A Letter to Myself on the Day I Was Diagnosed With Ankylosing Spondylitis


Dear Maggie,

I know how scared you are. I know you have waited for answers for a long time. You feel confused and trapped in your body and the physical pain is debilitating at times. You have seen many doctors and specialists. Every test coming out negative and every procedure not showing any answers. The doctors are starting to believe it’s in your own head, that the pain is a manifestation of past trauma in your body. You know that’s not true.

You have fought hard for so long. You have become an advocate for yourself, pushing for solutions and not taking no for an answer, something you have never had to be before. You are almost there. Today you will get answers. Today you will finally know what is going on. You have known that something was seriously wrong for a long time.

A kind doctor will take your concerns seriously, run tests and find a positive on a gene on your chromosome. When you get the results you will feel hopeless, trying not to fall apart. “This isn’t the diagnosis I wanted!” you will scream in your head. There is no cure. It’s progressive. “We just want you to be comfortable,” this doctor will tell you. You will feel defeated trying not to break down in the doctor’s office.

I want to tell you that it’s not over. This isn’t where your story ends. I know it feels like everything is falling apart. I know how hard and long you have fought for your life, for your happiness and for your freedom. I am going to tell you yes,  it will be hard. This road of chronic illness isn’t an easy one. I won’t tell you it’s worth it, because you didn’t choose for this to happen. But I will tell you it will be OK. You are OK. You are not broken beyond repair. You are not powerless. I know it feels like it. But I will tell you there’s light.

I have come to believe that through the darkness there is always light, even the smallest sliver. There are moments to be shared with loved ones, joy to be experienced, peace to be had. You will even go back to school full-time and make a 4.0. You will learn how to live with this illness and how to best manage it. So please don’t give up. There’s purpose for you here. You will be able to share your story with others and help them. You will be able to share the darkest parts. They will see freedom in your eyes. You will someday see that there was some good in this, some purpose. It won’t make sense for a while, but it will someday. I am not saying it will be perfect. It won’t ever be, but you will find a freedom and acceptance you never had.

Trust me and hold on,

Maggie

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