My hands have been resting on the keyboard for so many days with no words showing up on the screen. The thoughts were ready to be shared yet something was stopping me from writing them down. If I do it, if I go back to the day I was diagnosed with Graves and decide to share the journey, I will have to commit to it and give all I have. And quite frankly, I don’t know if I want to do it. I don’t know if I am stable and strong enough to go back and relive it, even if on the paper.
I keep asking myself why would I want to go there, why would I want to share the hell I went through and the answer is simple – to give hope to the ones that are in the middle of their personal autoimmune disease hell. And then more questions come up – Is my story even that relevant? Is anyone going to relate? I didn’t have it as bad as others, am I the right example? The doubt creeps in.
I really don’t know who would want to hear my story. I don’t know if it’s going to be helpful in any way. I don’t know anything at this point and my fingers are resisting typing down the thoughts I have.
The only thing that slightly pushes me to share my story is that burning feeling in my tummy that just won’t go away. That need to scream my story from the top of the mountain and share how God met me right in the middle of it. How, despite of my anger and resentment, He kept holding my hand.
While sick, I kept a very detailed daily journal. I blogged about it but I was very selective about what got shared with the world.Today I visited that old blog and downloaded the content before shutting it down. Thousands of pages. I read a random few and my heart broke for the girl that was surrounded by the darkness of the disease with no hope coming from the outside. Sure there were groups I joined designed to share the misery but they were always lacking the hope and uplifting components. So many people were just like me, angry, bitter, devastated, and lost.
It was about 9 months after my diagnosis when I turned the corner. I will have to share that very specific journal entry with you. My disease took a turn for the worse while my heart started seeing hope and light. Very weird combination. Shouldn’t it all go down to hell together? Somehow I found a peace in my disease and answer to ‘For What?’ question. That deep desire to bring light into the autoimmune community took over my heart and soul. That’s when I started sharing some of my journal entries on my blog. To my surprise, others started reading, sharing their stories with me, finding hope through my writing. It was an amazing feeling to be able to help someone who was struggling. At the same time, hearing about their desperation and brokenness scared me and ultimately drove me into a very sad and isolated lifestyle. I could not help them given that I was myself not right in my heart and mind. And I was terrified to harm them. I shut down.
Since then, I went into remission, I was re-diagnosed with Graves, went into remission once again. I had two babies. My life changed a million times.
Throughout that time one thing was constant – the people that somehow got connected with me seeking advice, hope, asking questions that I could answer if I dug deep and was willing to share the ugly and the sad and the happy outcome.
Eventually I took my blog down. I noticed that every post was visited thousands of times which I had a hard time understanding. Who in the world would want to read that stuff? Until one day, very recently I received an email from someone I’ve never met asking for my blog posts so she could share them with one of her patients. ‘You do that?’ I asked. Her answer was very simple ‘I do. I count on your posts to change my patients’ state of mind towards their diagnosis. I only wish you were willing to share it all.’ I sent her the posts she requested and turned into prayer.
‘God, if this is what you want from me, I will do it. But you need to give me strength and wisdom. I don’t know what to do, how to do it, and I am scared to fall into the deepest depression while trying to relieve those dark moments.’
That burning desire to share my story did not go away. In fact, it grew stronger and God sent multiple ‘burning bushes’ my way – that’s what I call the signs we receive. So here I am. For the first time in a very long time, my fingers are touching the keyboard on the subject of Graves.
I don’t question it any more. I don’t think about who would want or need to see it. I truly believe that my ‘For What’ is just this – I lived/live a Graves life so I can bring hope and light to other patients.
Why all of the sudden I think that I can do it now?
I grew in strength.
Pray for me, as I set out on this journey. Pray that God gives me wisdom and strength and that He helps me reach the right people that need to hear this message. Pray that I use Graves as a platform to reach others’ hearts and show them what His unconditional love for us does in our lives.
While I share my story with you all I will be doing it based on the journal I kept, the memories I have, and the feelings I had then and now. Sometimes I will share the rough entries from my journal and they won’t be pretty. But I will share them so you can see that this disease took me on a journey through hell and heaven at the same time.
Graves isn’t the only autoimmune disease I will cover in my blog. You will get a chance to hear from other women and men about their journeys. You will also hear from amazing doctors in the AID community.
I want to create a space that is full of useful information and a space where you feel comfortable to share your heart and struggles.