The Grief That Comes With AS
I’m in a state of grief every single day. Not many people know that when you develop a chronic illness, grief comes along with that. And so do the stages of grief.
But instead of the grief getting easier, it’s more of a grief cycle that can happen at any time.
When I was first diagnosed, I was in a state of denial for a few months. “This can’t be real, I’m not REALLY sick forever, right?” was a constant thought of mine.
I didn’t want to believe it. Life was overwhelming and scary. I cried a lot. I didn’t want my diagnosis to be real. As a 22-year-old, hearing that your life was completely altered forever was a big deal. I mean, hearing that at any age is a big deal, too.
Of course, anger came with the diagnosis. “Why me?” was always in my mind. Sometimes it still is. It’s hard to understand what’s going on when we flare or when things just don’t feel right, which is pretty much always.
I’ve since come to the conclusion that everything happens for a reason, and the "why" question is because I was supposed to find my love for writing, and this was just how.
I still get angry sometimes though. Anger is natural. Let it happen and let it subside on its own.
We are constantly bargaining in our minds. “If we could just get one day of pain, we would never ever take that for granted again.” “If I could just work out like I used to, I would be so happy and be a better person.”
Bargaining is a natural stage of grief. But like I said, it’s a stage in a cycle of grief. I have thoughts like this every day. It’s those “if” thoughts that make us grieve the life we had before getting sick. The things we used to do without even thinking about them.
If we could just do them like we used to, we would never complain again. Sadly, that’s not how chronic illness works.
I became extremely depressed after my diagnosis. Depression is very real and very common with a chronic illness such as AS. After hearing that you’re going to be in pain for the rest of your life. It’s kind of a given, right?
It took months for me to finally be able to look at my illness as something other than absolutely evil and unfair. Trust me, some days that’s still how I view it.
Accepting a chronic illness diagnosis is incredibly difficult. For some, it may take years, or it may never happen. And that’s okay. It’s a cruel disease and you don’t have to be okay with it.
Acceptance for me was realizing that this is my new life, and what I do with it will make a huge difference in my mental health. I started believing that I will have better days, and moving forward I will be okay.
I use the mantra “everything is as it should be” to describe my life. It helps me find peace in my diagnosis of ankylosing spondylitis. It’s helped me find a purpose again after being diagnosed.
This does not mean that I am 100% at peace with my illness. Because I’m not. Some days are harder than others and it’s totally normal to restart this cycle. It’s going to happen, so just let it happen.
What I’ve learned from the grief
If I had never been diagnosed with AS, I wouldn’t have found my love for writing. My love for yoga. I wouldn’t have an amazing community behind me and people to go to when things get tough. I would have missed out on a lot of great friendships and connections with people around the world.
Sometimes things happen for a reason. It’s extremely hard to get to that place mentally when things are tough. I get it. Flares instantly put me down into a dark place. But just remember that flares won’t last forever, and there are brighter days ahead.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?