The Need for Support
Last updated: May 2022
Support is something not everyone is fortunate enough to have. I understand that I am incredibly lucky with the support system I have, and I try to be the best support to others that I can be.
I didn’t always have a great support system. Before I got sick and started posting publicly about my illness, I really didn’t talk much about what I went through. I kept things like my mental health more secretive and only told a few close friends.
Before I was so open
Even when I first developed symptoms of AS, I didn’t talk to many people. In fact, I completely shut out my friends. I didn’t know what was going on inside my body, and it was getting exhausting to tell people I had no idea why I couldn’t come to work. It got tiring, so I just disappeared, sort of.
I was miserable. I had no one to talk to about what I was going through other than my parents. Even if I did talk to someone my age, they didn’t understand what was going on. What 21-year-old just randomly becomes unable to walk? No one could relate to what I was feeling or going through. I was at the doctor’s office constantly, going to physiotherapy, and crying daily because of the excruciating pain I was experiencing.
After my diagnosis, I knew what I had to do
Since I felt so lonely during my year with undiagnosed pain, when I was diagnosed, I wanted to help others. I wanted to share my story and see if anyone out there was going through the same thing I was.
About 6 months after my diagnosis, when I had done a lot of reading, gone to a seminar, and lived more of my life with AS, I started a blog. I started writing posts about what I was going through and what life was like for me as a 22-year-old with arthritis.
I started posting on Instagram
After I started my blog, I also started to become more open on my Instagram page, and before long, it became a page all about my illness. I was connecting with people all over the world with AS at different ages and walks of life. It was amazing! I started to make friends who know exactly what I was going through.
I’ve also connected with people with different chronic illnesses, but who also know what I’m going through. Instagram has become a HUGE part of my support system. I have so many friends on the app that help me when I’m down, and who can relate to me on just about everything I go through. I no longer feel alone.
Communities are everything
Along with the Instagram chronic illness community, this website has helped me tremendously as well. I’m able to read what other people with my disease are going through, comment, and talk to them as well. It’s an amazing community of people who get each other and can relate.
Online communities have become my crutch. I lean on my online friends so much to help me when I’m struggling, and I reach out and help them too. They mean everything to me.
Have you ever had to take a leave of absence from work due to your symptoms?
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