Where My Story Starts
When I was first dealing with my autoimmune symptoms, the swelling and severe pain in my foot, the pain, pressure and sensitivity to light in my eyes, the anxiety, the thyroid issues, the foggy brain and fatigue, I had no idea what was happening. That’s how autoimmune goes though, doesn’t it?
For a year I dealt with unexplained issues. Problem after problem cropping up with no real answers from specialist after specialist. The only thing I knew for sure was whatever was going on was turning me into a kind of mama that I did not want to be. I was tired. All the time. I could barely put pressure on my foot. I could not walk without limping so running after my toddler was out of the question. “Mommy doesn’t feel good,” became a mantra I repeated all too often. It’s heartbreaking when your two year old kisses your foot so, “Mommy better?”
When I was diagnosed with psoriatic arthritis, an autoimmune disease which attacks your joints and soft tissue, the sadness really set in. This was going to be with me forever. At the time of my diagnosis my boys had just turned three years old and nine months old. They would never know me, never remember me, without this disease. Talk about a gut punch.
Motherhood is full of guilt. Autoimmune disease is full of shame. Put them together and it’s a heck of a destructive recipe.
How was I going to be the mom I always wanted to be? My dreams of being the fun mom, chasing after my boys until they were old enough to catch me, dimmed. My dreams of being the sporty mom, playing backyard soccer and baseball, dashed. My dreams of teaching them… well anything, disappeared as I had trouble remembering the simplest things. How was I going to be a good mom to these kids when my body was failing me?
Once I started healing, other incidentals popped up. As part of my healing journey, I went gluten and dairy free. I found myself preparing and cooking different foods than what the rest of my family ate. I felt guilty about forcing my dietary changes onto the boys, so I didn’t. I felt bad for turning down their offer of a shared cookie because I knew the gluten would throw my body off. I felt guilty for being “different.” Would I get to be the fun mom? Would I ever be the cool mom? I was spending money on doctors, supplements and non-toxic household and personal care products to support me in getting well. I felt guilty about spending the family money on myself. That Mommy Guilt… she’s a beast.
I felt guilty for what I believed I could not give my children. I grieved the life I thought I was supposed to have. I mourned the mother I thought I was going to be. The mother I thought I was supposed to be.
Part of the work I did in healing myself relied heavily on making changes to my mindset. One day the thought came to me. What if, instead of looking at what I wasn’t giving my kids, I looked at what I was now able to give them because of my autoimmune disease?
What if my autoimmune disease was giving me the opportunity to be an even better mom?
I started looking for the good in my disease. What was it teaching me? What was it allowing me to teach my children? Slowly, I realized there was good in what I previously thought was the devastation of disease.
Autoimmune disease taught me patience with myself and my entire family. I had to be patient in my healing process. My boys had to learn to be patient with me. I’ve been able to teach them empathy and compassion for others through my own pain. They understand to take other people’s feelings into consideration instead of focusing solely on themselves. They have learned to be more helpful. They both love to pitch in and, at times, I had to rely on their assistance while in a flare. Any little bit helps, and I still lean on them when I am too tired to do my normal activities. It’s also taught them to be more independent at an earlier age than I probably would have pushed for had I not gotten sick. I have been able to show them that being “different” is okay. Different can be a great thing.
Mommy is different from other mommies. But then again, wouldn’t that have been true regardless of my illness?
And remember those dietary changes I made? That ended up being a blessing I am beyond grateful for. Recently, I noticed my youngest (now three years old) was experiencing digestive issues. After a little experimenting with his diet, we completely removed dairy and viola! His tummy troubles disappeared. Had I not gone through my own issues and done the research, I never would have known dairy was a likely culprit. I was able to help him without a long and strenuous journey of his own.
It sounds strange to be grateful for a life-long, life-altering disease for which there is no cure. It probably even sounds crazy, but it is true. I am deeply grateful for the lessons life has shown me since my diagnosis. I am grateful I get the opportunity to be a better mom. I know I am better than what I would have been. This disease has changed me for the better.
Perhaps the biggest lesson of gratitude I have learned from my disease is that my kids didn’t really care what kind of mommy I was. I cared because I thought I needed to be perfect for them. But really? They just wanted me. Hugs and kisses, an ear open to hear them, and “I love you’s” were, and are, the biggest things that matter to them.
Mama, all your kids need you to be is their mom. Not perfect. Not cool. Just Mama.
Ashley, you could have written my story. What a beautiful narrative for all mother’s out there regardless of having an autoimmune disease. I think “mom guilt” is the most cruel and destructive ways our mind can play tricks on us. Changing your mindset was the key that took you out of that prison. Sending you good vibrations of love and healing. XOXO
Thank you for the good and healing vibes. I hope you are well and in a non-guilty mommy space <3
God Bless You, praying your experience and research will help others live the life they so long for. You are an amazing, caring person.
Good health wished for you always.
Thank you so much Sharon.