Caretaking, Caregiving, and Care-Needing With RA: All the Same?

Those of us with chronic illness are frequently on the receiving end of caregiving. It is just a fact of the disease, and although it can be difficult to come to terms with, the simple fact of the matter is that if you want to have a decent quality of life, sometimes you simply have to get help.

It took me years myself to learn how to do it, but when I did, it got easier and easier as time went on. But caregiving is not what we are here to talk about today — at least, not the receiving part. What happens when you, a care-needer, also have to become a caregiver yourself?

There is more than 1 way to be a caregiver

I know, it feels like going from care-receiver to caregiver might make the universe implode or time go backwards or something, but it’s actually a situation that many of us who have been dealing with long-term chronic illness end up in at one point or another in our disease progression. Why? Because there is more than 1 way to be a caregiver, and some of you have been doing it already without even knowing it.

Feeling guilt over the future

First, there is the type of caregiving that you are all thinking about: literally taking care of someone else while you are chronically ill with RA or something else yourself. It’s a situation I’m finding myself in right now as a family member is getting older and has been diagnosed with an illness that requires care.

I am learning real fast that my illness just does not have the physical stamina required to take care of someone more or less full-time, so I am having to rely on siblings and others to take some of the load off, but one day, it’s going to reach the point where it gets so bad that I am just not able to do it and keep this person at home with me. I’m dreading that day, and I already feel the guilt for it, and it hasn’t even happened yet! It’s great — I’ve got my regular guilt that comes with RA, and now I’m also feeling pre-guilt for things that haven’t even happened yet. Fantastic.

We already provide care to others

Beyond that, though, I can tell you right now that almost all of you who have dealt with RA or another chronic illness for any prolonged length of time have been a caretaker at 1 time or another. How? Well, think about this... How many times have you had to comfort a friend or relative who was worried about you or upset? How many times have you had to talk down a parent or a spouse who didn’t want to let you do something that you knew you wanted to or even had to? Even beyond that, at a higher level — how many times have you had to convince yourself that you could do something and that you were going to be alright?? I know that answer is definitely more than once. Well, congrats, you are a caretaker now as well as a care receiver.

We are caregivers of ourselves

Look, even if the only person you ever had to reassure was yourself at 2 AM when the mind demons start to creep in and you begin to feel like the pain and fatigue was never going to end, that’s still the heart of caretaking. It’s the reason so many of us who have RA or another chronic illness are natural caregivers — because not only do we know what it’s like to be in pain and be scared and need help, but we have had a lot of practice calming and soothing ourselves when no one else would or could.

A skill we all learn with chronic illness

Caretaking and being taken care of are inextricably linked when you have a chronic illness like RA, even if you may not realize it. Even separating caregiving into taking and giving seems silly to me, as they are so intertwined that I think they should just be considered 1 single thing. Yes, your role may change depending on the day, the hour, or the minute, but when you live with a chronic illness like RA, switching between the 2 seamlessly is a skill we all learn — whether we want to or not. Talk soon.