Living With An Invisible Illness.
Do you know what it is like to live with an invisible illness? Ashley does. Ashley was diagnosed 7 years ago with Crohn’s disease and Rheumatoid Arthritis. She was in remission for 3 years and came back out of remission in September 2019. First off, Ashley is my cousin, but she came to me while I was visiting my parents in Alabama. Her goal of this entire session is to hopefully give those who do not know or understand what it is like to live with an autoimmune disease and to give comfort to those that live this life.
It was a rainy day when Ashley and I met to talk about her life at her beautiful cozy home. When opening the door, she was on the phone, but you would have never thought she was sick and what she goes through daily. After she finished her phone conversation with her daughter we just began talking.
She told me that journaling and coloring gets her through her days. Especially coloring. We sat on the floor and Ashley showed me her bible that has coloring places inside. As we sat there, she began telling me more about her autoimmune disease..
Ashley opened up about the struggles of having Rheumatoid Arthritis. Where it is located on her spine causes paralysis on the right side of her body during a flare up. To her this is one of the most humiliating things. She goes on to say how she feels like such a burden to her husband family because when this happens, she can’t do anything really for herself. She is unable to get dress, go to the bathroom, get out of bed, and many other just simple life tasks that many of us take for granted. On a good day it can still take her 2-3 hours to get ready in the morning. She doesn’t really start to feel like herself until the afternoon and she may get about 3-4 hours of good time until it starts up again.
As we still sat on the floor, Ashley began to say that “it became so bad and so depressing after so many hospital stays and different meds that I know longer felt like I was needed but a burden and life didn’t seem so much worth living anymore, which were all lies but at the time I was so overwhelmed it didn’t seem so far from the truth” it was a very dark place for her at this period in her life.
From that point we began to chat a little more about her support system and how she now views being diagnosed with an invisible illness. I took some pictures of her daily life and what seemed like a million appointments she has each month.
She receives a Rhemicaide infusion every three weeks and will continue to do so indefinitely. If you are unaware of what this is, it is a type of chemo medication that you have through an IV that last about 2-4 hours that treats things such as rheumatoid arthritis and ulcerative colitis. She also takes steroids and is on a pain regime to keep her pain semi manageable. She has had two ports which one still has a scar that is left behind.
We also talked about her awesome key chain that one of her friends gave her, Wonder Woman. Which Ashley followed up with, “I feel far from Wonder Woman.” Believe me, she is.
We moved on to a new location in her living room to take more photos and she told me that heat is her best friend. She has her blankets and heaters nearby. Coffee and a good devotional also help ease her understanding on how to cope with what she never thought life would be at 38.
As we came to an end of our time together, we talked about her tattoo on her wrist. During this time, she felt as if this diagnosis was a punishment. So many people would tell her ooh how could this happen to you what did you do to deserve this. That is such a hard thing to hear when you are already questioning why me. She chose to have “forgiven” placed on her wrist to wear it faces towards her when she looks at it. This is because she knows she has been forgiven and that this lifelong disease is not a punishment. “I am forgiven.”
Having an invisible illness can feel so lonely, but there are over 28 million individuals within the United States that have been diagnosed with an Autoimmune Disease. There are so many people walking around battling things that no one can see. Just know you are not alone. There are many ways and things you can do in order to have support. There are many Facebook groups that you can join, along with websites to find support groups within your area.
Here are some websites about both autoimmune diseases along with the website for giving autoimmune diseases a voice:
Majority of the time we think we feel the loneliest is probably the time when someone needs us the most. So, no matter how difficult it may seem and how much of a burden you may feel there is someone out there that looks to you as their Wonder Woman. This life is not a punishment, you are forgiven, you are a testimony.