Let's Find Some Positivity Out of This Chronic Illness
Last updated: May 2023
Having a chronic illness of any sort is hard. It's a hard pill to swallow. Receiving a diagnosis or having to live with a chronic illness means this will be a forever. For the rest of your life. It doesn't just go away. It means having to live with symptoms of all kinds every day. It means the "old you" might need to take steps to make changes in your life, in welcoming your disease, in making both of you get a long together. If that makes any sense. It's kind of having someone around that you just don't get along with, who pokes at you little by little. But in this situation, your disease is here to stay and always with you, and you have no choice but to make it work.
Through the diagnosis process and after, it's been hard to stay positive
Every day is an unknown battle, and a lot of times, it feels I am on survival mode trying to just get through minute by minute. It's a big struggle. In the beginning of my health journey, I use to try and find support from my family and friends. But was only left with hurt, disappointment, and lots of anger. I wanted nothing more than my loved ones to understand what I was going through. It was a hard and lonely time.
Even my husband took time to understand
I had to send him articles and also send him to a support group for others living with AS. I would send him some of my articles to show him the inside of AS. As for the rest of my family and friends, it's been hard for them to understand. It's hard to make others see and understand something they haven't been through themselves.
I guess I figured everyone around me would just try and learn about this disease. Would ask more about what it is like to live with it. Don't get me wrong, some will be lucky in that aspect and their loved ones will. For me it has been different. This is where I have learned to find support from others that know what it is like to live with AS. I am thankful for the community here, and through Facebook and Instagram.
The support has been amazing and has helped me through the toughest times, making me feel less alone. It has brought on new friendships. I also have my Instagram account where I try and share everything about my chronic world (@nickyschronicjourney), the good and the bad. It keeps some positivity and helps me find relief in being able to share what I am going through every day. The big purpose of sharing my journey is helping others not feel alone in what they are going through, in any way I can.
I wasn't given the right information
When I got diagnosed, I wasn't given the right information. I had to be my own advocate and do a lot of research to find all about my illness, symptoms and everything that comes with it. It's like a homework assignment!
Every appointment, I make sure to be prepared beforehand with all the questions I have, to make sure I leave that doctor's office without forgetting anything. Once I learned to be my own advocate, I kind of felt like I had graduated from the medical field with all the researching I'd done. I learn so much throughout the groups I join on Facebook.
Learning from other members' experiences with having this disease like what has helped them and what hasn't. I learned so much by joining a Cosentyx group. My doctor wanted to take me off Cosentyx at 3 months of being on it. Now I am going on a year and 7 months on Cosentyx, after reading in the group that Cosentyx works a bit different than other biologics. It takes time and works slowly to see the benefits.
Having a chronic illness has shown me lots
I appreciate all the little things. All the small accomplishments I am able to do, that for some won't be much. But for me it's lots. Like being able to sleep through the night without having to wake up many times from being in pain. Like being able to step outside for some fresh air and take a small walk to the mailbox. Like being able to have energy to get dressed and take a drive to visit family. Like being able to return to work again after being on sick leave. I was on sick leave for almost 3 years. Now I am back remotely, and it's been a year and half still working. It's not easy, but I am doing it. So proud of myself.
It's the little things that I have learned to find some joy and positivity. It's my way to keeping my head up and looking forward to having some hope that things can be better.
Have you ever had to take a leave of absence from work due to your symptoms?
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