Life is wonderfully challenging.
I must do the dishes today….
We all know that hypochondriac. That is not who this letter is about. It is not easy to watch a loved one suffer, even more difficult when you just don’t understand. To often our fear and lack of understanding can build. As a woman, fortunate enough to have lived on both of sides of this, I feel I have unique perspective and advice to offer.
1. Only ask how a person is, when you truly feel like hearing how they are doing. It is exhausting to truly listen and understand about someone’s life with chronic illness. We can only begin to imagine how exhausting it is to actually live it. When you are not up to it, It is ok NOT to ask how someone is doing! Truly understanding what a life, prognosis, treatment, etc is like will often leave the listener feeling sad, confused, and wholly having no clue what to say. It is ok if you aren’t emotionally up to talking about it. Quite often the person living it is not up to talking about it either. But when you can, when you have the heart, time, and stomach to ask and listen, that asking and true listening will mean more than words can express.
2. Instead of telling them how good they look, tell them how glad you are to see them. Invisible illness is just that. Invisible. You rarely see the scars physical, mental, or emotional. This makes it difficult for people living with these diseases. They are daily fighting for their futures, their lives and some manner of normalcy. If a person with an invisible illness is out and with you, then something else in their life has been placed in the back burner. You are a priority to them. The fact that they are with you in that moment is huge. Dinner wasn’t cooked, laundry wasn’t done, and they may pay for it for days. A simple “thank you for being here” means that you appreciate how much their effort took and what it says about their love for you!
3. These are proud people. They don’t want you to see their scars. The saddest part of invisible illness is it seems to strike those who are passionate in their lives and careers. They are marathon runners, doctors, nurses, therapists, business developers, mountain climbers, and more. If you are seeing them, it is because they really want you to. It is a GOOD day. Which is horrifyingly strange phenomenon when a good day used to constitute kicking butt and taking names like no ones business. Everyday is like learning to live again, as the rectify the life they now have to the dreams for the one they used to live.
4. Answers aren’t easy and cures rarely exist. Like many diseases, invisible illness ones can be convoluted, political, and are ALWAYS desperately under-researched. Without proper understanding, funding, research, and medical information a cure will never be possible. Instead of suggesting treatments, telling anecdotal stories, etc, read the research available about the illness your loved one is facing.
5. These illnesses can be fatal. While not everyone who experiences invisible illness will die, some do. We have all know that one person who dropped dead one day looking so healthy and vibrant the day before. Silent, invisible killers like Heart, Chrone’s or Lyme disease, endometriosis, depression, PTSD and others are real and demand our attention before they take more loved ones.
Living with invisible illness leaves the sufferer as well as their support system depleted, confused, scared, and on edge. We are often left wondering what can we do?
- Ask how someone is, but only when you can listen.
- Offering someone with invisible illness a meal is like the biggest hug in the world and winning the lottery. It gives you time, energy, healing nutrients, and the feeling that someone gets it! Healthy food makes all the difference. Not only is this a great way to support them but also their caregivers.
- Understand when they can’t follow through on plans. Invisible illness may follow a pattern but is rarely predictable.
- Check on their care givers! Remind them they are human to. They spend their lives steeped in medical terminology, crushing diagnosis’s, and emotional upheaval. They need a break! They need to know someone is caring for their loved one so that they CAN take a break.
- Be private with the information they share with you. Do NOT share their medical issues. They are not yours to share. Most of those who suffer from this disease are proud, and while they are desperate for someone to understand what they are facing, they do not need the world to know their embarrassing, exhausting medical issues. Show your support through sending positivity and prayers, listening, providing a meal, or a laugh.
- If you work in a place that allows sick leave donation, and you are able to do this, this not only provides a paycheck, access to insurance, and peace of mind. I was so blessed to have weeks!!! WEEKS 😍donated to me by my fellow teachers. This was the difference between paying bills and not paying bills. Treatments for these illnesses are very expensive and rarely are covered appropriately by insurance.
- Take an activity to them, if they are up to it! Tea time conversations or a movie can be great ways to provide distraction. Just remember not to overstay your welcome. Visiting takes healing energy as well as giving it.
My hat is off to you my friends, my comrades, my partners in crime, those of us who will be perpetually tired and never reach the end of our list.
We make it look easy, even when every muscle is crying for sleep, engagement, relief.
We work. At home, in jobs, both, neither, it doesn’t matter.
We work. We, women, win.
Tomorrow is Wednesday.
Thank the universe.
