What I Know Now That I Wish I Knew Then: A Letter to Myself
As the one year anniversary of my AS diagnosis quickly approaches, I’ve been thinking a lot about how much my life has changed since this journey began. From treatments to new symptoms to COVID and the uncertainty that surrounded what was happening in our world, it has truly been a whirlwind year.
While reflecting back on the year’s events, I thought to myself, “If I could go back, what would I tell myself? Could I have changed anything or done anything differently that would have helped me physically or emotionally? Is there anything I know now that I wish I knew then?” So, I sat down and started writing what ended up being a letter to who I was a year ago, and this is what I came up with.
I know life is hard right now. The pain and suffering seem like they are never going to end. The days feel so long, and you feel more alone than you have ever felt before. Don't. So many good things are coming for you! This is just one small bump in the road, and believe it or not, you will find relief from this god awful pain and finally find the cause. And when you do, know that life is not over. This is just a new chapter, and it's not all bad. So many doors are going to open for you, while others are going to close. And that is totally okay; let them close and keep moving forward.
If you want to get through this without losing yourself, you NEED to open up to people. Let people in, don’t push them away. I know, I know, you can’t stand the thought of accepting help from others. Especially when it comes to parenting. But you need to for both you and the boys. You’re not supposed to be doing this thing alone, and you don’t have to. Believe it or not, people WANT to help you. You’re not a burden to anyone, even though most days it feels that way. And while we’re on the subject, STOP thinking your family is disappointed in you. Get out of your head and realize that no one is comparing you to anyone else. No one is wishing they had a different mom or wife. All they want for you is for the pain to go away and for life to be easier for you. You have an amazing support system that most people can only dream of, and you need to lean into them on those really tough days.
Remember how I said relief is coming? Well, it is. Humira is going to be quite possibly the best thing to happen to you in 2020. Unfortunately, this is not going to work out for you. When this happens, do not let the anxiety and depression take over your life. I know it’s going to feel like life is over yet again. But now you KNOW relief is possible, and you have an incredible team of doctors who are determined to make that happen for you.
And finally, be kind to yourself. When you need to take a break, take the break. Laugh when you want to, cry when you need to. Be present. Do not let this control your life. You got this.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?