Anonymous asked: Congratulations on getting hitched! I wanted to ask you how you dealt with emotional intimacy and chronic pain? Pretty intense subject, I know, but I always wonder how other autoimmune arthritis sufferers are able to open up to and confide in significant others that aren't in pain? Does it get easier over time? Does it just magically become easier when its the right person?
Thank you for taking the time to write me! And you’re right, this is a pretty intense subject, and likely why it isn’t discussed more often in the autoimmune arthritis community.
I’m not going to pretend like I have all the answers on this, because I am still actively learning how to handle Arthur (arthritis) and relationships every single day - and its tough.
Let’s face it, dating is exhausting. I knew to be fair to myself I needed to be wise with my time, and not find myself falling for someone who wouldn’t be there for me. So I began to use Arthur as a litmus test at a pretty young age. When I think about the poor teenage boys I did this to - yeesh, they were saints! When I began dating my now husband, and knew there was a very real spark between us, after a couple days I brought up my health. His response to this big part of my life was, “So?” Which was the right response for me. He neither overlooked it, or allowed it to define the person he was falling for. Lucky. So to some extent, yes, it did become magically easier with him.
BUT, we are both human. We often feel like there is a third person in the room (Arthur), and have to find the right times to acknowledge him and know when not to. After nearly 5 years together, we are still figuring out how to communicate about pain.
I’m at fault when I assume he understands how my pain will affect a multitude of situations, but I need to tell him. He’s not a mind reader. He is optimistic for me, and likes to assume I’m at my best. You know what they say about assuming things…
So, obviously communication is key. Great. Because THAT’S easy! Not. I find myself attempting to shield him from the depth of what I deal with, because I love him and don’t want to see him worry. But this usually backfires, and makes him worry more.
It is only fair to me and my husband to be as open and honest as possible, which means you have to be willing to be vulnerable. The more I reveal, the easier it is. When I bottle it up and end up crying to him, no one wins. Well, in the end, at least it gets out.
We still regularly sit down and have to talk about Arthur. How the pain, the financial stress, the medication side effects affects us both. Because lets be honest, its not just the patient shouldering the stress of the disease.
I try to explain to him how pain makes me react differently in situations, and that this shouldn’t be misconstrued as a lack of caring.
I’ve found the best thing is to try to put everything in relatable terms. Exhaustion is an easy example. When I asked him if he had ever had a flu that made every limb in his body so weak he felt like he couldn’t move them, he said ‘yeah’, well that’s nearly everyday with autoimmune arthritis.
So yes, it is getting easier with time. The more we talk about it, the less we have to talk about it - if that makes sense. I’ve had 20 years to learn and understand this disease, he’s only had 5. Patience and honesty, oh, and a hell of a lot of laughter ;)
Thanks for the great question, and be well! -Britt