A Caregiver-Patient Q and A: Communicating Needs
As someone living with ankylosing spondylitis (previously axial spondyloarthritis), I wanted to chat with my partner, Ben, about our thoughts on communicating around disease and needs. Here we go:
Lisa Marie Basile (LMB): Before I was diagnosed, did you find it hard to understand my needs and feelings? I recall saying things like, "I'm tired" or "I just don't feel well..." but I really didn't have a formal diagnosis yet so you didn't much to go on. I'm wondering how it felt from your perspective.
Ben: I would say that our situation was a little different. Although you didn't have a formal diagnosis, you did have a family history of AS — and had almost self-diagnosed it before your formal diagnosis. So I think my education on AS started within the first couple of weeks of our relationship, really. I didn't realize to what degree, but I knew it would affect you. So when you started explaining symptoms and feelings, I sort of understood.
Getting a diagnosis
Ben: Once you got a formal diagnosis, it stopped it being an idea and it created a level of "confirmation" and reality. In that way, it's almost a blessing. Because then we could snap into gear and begin taking care of it.
LMB:That makes sense! For me, the mystery was gone, but I knew it would be confirmed — even if It took a decade to get radiographic evidence on top of the bloodwork and other symptoms.
But did you know that there thousands of patients living with spouses who don't really believe or "get" it? A lot of patients with AS or axial spondyloarthritis feel like they are living in limbo without radiographic (X-Ray) evidence. I know I did. I felt like people thought I was complaining, rather than living with an actual disease. It made me scared to speak up, but when I did I felt I was a hack.
In some way, these patients feel like they are struggling with having enough "evidence" with which to ask for help and accommodation. What would you say to caregivers or spouses/family members who are not understanding because there's no formal diagnosis yet?
Having others believe your pain
Ben: Unfortunately, without a diagnosis, it takes trust and compassion to know that something is wrong.
Lisa:Right, and people don't just make it up that they're in pain daily!
Ben: There isn't something, as a caregiver, that you can really see or witness (most of the time, aside from psoriasis and gut issues or a hunched forward position — or sleeping a lot). It's mostly an internal issue, it's pain. And you can't really see someone's pain level. Plus, there are stoic people who will deal with an issue far longer all along, and then you have others where even the smallest ailment is something they feel they need to vocalize.
This is where communication comes into play. I think you have to be able to differentiate with your partner when they really need help, versus when they just feel like they want to complain a bit.
LMB: Like me! I love to sort of moan about everything.
Ben: Ha! Like you. But now we communicate better and I know when you really need my help. The diagnosis helps, but so does communicating.
But back to the spouse who doesn't get it: It's about sitting down and understanding the disease — what it does and how it affects people. It's about educating people, using websites like this one, and sharing with friends and family so that they can see, with their own eyes, how the disease affects patients.
It's easy to say the name of a disease that few people know about and then list a few symptoms, but it's more than that. You have to really do the research and understand the disease. You have to read what other patients are going through. But side note: AS shows up differently in everyone, so know that.
Understanding pain levels
LMB:What helps you understand my pain levels?
Ben: What helps me understand your pain levels — when I can't see your pain — goes back to communication. You need to be very clear about what you're feeling. A pain scale is something we use, and we both take it seriously.
LMB:True. I won't say I'm an 8 or 9 pain unless I'm seriously dealing with something. I think those high numbers have a lot of potency in our relationship. I won't say I'm fatigued unless I'm REALLY down and out.
What do you think is a healthy way for me to express needs to you?
Ben: It's all about vocal communication before things go too far so I can help you in all the stages of a flare-up. Then I can be a part of your help from the get-go.
Expressing needs, as a caregiver
LMB:So let's talk a bit about you: How do you communicate your needs with me when you yourself are overwhelmed or overworked? Obviously, there has to be a boundary of some sort when you yourself need a break or some downtime too.
Ben: It's all about my communication, too. There are times when my work stress is overwhelming and I just don't have the bandwidth to be the support system you need. I communicate that to you, and you can reach out to friends or family. But if you need really serious support — like help moving or what not — I do think that trumps my own stress. It's about having deep respect for one another.
Does reading AxSpA patient stories help you in your journey?