My Partner And I Chat About My Life With AS
I'm always curious about people's relationships when one person has AS — so I decided to do a Q&A with my boyfriend of seven years, Ben. Here, he shares his true feelings about my AS. I've changed nothing he said — and believe me, he was honest!
He's extremely supportive and super understanding of my needs, but because this disease is so fickle (and because I'm pretty sensitive) we always have to be in great communication with one another.
How did learning that I have AS change things for you?
Ben: Not much at first. I knew it was a degenerative autoimmune disease — and that rang a bell for me because I'd heard about them from commercials and such, but in the very beginning, you were pretty much feeling good, so it didn't ring any serious warning bells for me. It wasn't until things got bad that I really had to start thinking about it.
Was there a time when the reality of my AS actually set in for you — versus just knowing I had it? Like, when did it become "real?" And how does it being an invisible illness change things?
Ben: It became very real during one of your first all-consuming flare-ups. You had uveitis and you had to be in a dark room. You couldn't open your eyes, you couldn't really speak, and you were in lots of pain. It was the first moment that I saw that AS could be very debilitating.
I don't actually feel your pain, so I have to go by what you tell me — but I rarely see any physical change. That was the first time I saw a physical change in you. It would almost be easier if you had a physical expression of the pain, but with this, it's the quiet illness that you don't see.
How can you tell that I'm in real pain without seeing it? This is the conundrum of the invisible illness.
Ben: Honestly, for the vast majority of the time, I can't. It's a trust thing. I only really have you to go by. There's a small chance when I can — like when we're walking around a lot and you start to slow down and hobble or need breaks. Or when you're fatigued right after waking up. I can see it in your face. But other than that, we have to communicate.
People in relationships often have a hard time communicating about the disease, pain levels, and support needs. How do you know when I really need help.
Ben: Let's be honest, you like to whine and complain here and there (in general!) — it's your salve, and your way of handling an uncomfortable situation — so because of that, it can be difficult to understand when you're in real need of help versus when you're just sort of needing to vent about not feeling good. The complaining can sometimes mask the truth of whether you're feeling good inside, medium, or really bad. So I always ask you, "Do you really need me right now?"
So that is why we've come up with some ways — like a language — to distinguish. You tell me honestly your pain scale number, and if that number is super high, then I snap into caregiver mode. I put on TV for you, I make sure you're cozy, and I help you relax. But other than that, I just let you express yourself and I listen. I know you will ask me directly when you really need help, too.
And what would you tell other partners about caring for someone with a chronic illness — especially people in the early years after diagnosis?
Ben: I think when your partner gets diagnosed with an incurable disease, you have to get through the stages together — sorrow, research, acceptance.
I try to ensure that it's not a death sentence today, but it might change things tomorrow — and that's ok. And I also remind you that things are always progressing in the medical industry, so you have to have hope for the future. I think it's about staying positive because stress and negativity definitely affect your disease.
This is all very easy for me to say from my position of health, but as a caregiver for someone with this disease, I know that when you're having a tough time with life or work, it has a direct correlation to the flare-ups. I can see that. So I try to stay positive and encourage you to do the same.
That's what I would suggest other caregivers keep in mind.
How do you explain AS to others to get them to understand?
Ben: It's an autoimmune disease — a disease in which the immune system attacks part of the body — and for Lisa, it causes eye problems, digestive issues, spinal and joint pain, and really bad fatigue.
What have you learned over the years about yourself by being a caregiver?
Ben: That I am very, very patient, haha.
But in all seriousness, it shows me how ignorant we all are to these illnesses when we don't live with them. It shows you the real-life struggles people have, every day. And it gives me a deeper understanding of what's important in life. When we get to go on vacation together, for example (and not to get too dark), that really means something — because you never know what life will bring in the future or how often we might be able to do those things.
Do you use the word disability to describe your AS?