How autoimmune disease changed my life

Today, social media brought back this photo from exactly ten years ago. I was on vacation in Capo Verde with a friend, had just met the man who would later become my husband a few weeks prior, I was carefree, on vacation, and most importantly, not ill and still hearing.

Now, for the last two things, there’s no need to go back in time, as I’ve been sick since 2019 and deaf since 2020.

How has the autoimmune disease changed my life? Well, it’s easy… first and foremost, it made me deaf (profound bilateral hearing loss). I was only able to receive a cochlear implant on one side (the right, because the left had completely deteriorated).

My rare autoimmune disease is now under control (knocking on wood and crossing fingers as I write this). However, in my daily life, I take a mild chemotherapy medication (azathioprine) in the morning (which my doctor and I are trying to reduce to see how my white blood cells react). In the evening, I take a dose of warfarin to manage blood clotting (my blood needs to be fluid enough to prevent clot formation, as my autoimmune disease affected the pachymeninges and I was at risk of a cerebellar hernia). Additionally, twice a year, I receive intravenous rituximab therapy, and it’s uncertain when I’ll finish this… definitely another 5 years. Of course, then there’s the issue of my ear, with rehabilitation, mappings, and maintaining the implant, along with all that entails.

Now, setting aside the aforementioned things, how has the autoimmune disease changed my life? In reality, it’s more about how the autoimmune disease has impacted my life. First and foremost, the deafness, but it hit me deeply. When you’re sick and no one believes you, thinking you’re making up the pain, it’s not pleasant. You start doubting yourself. When they conduct any kind of test and your veins are so exhausted that even the anesthesia-inserted access only lasts a week (while it lasts months for normal people), you start to think that maybe your body is giving up on you.

I’ve suffered so much… my headaches (since I had meningitis) were horrifying, every slight movement felt like being pricked with needles everywhere.

I’ve learned to endure the pain. I’ve learned to make my voice heard, much more than before. I’ve learned to recognize whether a person is kind or unsympathetic without even speaking to them.

I’ve become more instinctive and attentive to what my body is “telling” me. But make no mistake, I’m still the same fool for collagen, tattoos, luxury shopping, wine, aperitifs, and dinners.

I’m a sick person, unfortunately, and I’m a deaf person (still???). At the moment, I’m trying to rebuild my life, from growing back my hair to work. I still get annoyed by things that bother me, like people cutting in line, or those who don’t stop at crosswalks, or those who tailgate on the highway and start honking. But these things used to bother me before as well, except maybe I stayed silent then, whereas now I respond and ask. When I can’t, I simply tell them off. Quite stylish, I’d say.

As my dad says, you’re a firecracker.