I usually apologize or make excuses for when I go months without writing. But, I’m a full-time working mom with a lot of shit on my plate. So there’s my excuse.
For the past 23 years, I have lived with a somewhat invisible illness. PCOS (Polycystic Ovarian Syndrome) is not invisible to the millions of women who fight it everyday, but to those who do not carry the diagnosis, we “cysters” are seen as fat, lazy, balding, bearded, and depressed. I have told my story on this blog before, however, I have recently been diagnosed with an autoimmune disease that is causing pain and swelling in my joints, as well as sucking the little energy I had left after the PCOS was done with me. I thought it was time to add my two cents into the Invisible Illness discussion.
Since I was 16, I have known what it is like to hate the very essence of yourself. I look at myself everyday and check to see if another pound has joined my once “healthy” frame. I study my scalp to see if any hair has fallen out or if any new ones are finally growing. I inspect my face for hair that needs to be constantly plucked. I walk around with my abdomen so bloated and swollen that strangers ask when I’m due. (This especially sucked when my husband and I suffered a miscarriage, had to endure copious tests and invasive procedures, and were considered infertile for years at a time- thinking maybe my 50-70 day cycles meant I was pregnant, and then being heartbroken with every negative pregnancy test.) On any given day, I’m smiling through stabbing pain in my ovaries as the cysts/follicles that canvas them grow and shrink due to unstable hormone levels. I have dropped to my knees as cysts burst. There are days when the slightest movement can bring tears to my eyes. I know the embarrassment of “menstrual malfunctions,” because your period is insane. I know what it’s like to have my body produce too much insulin, not break down glucose, and yet irrationally crave carbohydrates. I take two different medications daily in hopes of managing my hormones, insulin, and excess testosterone. I have lived with PCOS for 23 years, and I know how it feels to be shamed for having the above mentioned symptoms.
Last October, what seemed like a pretty low-key injury triggered my immune system to go into overdrive, which lead to my recent diagnosis with Rheumatoid Arthritis. So, I also now know what it is like to have such intense joint pain that you simply cannot get out of bed. I know the desperation felt when your immune system attacks itself. I know what it feels like to have your body so confused by its own failings. I am experiencing first hand, the ups and downs of prednisone and the never-ending trial and error of finding the right medication. I know the sadness in your children’s eyes when they ask if you can play outside with them, and you have to tell them “not right now.” I know the disappointment in your husband’s face when you walk through the door and he’s hoping to see you not limp.
I am writing this not for pity or sympathy. I’m writing because we judge each other entirely too much. All of the cliches about not knowing other people’s struggles are so true. There are an infinite number of other pertinent issues to concern yourself with. Let people be. Stop judging. Support.
FYI- I happen to have some pretty amazing people in my life. Some have been there forever and have been supportive for a long, long time. Some are relatively new, and are teaching me and helping me to adjust to my new diagnosis. I have a plan. I have a strong support team. I am lucky. I know how it feels to have your husband hold you as finally break and cry out all of your frustrations. I know how it feels to have your mom rush to your side when you’re doubled over in pain, and call you daily to check in. I experience such compassion from my young children when they hug me, kiss the tear that escaped and made it’s way down my cheek, and allow me to rest. I know my family and friends understand when I cancel or decline plans because I’m just too exhausted to do anything. And even though I do hate my body most days, I am proud of its resilience and strength, and I am thankful that it created and gave life to two amazing babies.
Step 1. Learn to love yourself……………………………………….
Fudge 
Spike
Overhauling Mama 