My hat is off to each of you…Making it work, as only you can.
Maybe if balance were viewed as the quintessential bad boy, sexy and smoldering, it would be easier to achieve. I doubt it. Balance, like that bad boy, is never as easy as it seems; though it’s just as fulfilling as you imagine it to be.
- There is never a comfortable way to answer your mom’s questions about stds.
- Nothing says “trashy” like camel toe.
- True love and true friendship are equally hard to find.
- Someone will always be better, smarter, prettier, stronger, ballsier, (fill in the blank_______) than you.
- Too much of a good thing will always be bad, (i.e. too much vit C = UTI.)
- Never wear white to a wedding, ever.
- Never judge a book by its cover. (or Sarah Jessica Parker is gracious enough to look the other way when you poop pants.)
- Never let your partner deliver your baby….the things they see….you will not live this down.
- Never give yourself a bikini wax … And if you must ….
- ALWAYS Make sure your partner turns off their Xbox live mic before helping you with the hot wax accident.
Yesterday was my first day back to work. After having a baby 16 weeks ago today,I am one of the fortunate ones to just be going back now.
While working, I ran into a young teacher and mother who had recently substituted in my old position for an extended period. In a quick conversation I made the comment,“I don’t know how you did it!”
“I didn’t have a choice.” She replied.
This statement stayed with me all day.
I had originally planned to be home for this 16 week period of time; with saved and generously donated paid time off, I would return to work in February, finish out the school year, and decide from there how to manage career, family, and bills.
As life, Lyme, hyper gravidarum would have it, I couldn’t do that and blew through my sick leave within 5 months of a debilitating pregnancy. I spent months building up strength and finally decided to make a push and try to go back to my classroom that fall. I made it 5 days (2 with 163 students) before collapsing physically and mentally under the load.
I didn’t chose to be sick, get bit by a tick or be unable to get out of bed. I did choose to become pregnant and often times I confused that choice with a misguided responsibility to “fulfill my duties” to my work and students. I continued teaching a course online for 9 weeks after going on full FMLA, even though I could barely function, had to have my husband read me the emails half the time, and was typically vomiting at the time I was supposed to be “with” the class and lecturing.
But I made a choice.
I felt like a failure. After months with out a pay check, we had learned to live on less. Like ALOT less. It felt really good. We had done this before, living in a cabin in the woods on a 1/2 time teachers salary.
After my daughter was born, I realized that I could live with being the most beat up house on our very nice street, for a few more years. I am cool with the rust on my car, as long as it will pass inspection and keep on driving. I am ok with juggling bills, hurting my credit, and relying on the goodness of family occasionally.
We can’t be too prideful. We can’t have the perfect car or image. I have done some major damage to our credit in juggling bills in the last 4 months…
…but that was a choice I made.
I make a choice to swollow my pride. I quit my full time teaching job to work as a substitute.
I choose to be the shittiest house on the street.
I choose as many mornings as I can swing with my little one. Does that mean that the phone rings and people sometimes want money? It does. As it turns out, that job I could have gone back to was cut this week. It is affirming to see that had I chosen to go back, the universe would have simply reversed my course a little less gently.
This is not to dog working mothers.
We are all working mothers.
What I am asking each us to do is to stop belittling each other by making statements like “I wish I could do that.” Or “I just don’t have a choice.”
The only result produced by these types of statements is to further divide us as a group of women who are each fighting the same battle, juggling what we can and cannot live without, and wishing desperately for a maid, nanny and/or fairy god mother.
We each have a choice and those choices will define who we are as women, no doubt. However, Let’s choose to cheer each other on. If you are gonna go be that BAMF exec and show your little girl she can do anything! Do it! Own it! Rock it! I am taking a slightly different path. But I own it. This path is mine. I have been led here by my choices.
There are many things we each wish we could do, but we all have a choice.
Today I applaud your choice!
Warm pearls slide down my breast
my needing, kneading, needy little one.
Last Friday night I got drunk. I didn’t mean to.
I meant to have 2 glasses of wine.
I forgot Zoloft interacted with alcohol.
More than 6 weeks after being prescribed a very low dose, I had finally started it, much to my husband’s relief.
Saturday morning as he recounted the night before (and a pump and dump incident 😂), I am not sure he would say the same thing.
Almost three weeks in, I have no blow ups. I am struggling at times still but I have been able to acknowledge my weakness and even live in the moment some. It has been a groundbreaking three weeks.
Here is to 2016.