my life and that always, always intersects with having RA.

Grief and isolation

I recently had to move apartments (thankfully in the same complex, but it involved moving up 3 flights of stairs). The problem with this came the next few days after the bulk of moving.

My body was not ready for all of the movement and muscle tension that I would experience from moving all my furniture, which as someone who is 24 years old, is a terrible thing to feel because I normally wouldn't feel as bad if I didn't have RA.

A reminder that my body is different from my peers

This causes me to feel a lot of grief because it reminds me that my body is sick — always — but that it is also so different from my peers who are the same age as me. It feels isolating. It feels like no one — except those who have RA — really understands what I'm feeling or even talking about when discussing a chronic illness.

This is inherently troubling to me because having RA is a big part of who I am and I want to share that story and experience, but it's scary to do so when you feel this overwhelming sense of grief and pain associated with your RA. I'm trying to change this perspective, but doing so has proven cumbersome.

Adjusting my medication schedule

Another change I've experienced is switching my medication schedule. I talked about this before in a previous article, but in that article, I didn't focus on the feelings and thoughts that came with making such a dramatic change.

I have been on Humira now for over 2 years and right at the two-year mark, I switched from 2 shots a month to 1 shot a month. The benefits of this change have been marked/realized: I lost 15 pounds, and I generally felt better/less bloated.

However, it's not an ideal situation, obviously, because I'm still on a biologic that makes me immunocompromised and still deal with RA every day. I have noticed that there's been a slight return to some joint pain and stiffness that wasn't there before, but it's not bad enough to be a cause for concern as my mobility is not affected.

How do I make space for RA?

These are just things I wish I didn't have to think of or constantly consider in life, but I have to in order to live and keep going.

If I can't change the fact that I have RA (and obviously I can't since it's here to stay), then I have to work on making space for RA to exist in some way that is peaceful and generative — as difficult and lofty as that sounds.

How do you understand your grief with RA? What are some ways you mitigate that grief?

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