When I was diagnosed with psoriatic arthritis I didn’t cry. I was devastated, but the tears didn’t come until days later.
Hearing the words. “You have an autoimmune disease,” is life changing. No, it’s not a death sentence. It felt like one though. I immediately knew life was never going to be the same. Since autoimmune diseases are incurable, life as I had known it was indeed over. I didn’t quite know what that meant though.
As I walked out of my rheumatologist’s office, armed with pamphlets on the disease modifying drugs she wanted me to look over so I could decide which medication I was going to start on my next visit, I was numb. My mind raced to answer the questions my brain set on rapid fire spat at me.
The truth is, before getting diagnosed with psoriatic arthritis, I had not faced a lot of tragedy in my life. I was one of those lucky people who seems to escape bad things happening to them. Things usually seemed to work out. Now don’t get me wrong, I definitely experienced my share of pains and hurts throughout life, but true tragedies? I had been fortunate.
Some of you may be thinking it’s awful for me to assigned being diagnosed with autoimmune disease as a tragedy. But for me… in the beginning… it absolutely was. As I am sure it was for many of you too. It is tragic to hear you have this disease. A disease that is going to affect your life for the rest of your life. A disease you have no hope to cure.
There is no cure for autoimmune disease. It kept replaying in my head on a never ending loop. I wanted someone to scratch the record. Make the continuous statement stop. How did I have something incurable? I had always been so healthy.
As bad as it was knowing this was going to be with me forever, what made it even harder was that I felt ashamed. Why shame? I hadn’t the slightest idea how I had brought this upon myself, it was something out of my control. Even though I hadn’t done anything to cause this illness, I blamed myself for getting this disease. I was embarrassed and ashamed, and I didn’t want to tell anyone I had it. My family knew, and a few very close friends, but other than that no one. I kept my diagnosis quiet to any and everyone else. I was still trying to wrap my head around what it meant to have an autoimmune disease. It was hard to even speak the words. I was still dealing with the shame of being sick. The branding of being different.
I didn’t know anyone else with an autoimmune disease. I didn’t have anyone I could talk to about what I was going through. No one understood. I would share with my husband how I was feeling. He could see the physical pain. My parents would ask how I was doing. How many times can you explain something to someone with no comprehension before you tire of your own voice? Everyone was loving and supportive, but I felt like a burden and got use to saying I was “fine” when I was anything but.
In the days, weeks and months after receiving my diagnosis I got to work. I started researching what psoriatic arthritis was, what my specific types of symptoms meant. Uveitis, dactylitis, joint pain, inflammation. I began to learn about what lifestyle changes I could make. Nutritional choices I could make to heal my body rather than hurt it further. I got informed and started implementing what I was learning.
About nine months after getting diagnosed, I started my blog Thriving on Ashes. It was a way for me to anonymously share my journey, document the different things I had experienced and faced living with this autoimmune disease and the things I was learning along the way. I started a companion Instagram account too. I hid in the shadows, terrified someone might somehow discover that it was me putting these musings and pictures out into the world. I wanted to share, but I couldn’t dare have it associated to me. I was very careful with what I said. I didn’t show my face. I made little mention of my family, other than the fact that I was married and had two little boys.
As I began taking steps towards becoming a health coach things began shifting for me. I started becoming more myself. I realized if I was really going to help people, I needed to put myself out there. I had to show up authentically. I had to step out of the shadows and claim my life for what it was. It wasn’t the life I had planned. In fact it looked a lot different, but it was still my life.
Showing up as me was one of the scariest, and most liberating things I have ever done.
Once I began putting myself out there a funny thing happened. I started interacting with women in my community. Friendships blossomed from strangers. Women across the country, and some across the world, understood my plight, as I understood theirs. We had shared stories. Similarities that no one can understand unless you are living with autoimmune disease and chronic illness. I have confided more personal details about the experiences I have had with these fellow warriors, than I have shared with some of my closet friends in real life. They got it. And I got them. I finally felt connected. I was heard. I was accepted. Women who I didn’t know were helping me. Women who I didn’t know… I was helping them.
Last November I stumbled onto the Autoimmune Sister Instagram page. I fell in love with the messaging. I went to the Autoimmune Sister’s blog and immediately recognized what a special place it was. I was amazed by the community. I needed to be a part of this, even if just on the outskirts. I found a link to apply to become a contributing blog author, but I pushed the idea aside just as quickly as it had entered my head. Maybe one day. But I kept thinking about it. The idea would not leave me be. So a couple of weeks later I pulled the information back up and submitted my application. When Aimee contacted me we had an amazing, and very long, conversation. I connected with her instantly and was again astounded by how similar our stories were. We came from such different places and yet…. This has been a common thread with many of the women in our community who I have had the privilege to meet and come to know.
In stepping out of the shadows to share my experience I have found this tight knit community of beautiful, strong, badass women. We are similar and oh so different. Autoimmune disease effects everyone in so many varied ways, but our commonalities, our shared experiences unite us. We are bonded in a sisterhood none of us wanted to be in, but one we are choosing to embrace. Because when we embrace the fact that we are different, but that is ok… it is not a tragedy after all… we embrace our fellow sisters on this journey with us.
Finding and accepting our communities is so important. We need communities like this. Sisters that hold us up. Friends who understand. Others who have been there or will be. The ones who know just because you can’t see the illness doesn’t mean it doesn’t exist. That we aren’t faking being sick, we are feigning being well.
The calling isn’t placed on everyone’s heart to share their story. I’m glad it was placed in mine. If sharing my story at any point in time helps one woman realize she is less alone then it is worth it. If the hard things I have experienced will help another woman to avoid pain, end it sooner or lessen it in any way then it is worth it. Standing in the light of my reality has brought me closer to who I am. It allowed me to be part of a community I have fallen in love with.
Having an autoimmune disease does not have to be tragic. It is life changing for sure, but the healing you can have because of it may be one of the greatest gifts God can give you. That is what it has done for me.
I would love to hear where embracing your diagnosis led you. Leave a comment below if you would like to share.
*DISCLAIMER: I am not a doctor or health care professional. I am not licensed, nor qualified, to give medical or nutritional advice. My posts are not meant to diagnose or treat. They are meant to be informative. I am sharing my experience as someone who has suffered with and continues to live with autoimmune disease. Please consult with a doctor, nutritionist or medical professional for any medical needs and/or questions.*