Rheumatoid Arthritis (RA), or Rheumatoid Disease (RD) as I prefer to call it, affects approximately 1.5 million Americans. And while this figure represents people who have been diagnosed with this life-changing disease, the disease impacts at least twice as many, and upwards of 3 to 5 times as many people. In other words, the numbers of those impacted by RA or RD is closer to 7 million Americans.
For each person diagnosed with this incurable disease, there are spouses, partners, children, and friends who live with the impact of this disease as well. And for those of us diagnosed with Rheumatoid Arthritis or Rheumatoid Disease, we must remember we are not the only person struggling to make sense of something that makes no sense at all.
Now before you all get your fingers moving in the comments section to remind me how much physical pain you're living with or how many things you can no longer do thanks to this cruel disease, and how the impact on our family and friends is not the same, stay with me.
I agree that unless someone has experienced chronic pain personally, it's damn near impossible to understand the toll it takes, both mentally and physically.
And for the very same reasons we want our loved ones to understand our experience with RA or RD, we also need to be open to understanding what they experience when it comes to loving someone with Rheumatoid Arthritis or chronic illness.
They want to help and don't know how.
How many times have you said to yourself, “Can't they see how hard this is for me, why don't they offer to do anything to help out around here?”
Our spouses, children, and friends are not mind-readers. And contrary to popular belief, just because it's obvious to us that something needs doing, does not mean it's apparent to them.
Chances are, our loved ones don't know the best way to help us. Rather than complaining about how hard things are, or whining about the lack of assistance we receive, we would be better served with a different approach. We need to start asking directly for what we want and need. Whether it's help opening a jar, having someone fold the laundry and put it away, or even cleaning our homes. We must ask for help if and when we need it.
And for those friends who offer to help and you can't think of anything to have them do, try this response:
I don't need anything right now, but I will. When I figure out what it is, I'll let you know.
And then start making a list of all the things you need help with and let people help you.
They are afraid they will hurt us.
They've seen us flinch in pain as we take off our coat or put the dishes away. They've laid silently next to us in bed, hearing every moan as we try to find a comfortable position. They see our pain when we're not paying attention, and they feel their own pain as a result. Yes, our spouses and partners often feel pain at witnessing our physical pain. But it's more than that.
Our loved ones feel helpless to stop our pain, and they don't want to add to it. They may even pull away or cease initiating intimacy. And if we're drowning in uncontrolled pain, we may not even notice until it's been going on for a while. Our partners deserve the same compassion we desire. We're all learning to navigate a tricky disease that is constantly throwing up unexpected roadblocks and detours.
So if your partner hasn't been as physically attentive as you'd like, it's your responsibility to reach out — literally. Tell them you want to snuggle, reach out for their hand, initiate intimacy. And while you're at it, gently tell them they won't hurt you. Then tell them again and show them.
Definitely, show them.
There are so many emotions involved for everyone when dealing with a chronic illness, and this post hasn't even scratched the surface. We'll go in depth on some of the universal emotions in a future post, but today I want to acknowledge the third way our Rheumatoid Arthritis or chronic illness is impacting our spouses and loved ones.
They are grieving over our Rheumatoid Arthritis diagnosis, too.
It doesn't take long after receiving the diagnosis, for grief to take hold. For many of us, a diagnosis of a chronic illness makes us feel like our world is falling apart and forever changed. It feels that way because, well, it's true. And it's also true for our loved ones.
Just as we grieve the “old” us, the healthy version of ourselves we used to know, our partners grieve too. We're all mourning the life we knew and the life we planned to have before Rheumatoid Arthritis entered our reality. Pain changes us. All of us. This pain feeds the grief as a constant reminder of the person and the life that is gone and what has taken its place.
And just like other kinds of grief, we can all move through this grief as well. I don't yet have the answers on how that will look, or what it will take, but I believe understanding we're not the only ones grieving is the first step.
We are not the only ones.
As we face life with a newly diagnosed chronic illness, let's remember we're not the only one affected. Let's focus on what we can do, rather than what we can't and ask for help when we need it. Let your partner know they won't hurt you both with your words and your actions. Refuse to let your disease destroy intimacy. Most importantly, remember that grief doesn't last forever and when you talk openly with your partner about the grief each of you is experiencing, you'll find yourselves moving through it with grace.
If you've been wondering how to open up the dialogue on how your illness is impacting those you love, consider sharing this post with them and begin the conversation. Let me know how it goes.
How does your chronic illness affect your loved ones?