faith, illness

Too Much Information: 10 Unexpected Symptoms of My Illness That It’s Taboo to Talk About {Part 1}

There are parts of my illness that no one talks about. There are parts that are taboo or considered oversharing, but not ever talking about it isolates us and makes us feel ashamed. 

So here are some symptoms of my illness that it’s not socially acceptable to discuss. 


1. Blood

I deal with it way more than I expected. I have bloodwork every 6-8 weeks, but that’s not really what I’m talking about. 

I’m talking about all the blood that ended up on me and the floor resulting from the eight tries it took to lace the IV into my collapsed veins before my surgery. There was enough blood that other people in the room had to sit down so that they didn’t pass out. No one wants to see puddles of their own blood on the floor.

I’m talking about blood in my urine, blood in my stool, bleeding internally, extremely heavy menstruation, and all around trying to not lose too much blood. 

I didn’t know trying not to bleed to death would be part of my life on a regular basis.

Trying to walk after episodes of blood loss. 

Trying to get my iron back up and the constant setback every time one of these issues arise. 

This is the icky part of autoimmune diseases that no one talks about. 

When I cancel a get together, I’m not really comfortable saying, “I can’t come because I can’t stop pooping blood” or “I can’t come because I’m changing tampons every 15 minutes right now” — even if it’s the truth. 

Most of these issues are under control right now, but they can and do rear their ugly heads sometimes. 

It’s just not considered polite conversation. 

If I do mention it, it’s in hushed tones or over a private message to a very good friend.


2. Makeup 


I miss makeup. 


I have never been a big makeup wearer. Even in high school, I rarely wore makeup even to church. 


But, now that I am an adult, it would be nice sometimes. Homeschool meetings, church, date night, doctor appointments, weddings. 


I have tried many different brands and finally decided my vanity wasn’t worth my health. 


Since I randomly react to products that I’ve been using successfully for years, being makeup-free means there’s just one less thing to react to. 


Even if I found a product I could wear, my skin is so sensitive I would likely eventually react to it. 


My reactions to my uber-healthy deodorant and shampoo just reinforced that fact.


3. Undergarments 


I never thought I would suffer the humility of being the person not wearing undergarments. The truth is, some days I can’t wear them. 


I have rashes all over my body from only-God-knows-what –probably a combination of immune sensitivity, yeast, and food sensitivities. 


My rashes have been so bad in the past that I’ve had moms usher their children away from me fearing I was contiguous. That was unpleasant. 


Some days, everything is too tight or too itchy. There are days I wish I could live in a nudist colony, because everything hurts and irritates my skin –not really, but you know what I mean.  


I haven’t worn jeans in most of a decade for this reason — it’s not because I’m opposed to pants. I’m not skirts-only. I just can’t handle wearing pants right now. 


The most accurate word I can conjure is claustrophobic. That’s just how they make me feel. 


So, if you see me in the grocery store, and it looks like I’m not wearing a bra, it just got brave and ventured out of the house on one of those days.


4. Food 


I love food as much as the next person. I’m not addicted to it like some people are. 


But, food doesn’t like me. 


I wish it were as simple as “Eat healthy, and you’ll lose weight.” 


It’s not. 


It’s so incredibly more complicated. 


I’m allergic to a huge amount of things normally considered healthy. 


I’ll just list a few examples:


Stevia? Makes me horribly sick and very moody. Stevia is in everything right now! 


Kombucha and fermented foods, which all my health-conscious friends like, makes my feel like I’m going to vomit and like I have burning all over my skin. 


A few years ago, I ate only salads and plain meat for 18 months –even for breakfast– and still gained weight. 


Did you know that if you’re anemic your body can’t lose weight, because there’s something in the iron that allows your body to expel excess fat? 


Did you know that not everyone absorbs the nutrients in their food? 


I’m currently eating a diet high in protein, but blood tests revealed that my protein level is actually very low, because I’m not absorbing what I eat. 


A long time ago, I stopped assuming that everyone who was overweight was eating poorly. 


Now, I understand that it’s more likely a health problem. 


Beyond not absorbing foods, for about a year anything I ate (except about 4 items which I combined into a casserole of sorts) made me sick to my stomach and caused bloody diarrhea. 


I’ve expanded that back to about 15 or 20 items I can eat, but, if I deviate, I get sick again. 


Salads are out: I can’t eat any veggies right now. 


I was ecstatic when I could finally eat pears and bananas again without getting sick. 


I miss salads and fruit, but I’m at least still alive. At least there are still some foods I can eat, and I seem to be increasing the number with time under the treatment and supervision of my doctor.  


Needless to say, I tend to lack compassion if someone complains to me that their doctor is removing a single item from their diet.


{Come back tomorrow for page 2!}


Blessings,

Sarah Forbes 

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8 thoughts on “Too Much Information: 10 Unexpected Symptoms of My Illness That It’s Taboo to Talk About {Part 1}”

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