Advocating Helps My Mental Health

Last updated: February 2022

My advocating journey began in October 2020 with a fundraiser. A year later I continue to advocate every day. It was the best decision I have ever made. It changed my life. It has helped me so much mentally.

Through advocating, I found a passion for writing and a passion for fighting for myself and others. I’ve always liked helping others, but never gave much time to help myself. Advocating has done both for me.

When I was newly diagnosed

I felt alone and misunderstood. I thought of what the future might hold, or not hold. I found it very had to look on the bright side or be positive. From advocating for myself and becoming involved in support groups and volunteer work, I started seeing the positives to this illness.

At the time, I hated my body and I hate my illness. If you feel like this, I want you to know that this is normal and completely understandable. I am now living with this illness for nearly two years. I have learned to live with it but there are still some days that I hate it. We just need to remind myself to be grateful for our illness as it has made us a strong person, or more to the fact it has made us realize what a strong person we are and always have been. And for the people who have gone through this, we need to advocate for others to help them find their strength.

Physical pain can lead to mental pain

Being in constant pain, diagnosed with a life-long progressive illness and having to trial and error so many medications and still not get them right, really does affect ones mental health. Waking up, not knowing if it will be a good or bad day also affects ones mental health. Becoming sick during a pandemic really worked in my favor. I feel like if this happened when the world was "normal" my mental health would be a lot worse.

From living with this condition, I have learned that I need to advocate and fight for myself, both mentally and physically. No one knows how I am feeling, except the other people with ankylosing spondylitis. Even though we all have AS, we are all on different parts of our journey. We need to help ourselves and others to get through his journey as smoothly as possible.

"You can't be in pain all of the time?"

A lot of people wouldn’t believe that a 23-year-old is in chronic pain all the time. A lot of the time I would get the impression that people might not believe me. This is why we need to advocate and spread awareness.

This is an invisible illness, I can look healthy and feel unhealthy. I had to learn that people can’t understand this. It is more than just pain, it is also chronic fatigue, constantly feeling ill, the feeling that no one understands, the disappointment when I have to cancel plans because my body is not able for it, along with the disappointment from others. The disappointment when I have to trail new drugs again because my body didn’t react well with the last ones. The feeling of the unknown for the future, anxiousness, depression and the list goes on.

Because I have felt like this

I feel it is important to let other know that it is completely "normal" to feel like this and you won’t always feel like this. I feel because I self-advocate and advocate for others, it has helped my mental health.

Mental health and chronic illnesses have their similarities. They are both something you can not physically see, and something that you will have to live the rest of your life with. They are not something that can be "fixed" and you can't "just get better." They are both something that you have to make an effort with and learn how to manage them. Learning how to manage something for the rest of your life, to listen to your body and understand your "triggers" (whether mentally or physically) is mentally exhausting.

One thing I have noticed about chronic illness and mental health illness is the stigmatization around them. It is so important to advocate for both chronic and mental health illness as these illness need to stop being judged, they need to be understood and believed.

How can you advocate for chronic illness? Let's continue to spread awareness!

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