A.S. Face 0079: Alison Petykowski

My name is Alison Petykowski and I am 24 years old. I was diagnosed with Juvenile Arthritis when I was 16 years old and, one year before that, Hashimoto’s Thyroid disease. Within the past few years, they have determined it to be Ankylosing Spondylitis. When I was first diagnosed, I was in unbearable pain and scared of my future. I was a junior in high school and could barely walk. My knee had swelled to the size of a grapefruit, and the majority of my joints and back were affected as well. My parents and I made the tough decision to keep me homebound from school. I had tutors come to my house to give me school work and keep me up to date. I had many bad reactions to medications, and the majority of them made me feel worse. In February that year, I entered La Rabida Children’s Hospital in Chicago for about two weeks because my disease had gotten so bad. Walking and doing simple tasks had become nearly impossible. I had intensive physical therapy and new medications were given to me. Even though I left the hospital with the same disease I came in with, the biggest change was my mindset. I learned how to live with this disease. I learned that the more I did not move, the harder it would be to move and my joints would become stiffer and stiffer. I learned that feeling pain when moving was okay, and that it was better to move than to be still all the time. I learned that if you did not force yourself to move, the disease would take hold and create a vicious cycle. With that mindset, as well as new medications (like Enbrel injections), physical therapy, and lots of support from my loved ones, I was able to return to finish my senior year in high school.

In May of 2010, I graduated from Loyola University Chicago with a bachelor’s degree in Criminal Justice, Philosophy and a minor in Women and Gender Studies. Going through college with AS was quite a challenge, but I was able to successfully graduate in 4 years with honors. I lived in a dorm room and then an apartment in the city. I attribute my strength to my parents who would drive me back and forth to school if I needed to spend a weekend home to recuperate, or take me to my rheumatologist. Now one and a half years out of college, my disease is still present, but has definitely calmed down from when I was in high school. Most recently, my mother was diagnosed with AS as well. We now have back to back visits at our rheumatologist! She is my biggest supporter and care taker and I only hope to be hers as well now.

I still have daily pain and some swelling, but for the first time in my life, I am able to work full time in security! The job is physical, but I keep on moving and checking up every month with my rheumatologist. I hope to one day pursue my love of “Social Work” and become a “Police Social Worker.” I would love to help others. In the 7 years that I have had to deal with AS, I feel that the one benefit of this disease, is that I was forced to mature mentally. I feel that living through this, I have an ability to relate and listen to others. I know that any day, my disease could get worse and give me debilitating pain, but I choose not to dwell on that. I keep on moving, living my life, and trying to pursue my dreams.

Illinois United States of America

9 Responses to “A.S. Face 0079: Alison Petykowski”

  1. I follow AS on Facebook because my sister-in-law’s fiance has AS. I saw your photo and instantly recognized you from somewhere but I couldn’t remember where. Then I read your story and it hit me. We had a class together at LUC – but I can’t remember which one. You must have been in your first semester. I was in my last semester. I remember mostly your hair and how jealous I was of it, and your absolutely sweet and bubbly personality. I can’t imagine what this is like for you and I wish it wasn’t so, but you are strong and I can see that personality still shines in that picture. You are the true definition of the Loyola Promise.

    • Hi Jennifer,
      Thank you so much for those kind words! That means so much to hear from a fellow Loyola Alum! I am very touched by your compliments. I wonder which class we had together.
      Thanks so much again for your support. It means the world…

  2. This was really touching Ali. I miss you and hope all is well!

  3. I enjoyed your story Alison! Thank you for sharing it and please please help the police be nicer to people like me – I am sooooo scared of cops – and I am just trying to stay home and fuse quietly. I am glad that someone with AS can help that type of personality have more understanding

    • Thank you for your support! I’m sorry you’ve had bad experiences with the police. There are good and bad eggs in every profession and I know that police get a bad rap sometimes! There are definitely some great ones out there…I’ve met them! Being a police social worker, I would actually be helping people in the community deal with crisis situations, so I actually would not be counseling police officers. I would be working with them; so hopefully I could help the ones that are a bit tougher soften up a little! 🙂

  4. Dear Alison,

    Thank you so much for sharing your story with us. I believe you will help the young people with Ankylosing Spondylitis to make the best of their lives.
    It is my goal to make everyone, someone’s life a little better.
    Sincerely Cookie

    • Dear Cookie, thank you so much for putting this group together and raising awareness! Your efforts have greatly impacted not only me, but my family as well! They love to see the support out there too…thank you very much!

      • Dear Alison,

        It has been my pleasure and honor to do this, and has been such a healing experience for me. I can’t wait till the day that I add Face 1000. Thank you so much for your kindness.

        Sincerely Cookie

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