Invisible Disease

There are so many challenges with having an invisible disease, challenges that make it harder to even believe yourself. From the outside, you look strong and healthy, besides maybe a bloated belly at times (oh Endobloat!). People cannot connect the dots that you feel like knives are being dragged along your abdomen because it is all happening on the inside. And even for myself, I look at myself and think, I look fine, my wounds are healing, I should be able to do more. Why am I so tired still? Why can’t I lift more than 10 pounds? Why can’t I walk more than a few minutes in a grocery store without wanting to sit down? Even the day of my surgery, I had said to the pre-op nurse how quick my intake was and she said, “It’s easy when the patient is healthy.” If I am so healthy, why am I here?

It is a hard mind set to develop. Who wants to say they have an invisible, chronic illness? I have had a few people question how good I looked post surgery (like in week two, definitely not week 1), which in turn made me question why I wasn’t back at work yet, why I wasn’t doing more. But I know deep down, I am not ready, my body is not ready, my emotional and mental well being is not where it needs to be. I have prescribed restrictions from a doctor and I am still questioning it!

Women struggle with our periods every month as a burden we carry, a taboo subject we are not supposed to talk about because it makes people uncomfortable. Imagine on top of your period, excruciating pain that leaves you curled into a ball on your bathroom floor, unable to move. Imagine have to go to work, get through the day, keep smiling and working to the best of your ability, without sharing your struggles with anyone. This cycle, which goes on for years and years, creates shame surrounding our pain, our periods, and the invisible illness that plagues us.

Yesterday, my husband and I went down to Coronado Island, about a 20 minute drive, to get me out of the house an to do something together. The morning was beautiful, crystal clear skies, the waves calmly lapping the sand, the weather with a slight nip but comfortable in the sun. My husband was so gentle with me, so concerned about how far I was walking, and even looked at me at one point saying I was winded and it was time to turn around (we had maybe been slowly sauntering for 10 minutes). And he was right! I missed that cue that it was too much for my body because I am so used to powering through, ignoring any body signals because I have to for survival.

Again, this road to recovery is not just a road to my body healing, but changing the mindset of how I need to change my thought process about my body. Listening to cues, slowing down, giving my body what it needs whether rest or water or good food. It is slow, it is going to be a process, but a process I am so committed to.

Sending Endolove,

Molly