Settling on Acceptance
Like anyone who has been diagnosed with a chronic condition, learning I had lupus was a pretty emotional time for me. I remember being bombarded with so many feelings at once and not knowing how to go about sorting through them. I’m sure many of you can relate. I think the first thing I remember feeling was relief; I finally had a diagnosis. I finally got the answer that solved the mystery of why I was feeling the way I was feeling, and now I had a direction in which to move – forward.
So many questions about my lupus diagnosis
As relieved as I felt, I couldn’t help but also feel a lump in my throat. I knew virtually nothing about this disease. I was a newly turned 30-year-old mom of 2 young kids and now what? Is this going to cut my life short? Are my kids going to get it, too? Will I ever feel “normal” again? I felt overwhelmed and intimidated, completely unprepared and pretty alone. If you have lupus, you know that trying to explain your symptoms to others who don’t live with an autoimmune disease can feel useless. It’s hard to really depict the gravity of what it’s like to have your body fighting against itself every day and what that can feel like.
I researched lupus symptoms and treatments
From the moment I arrived home after that first doctor’s appointment, I dove headfirst into equipping myself with all the information I could. I looked at what the common symptoms of lupus are, and I was astounded to see that so many matched the way I had been feeling for nearly 10 years. I learned about what can trigger lupus to develop in certain individuals and again was met with things that felt familiar. I was putting the pieces together and it felt good knowing that with a diagnosis comes treatment, and with treatment comes relief (at least to some extent). Around this time is when I finally started to see a little bit of hope peeking through. I told myself, “It could be worse”. I could still be waiting for my diagnosis. This realization made me feel lucky. There are so many people just like me, and with far worse symptoms, who haven’t been given a diagnosis yet. I was scared and overwhelmed, but now I was also hopeful and lucky.
Feeling hopeful about the future
It’s been a few months now and I am finally only 2 weeks away from my appointment with a well-respected and highly recommended rheumatologist. At this appointment, I anticipate we will be looking at my blood work from the past year and discussing treatment. My hope is that this treatment will give me some of my old self back. I crave the feeling of not wanting to return to bed as soon as I wake up in the morning. I miss when my brain didn’t feel so foggy and slow. I long to enjoy a day in the sunshine with my kids and not having to pay for it the next few days when I am in a flare. In these past few months my heart and mind have felt all sorts of things about my diagnosis; but from fear and overwhelm to relief and hope, and back again a million times, I have finally settled on this: acceptance. Everything is going to be OK.
Do you experience brain fog?