1) Introduce yourself – Who are you, where are you from and a bit about yourself.
My name is Becca, I’m 19 years old! I’m from Southern California but my family and I moved out to Wisconsin about two years ago. I love animals, I have cats, dogs, a snake and a bunny! I hope to get more reptiles and possibly a bird/parrot in the future.
2) What illness/condition/disability do you have? When did your symptoms start? And what were they?
I have Ankylosing Spondylitis (AS), which is a type of arthritis that effects the vertebrae in the spine. Basically, over time your spine grows new bone where there isn’t supposed to be any and that fuses your vertebrae together.
I experienced my first symptoms at about age 12. I would get hip pain, but not too bad, and I would complain to my mom about it. She would say I just needed to exercise more, we had no clue something was wrong with me. My mom first knew something was wrong when we were at a concert and had been standing for a few hours. I got this horrible sharp pain in my hip and I felt like I couldn’t stand. If I sat on the floor, I knew it would be too painful to get back up, so we had to leave before the main performer was even on stage. I got a wheel chair and left with my mom. She called the doctors the next morning to start my diagnosis journey.
3) What was it like getting a diagnosis? Were doctors good/bad? Were you taken seriously? Did it take a long time?
Getting a diagnosis was shocking. I was 13 when I was diagnosed with Juvenile Arthritis (JA). I didn’t know kids could get arthritis and I didn’t know what it meant for my future. Honestly, I don’t remember too much, it’s kind of a blur, but I believe my doctors were good. My mom handled basically everything I just told the doctors what hurt. They were pretty quick to diagnose JA, but I don’t think I got the diagnosis of Ankylosing Spondylitis until a year later.
4) Had you heard of your illness/condition/disability before you were diagnosed?
Neither my mom or I had ever heard of Ankylosing Spondylitis. For the first few years I would constantly forget what the name of my arthritis was called. But as I got older I wanted to know the name of my illness and what it was, so I made an effort to look it up and remember the name.
5) How did you feel when you were told your diagnosis?
I think, as a kid, I was just thinking that it didn’t mean a whole lot. It would just hurt sometimes. I didn’t realize having AS means being on pain medication and giving yourself shots [injections] all the time. Maybe in my head, getting a diagnosis meant it wouldn’t hurt as bad. Like I’ll know what it is and it will help the pain.
6) What treatment did you have? Were there any problems? Did it help?
I started off taking doses of Advil like my doctor told me to, when that wasn’t enough we moved through the list of NSAIDs (non steroid anti inflammatory drugs). We probably tried steroids? I can’t remember. Then I was prescribed Enbrel, which is an injection you give yourself once a week and that helped a ton! I was on it for about four years, then I started to become immune to the medicine. It’s a biologic, so over time your body will get used to the medicine and built up antibodies against it and the medicine won’t work for you. After an MRI showed it wasn’t as effective I was then put on Humira, which was like taking no medicine for me, it was super painful. I don’t know why but the medicine just didn’t work on me. Then I was put on Remicade which I am on now.
7) Did family/friends/colleagues take it seriously? Did they support you?
My family took it seriously. When I told my friends, at first they thought I was joking but then realized yes, their middle school classmate has arthritis. I was, and still am, so lucky to have friends and family that support me, and try their best to understand what living with arthritis is like.
8) How does your illness/condition/disability affect your life?
Having arthritis on top of major depression and anxiety was not fun to deal with. I already had trouble with school because of severe anxiety. Being in pain on top of that basically meant homeschool, which also didn’t go well. I didn’t have any self discipline or desire to learn, I didn’t want to do anything, so I didn’t. So I didn’t graduate with my friends and I’m studying for my GED tests now.
Today it effects me because I can’t work more that 4 hours at a time and I’ve had to change what I want to do, and study, because of my illness. I can’t be a veterinarian because they are on their feet all day and are heavily relied upon to anxious owners. That wouldn’t be fair to the animals, or people. Even though my dream was to be a vet, help all types of animals and open my own vet clinic, I can’t do that. But that’s okay because I can still help animals and there’s other professions I’m interested in that my body can handle.
9) What is something you wish people knew about it?
I really wish people knew that children can have arthritis too. It’s not just for older adults, it can affect everyone. It sucks because it’s degenerative and if someone gets arthritis young, it puts more strain on every aspect of their life, not just the physical pain they feel.
10) Anything else you’d like to share about it or your experience?
I’d like to say that even though having arthritis is tough and painful, it doesn’t define anyone. Arthritis is a small part of someone. It might affect tons of aspects of your life, but it doesn’t define who you are.
If you haven’t already, be sure to check out this article for 16 things you didn’t know about Arthritis.
