How AS Affects the People Around Us: An Interview
I wanted to interview my two closest friends to see how my AS affects them. How do they feel when I’m in a flare-up? I know how I feel, but I’ve never actually asked them how they feel about my health journey. So I decided to ask.
What do you know about AS?
J: I know that you have it. I know that it’s a form of arthritis that affects the spine.
S: AS is a form of arthritis that affects your spine and SI joints. For you, it’s mainly in your SI joints which causes you a lot of pain in your knees and lower back.
Do you know how AS affects me?
S: Your AS affects you to varying degrees. There are days where you’re tired but okay to go out for an errand or two, but when you get home, you’re done for the day. However, during a flare-up, your body is completely in shut down mode and it’s close to impossible for you to even get out of bed. You have some days where you have to force yourself out of bed and other days, you have to let your body completely rest up in bed all day just to feel somewhat okay the next day.
How does my having AS affect you?
J: I wouldn’t say that it really affects me per se, it affects you when I’m with you but it’s no detriment to my life.
S: It mainly affects me when I am with you. For example, our recent trip to Niagara Falls. I didn’t realize how much it was affecting you until you asked that we come back to the hotel for a rest after each time we went out, (e.g., breakfast, butterfly conservatory, etc.) and had to cut our trip short due to your fatigue. I know that I will never fully understand what you’re going through as I do not have AS but I think those moments we shared in Niagara Falls will be one of the rare times that I will come “close” to understanding what it’s like for you to have AS. It definitely opened my eyes as to what a typical day in your life is like.
What are some things you would like to understand better about AS?
J: I would want to learn more about how you think it’s influenced your personality and lifestyle.
S: At the moment, I feel like I’ve learned a great amount about AS through talking to you on a regular basis and keeping up with your articles. However, I would love to know how to spread more awareness and get more involved in the community to help out as much as I can.
How do you feel when you see me in a flare-up?
J: I worry that you miss out on the things you want to do in life because of flare-ups. For example, the concerts we go to together.
S: During one of your flare-ups, I feel several emotions. I feel frustrated/helpless because I know that there’s not much that you or I can do and as much as I try to be there, I know that it’s one of those things that you have to push through and wait out until it’s settled. In addition, I do not fully understand the feeling of a flare-up, so I feel like I want to make sure that I say the right things and support you without saying something and have it come across differently. I feel sad because I see that amount of pain, stress, and frustration it causes you both physically and mentally. As strange as this might sound, sometimes your flare-ups remind me of how you started on this whole journey and as frustrating as it can be for you to have AS and affect every part of your day, you’ve accomplished so much and became such a voice within the community. In a sense, in those times, the flare-ups are like the storm before the sunshine.
Doing this interview has definitely opened my eyes. I didn't know that my disease affected other people so much, but in a way, it's made me happy that my closest friends notice these things that go on in my life. I've learned that my friends notice more about me than I thought, and I appreciate them for that.
Do you use the word disability to describe your AS?