Interviewing my Family Members About my AS
Being diagnosed with ankylosing spondylitis (AS) was major event in my life that not only affected me, but also the people in my life. My family has been by my side since the beginning of my diagnosis journey. I decided to ask them a few questions about my AS, to get some insight into what it's like being a family member of someone with AS. Here is what my mom, Karen, my dad, Bruce, and my sister, Alanna, had to say.
What did you think when you first heard that I was diagnosed with ankylosing spondylitis?
Karen (mom): I was with you. I was shocked but not surprised because it had been on the list of possibilities. I had so many other thoughts though — including relief that finally we had an answer for the years of pain, and heartbreak for you that this would never go away, and that it would not be an easy thing for you to deal with.
Bruce (dad): My first thought was: "What the heck is ankylosing spondylitis?" My next thought was: "This isn't fair! Cassia is too young to get a disease like this!" A bit later, I thought: "Why did I give Cassia all that unsolicited - and incorrect - "recovery" advice?"
Alanna (sister): I was really worried, especially because the name of the disease itself is pretty scary. Google searching it was a bad idea because seeing things like “spinal fusion” made me start thinking about worst-case scenarios. I did feel a little bit of relief though to be honest, because I knew you were having awful pain without any answers from doctors. A diagnosis isn’t a solution but at least there’s a name for it now.
Have you learned anything from me having AS or changed any of your views?
Karen: I've learned that you are mentally very tough and strong, and I've learned that you are an adult capable of determining your own care. My eyes have been opened to the world of disability and its issues. I have learned a lot and have more awareness now.
Bruce: I've learned a lot from all the great articles you've written about AS! Not so much about the pathology of AS. But you have given me brief glimpses of what it's like to be in your shoes. I've learned that most people (myself included) are biased against disabled people, both consciously and subconsciously. You've made me aware of everyday activities that able-bodied people can do without a second thought, but present unique challenges to disabled people. Generally, I believe you've helped me gain some empathy toward other people.
Alanna: My eyes are basically opened to a whole new world now. There are so many things that have never even crossed my mind that affect people with physical disabilities. Like, not even once have I had to plan my outings based on whether or not there are places to sit. I think I’m also a lot less ignorant when it comes to invisible disabilities. I realize now that just because someone doesn’t look disabled doesn’t mean they don’t need accommodation, and I’m a little ashamed that it took the diagnosis of a loved one to understand that.
What would you like to tell family members of other people living with AS, who might not be as understanding?
Karen: That's a tough one. You can't make people have empathy. I would tell them to research AS, and understand as much as possible about the disease. They should try to imagine what it must be like to live with constant awful pain; to not be able to sit, stand, or lie down and be in a comfortable position. To listen to the person with AS. To understand that it's not curable and that the best thing you can do is support the person with AS however they want you to support them. Don't think you have thought of something they haven't.
Bruce: Try to listen more and really understand what your relative with AS is going through. Also, hold off on the advice!
Alanna: Have compassion. If you get annoyed that they need to sit down more often or are a bit slower to get moving, just remember that if they had a choice, they would choose not to have chronic pain. Also, don’t try to make them feel better by minimizing their pain or telling them you know what it’s like because you’re on your feet at work all day. When they talk about their pain, it doesn’t mean you’re not allowed to have your own pain or difficulties. You just need to accept that their experience is something that can’t be compared to your own.
Open communication helped my family grow
Hearing my family members’ responses to these questions reminded me that they have all been affected by my diagnosis too and have been learning about it alongside me. It also reaffirmed my knowledge that they are very supportive and compassionate, and are willing to learn, which I am very grateful for. Having open communication about my illness has led to them being so understanding; so, if you have a chronic illness, interviewing the people close to you could help open up an important conversation.
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