3 Truths to Remember When Defending Your Health

It’s been six months since my diagnosis, and now that I understand my body’s needs better, I find myself in a flurry of accommodation battles at home and work. I wrongly assumed a diagnosis and proper documentation would be all I’d need to garner support around me. Instead, I find my disabilities being scrutinized or even dismissed.

My first attempts at advocating for accommodations often ended with me feeling overwhelmed with anxiety and frustration. The ignorance and heartlessness was crushing. I wanted to give up, but I knew my health was at stake. As I ruminated on the hurtful conversations, I realized I was repetitively undermined by three specific insinuations. So I wrote down the truths and recited them as mantras, so I don’t forget when pressured by the naysayers:

1. I didn’t invent this disease.

The rules of the disease, as bizarre as they may be, are non-negotiable. Remember playing Simon Says? My disease is Simon and he’s ruthless. When I don’t listen to my body, it’s game over.

2. I didn’t choose this disease.

No one would. Furthermore, I don’t choose my limitations and I don’t enjoy them. Accommodations are not consolation prizes for disabilities. My greatest wish is for a cure.

3. I do my best despite this disease.

Every day. It is an hourly battle, but I have become incredibly resourceful and good at hiding my symptoms. I strive to live a normal life. However, I still need accommodations that support my health, just like I need medication.

Whether you’re a spoonie or know someone with a disability or chronic illness, I hope you too remember these truths when you’re frustrated. Let’s fight disease, not each other.

Follow this journey on Hell’s Bells and Mast Cells.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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