Eight years ago, I found out I had a rare chronic disease. The largest artery in my body has difficulty carrying blood from my heart to the rest of my body.
I have Takayasu’s arteritis, a condition where the largest artery in my body (the aorta) is inflamed and has difficulty carrying blood from my heart to the rest of my body.
In the months leading up to a weeklong hospitalization, I experienced a sudden onslaught of debilitating symptoms. Just to name some: I felt heart palpitations, widespread nerve pain, nauseating migraines, temporary vision loss, a constant fever, rapid weight loss, muscle and joint pain, and more.
This eventually led to my diagnosis. I was fortunate enough to find an amazing team of doctors who came together in an effort to keep me alive, despite the grim outlook of my condition. They provided a treatment plan that could help me maintain as “normal” of a life as possible.
It isn’t always so easy to translate the signs of a chronic condition, especially when it’s not visible to the naked eye. For most people, seeing someone live a full life without obvious signs of pain or discomfort can be confusing. It may be hard to sympathize, and understandably so.
In my experience, communication is the key to breaking down the misconception that someone with an invisible illness can’t still live fully. Here are 10 things I wish you knew and could keep in mind.
1. I appreciate your sympathy
Yes, I know you don’t feel my pain, and you might’ve never gone through a traumatic near-death experience, so you simply feel like you can’t relate. However, knowing that you’re there for support when I’m feeling vulnerable or in need of assistance means much more than you’ll ever know.
2. I’m in a lot of pain today
As I mentioned previously, living with a chronic illness comes with a host of symptomatic episodes that can come at any given moment. Throughout the years, I’ve become pretty talented at masking it for the sake of the comfort of everyone around me. But that doesn’t mean I’m feeling great, either.
3. I just need you to listen
While I know that you want to help and your intentions are good, your unsolicited advice about how to “cure” me may scare me away from wanting to vent to you next time I’m in pain.
4. I require rest periods
Although there’s nothing more I’d love to do than hike that trail with you or pull an all-nighter for the sake of making 20-something memories, I just can’t. My body is delicate due to things you can’t see but that I can feel. I need to honor my body’s requests.
5. I need my alone time
Trust me, it’s nothing against you or our friendship. I just need my days of practicing self-care. It’s absolutely crucial for those moments of crippling pain and the roller coaster of emotions.
6. I can’t keep calm
Unfortunately, I have to worry whenever something feels horribly wrong in my body. My preexisting condition — which is known for being completely unpredictable — can sometimes also be life-threatening.
7. I’m more self-aware than ever before
I do the best I can with what I’ve got. But I also have to enforce boundaries on situations that may be too much for me to handle.
8. I need a shoulder to cry on
As my friend, the best thing you can do for me is to just be there. Like I mentioned before, I’m not seeking medical advice or condemnation. I just want you to hold space for me when I need it most.
9. I wish you could truly understand
Although I wouldn’t wish this invisible illness on my worst enemy, I do feel like it’d sometimes help if you felt my exact pain, even if for just a day. Experiencing my condition firsthand would certainly help in gaining understanding and empathy.
10. I’m optimistic
Despite what I say during those moments of fear and pain, I’ve been through quite a bit in this life journey. Medical science has made incredible advancements, even in the seven years of living with this rare chronic disease. I know my future is bright.