Do not fear, for I am with you,
do not be afraid, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my victorious right hand. (Isaiah 41:10)
After 4 years of seeing many doctors and having WAY too many medical tests to count, I was finally diagnosed this past week with Mast Cell Activation Syndrome, or MCAS. You can read a brief description of MCAS here. Honestly, my husband Will and I did research on our own and knew I had this disorder for about a year and a half, but because it is a barely understood disorder (most doctors don’t even know it exists) and the testing for it is less than ideal, we didn’t have laboratory evidence until this past week. Now, I can officially say that I have MCAS, since it has been confirmed and diagnosed by the leading expert in mast cell disease, Dr. Lawrence Afrin.
MCAS is a chronic illness, not a terminal one (although a very small percentage of folks die from MCAS due to anaphylaxis, since reactions to triggers can range from mild to severe), but it is still a life-changing diagnosis. It means that there are things in life that I have to stay away from, because those things or activities trigger my MCAS. My personal triggers include high-histamine foods/leftovers, extreme temperatures, exercise/exertion, and smoke/smells.
Living with chronic illness is not easy. It means that I am limited by my illness in ways that healthy people are not. It means that my energy is much more finite; the Spoon Theory explains what it is like to live with chronic illness really well. I’m lucky in that my MCAS is moderate, and I am not severely disabled. But it does mean that my life looks very different than most peoples’ lives.
Honestly, being chronically ill meant choosing to live as a Christian minimalist was a no-brainer. Having a chronic illness mean I have to be very intentional about what I spend my energy on anyway, so focusing on what truly matters (and getting rid of things that don’t) makes a ton of sense.
And as I figure out how to best spend my finite energy on what matters, I am very aware of God’s movement in my life. The fact that I even got a diagnosis is a miracle in itself. And as I continue to try different medicines to find the right combination for my body, I know that (as the prophet Isaiah reminds us all) God will strengthen me, help me, and uphold me.
I am realistic enough to know that God may not decide to completely heal me (although I am not ruling that out, it does happen!), but God will hopefully work through medications and lifestyle changes so that I can manage my chronic illness better. And– my hope is that God will continue to guide me in how I allocate my energy, so I can continue to live as a Christian minimalist and focus on what matters most.