Supporting a Partner with AxSpA Vol. 2 - Advice for Others

This is volume 2 in a series of articles focusing on supporting loved ones with axial spondyloarthritis.

What advice would you give to others with a spouse who lives with an unpredictable disease like axial spondyloarthritis?

The advice I would give to others with a spouse or family member who lives with an unpredictable disease like AS, is to remain flexible and be empathetic. AS means there are going to be good days and unfortunately bad days too. Flares arise, over-exertion happens, and sometimes pain appears with absolutely no warning. This can cause hiccups in plans, sometimes even long-anticipated plans, and being flexible can be so meaningful to a partner, friend, or family member with AS.

Empathy is essential for the mental, physical, and emotional well-being of a loved one with AS. My partner has AS and her body reacts in unplanned ways that I can see are at times frustrating and disappointing to her because sometimes it means postponing or canceling a plan. I do not have an unpredictable disease so I do not know entirely what emotions come to light when dealing with sporadic, ongoing pain that can throw a wrench in plans. However, it’s important for me to be empathetic and to understand that while she is dealing with the pain I can minimize discomfort and frustration by being a support system that remains flexible in our daily tasks and outings.

What about other family members and friends? What should they be aware of?

I think it’s also important for friends and family to remain aware of the invisibility of unpredictable diseases like AS. Jessica and I recently relocated and now live closer to family than we have in many years. We are extremely excited and feel fortunate to have so many visitors, especially during beautiful summertime weather in the mountains, after living so far from family for as long as we had. But it’s also important that visitors are aware that plans need to be flexible and, on occasion, Jess may need to politely decline to attend an event or outing, depending on her pain and inflammation.

How do you support Jessica during her bad days with AxSpA, or help reduce the severity of those bad days when they come?

I’ll continue with the same example I used above. Jess is fantastic with directions, a truly great navigator and city driver that I am convinced was born with a GPS in her brain. Because of this, she is often the driver and planner of family outings when we have visitors from out-of-town. Recently, I’ve realized adventurous weekends with family while always on the go have led to days of exhaustion following the departure of our guests.

Upon reflection, I’ve realized I need to be a better advocate for minimizing the fatigue that comes with being planner, driver, and host. I can do this by offering to drive, communicating to our guests the importance of planning for rests, minimizing the number of outings we have planned in a weekend, and most importantly checking in with my partner to see how she is feeling and what I can do to alleviate any stressors or pain she may be experiencing.

Knowing Jess, she very much looks forward to visitors, hosting, and will not always vocalize her pain. Instead, she wants to fight through it and spend time out with family rather than staying in or slowing down, even when dealing with intense pain and discomfort.

Ultimately, it all comes down to paying attention and remaining empathetic and flexible. No one expects that you can read the mind of your loved one or intuitively be able to gauge their pain and fatigue levels. But I do encourage you to check in with your loved one, touch base, offer to drive, or cook, or entertain if needed.