It is said that people come into your life for a reason, and for me, that is so true. I have realized that having Ankylosing Spondylitis has brought me across some of the most amazing people. The many AS patients I have met in the infusion room and online are a huge comfort. They help me to know I am never alone in my fight. Although with the multiple frustrations and lonely days feeling I have to constantly battle this disease I am still comforted with each new person I meet that can and/or will attempt to understand my pain. Since my original diagnosis with AS, I have been sent to several other types of doctors to rule out different illnesses that have sprung up throughout the process of my treatments of AS. One that sticks out to me is my visits to the Oncology/Hematology office.
My New Friends
I think the first visit was the hardest. I felt almost ashamed of my pain and exhaustion or even being at a point of hopelessness. Vividly remembering my days before my first visit being so silently scared and angry that I may have to fight for something else and wondering why me? Then I walked in, with a full head of hair and not fully dependent on another. I didn’t need someone to sit next to me in a chair holding my hand to convince me I could be strong enough. I already knew this, I knew I could fight without wondering if tomorrow would come for me. As I looked at these worried faces, bruised and weak I wished I could make it better for them, I wished I could give them some of my strength that I thought I didn’t have before I opened that door. I wanted to shed tears for them but knew this was a place of hope for them. Maybe today they would be in remission or find a cure. I hoped for them too.
As I sat filling out paperwork I met a man who openly began to share his story with me. He was in his 70’s, fragile, sitting in a wheelchair but with the spunk of someone younger than myself. He told me of his diagnosis and his experiences. Instead of talking about the negative he only spoke positive. He talked of his family and his hobbies. How he found more time to appreciate his surroundings. As he talked of his life, a young mother, with thinning hair chimed in as she attempted to chase her toddler through the waiting area. She shared how she she was diagnosed when her child was a few months old and how she just prays daily for a few more minutes with her child. Not a few days, but minutes. Not once did either of them look for some sort of pity. As I listened to their stories I was left speechless. Those who know me, know I am hardly ever without a word to say. I could not say I understood because I didn’t know what it was like to wonder if today was my last.
I walked back to the area where patients were getting chemo. I watched as they were getting frustrated from the nausea or just plain old exhausted from the energy it had stolen. As I got my blood drawn and the nurse cheerfully asked how I was feeling I gave my answer with guilt. I was feeling well. I met the doctor and immediately he told me I was in the clear for right now. It was a huge weight lifted off my shoulders. Round one went to me. I again was feeling ashamed of my self-pity that I had earlier in the day. As I walked out I passed both the older man and the young mother. We said our goodbyes and wished each other well. Little did they realize the impact that they had on me that day.
I Can Do Something
I realized that there are definitely people out there with worse health problems but that also it was okay to feel a little shafted with the AS diagnosis. My AS was blessed upon me to help me appreciate what I do have in life, to hold it, and to cherish every “good” moment. I need to remember when I want to give up why I am holding on so hard in the first place. I look in my kid’s and husband’s eyes and know there is a reason to keep on staying strong. I’m allowed to feel upset but have to also know that there is hope. I may not have a cure for my disease but that if I could not win this one battle I could still do something to help. If my words could help just one person, like the words of my 2 new friends I met that day, and show that having courage and hope can mean so much, I will have succeeded. People with AS do not “complain”, we struggle with the question “why” this disease is so uncontrollable. We want others to not “pity” us but to “understand” us. It is frustrating when we cannot explain our pain because it is not a visual illness. Because of this, we can hurt as much emotionally as we do physically. I will hold tight to my stubborn ways and never allow myself to give up this fight.
Share With Me
AS’ers: Has AS “helped” you in any way? Has meeting other AS’ers helped you to find comfort in knowing you are not alone in this disease? How do you help spread awareness?
Support System: How have you tried to help comfort your AS loved one? What works? What doesn’t? How have you helped spread awareness?