The Village It Takes to Keep a Chronically Ill Woman Going

It takes a village (or at least a small team of dedicated family, friends and even online friends) to keep this chronically ill woman going. Why does it take a village to keep someone with a chronic illness going? Well, there’s so much to my life even though on most days I would think that my life as a disabled woman is “boring.” I need help getting to doctor appointments, emotional support (this is huge), help with little things like picking up things and opening bottles and so much more! While I don’t like to always admit it, I do rely a lot on my village and they mean so much to me. I know I wouldn’t have made it this far in this bendy, breaking body without their help. Having multiple chronic illnesses has definitely given me an appreciation for the villagers in my life that dedicate their time to help me.

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I’d like to give a shout-out to the team of people (and canines) who have kept me going and kept me alive as of this point.

1. My parents. My parents have been there for me through every step of my journey with my chronic illnesses. My sweet mother spent one Mother’s Day and one of her birthdays in Atlanta with me while I was recovering from surgery. She was there for all of my seven surgeries for my endometriosis, never hesitating to drop her busy work schedule and people that depended on her at her work to be by my side. It brings tears to my eyes to think of how selfless she is.

On a recent trip back home to Maryland to see the EDS specialist, we were there a long time. Mom knew when we left that my postural orthostatic tachycardia syndrome (POTS) was flaring up and I needed some salt and fluids even though I insisted I was fine and wanted to go to the car. Mom made sure to make my shaky self sit down and drink a Gatorade and eat some chips. My parents have also been there to keep a roof over my head throughout the bad days. No one likes to talk about it, but being sick is expensive! When I had to stop working, I filed for disability. But it’s not an instant thing. I needed a surgery within a few months of stopping work and I had no insurance. If it weren’t for my family I don’t know what I would have done. No grown woman likes asking their family to help them. Having a chronic illness really puts things into perspective.

2. My dogs, aka “furkids.” I’ve always been a dog person. In my working years I worked as a vet tech. But when you are no longer able to work and you spend every waking moment with your dogs, you develop a different kind of bond than most. Realizing this and knowing that my two pit bulls are intelligent and willing to help me, I have trained them to assist me with various tasks that help me with my EDS and other problems. They are great at helping me pick things up and do the laundry. They’ve been there for my recoveries from my surgeries and help with my anxiety and depression.

Rocco and Leila give me a reason to keep going and to keep my strength up. When your doctor tells you you might end up in a wheelchair in a couple years and you get depressed, the best inspiration to keep going is the excited head tilt from a pit bull when you ask, “Do you wanna take a walk?” Taking a walk on the beach or swim with my dogs is pure heaven to me. And on the days when my body just can’t do it, there’s no better company to binge watch my favorite shows with.

3. My “better half.” My husband was lucky in a way that even though I’ve had my EDS since birth, it really didn’t start becoming severe for me until my mid-to-late-20s. That goes along with most of my other health issues as well. I’m sure if you asked him he’d have trouble explaining to you just exactly what is wrong with me. After all, the doctors have misdiagnosed me so many times throughout the years, it’s probably hard to keep up!  I know he gets frustrated with my ever growing list of diagnoses. “Why?!” he has proclaimed. While I can’t answer that for him, I can tell you that my tip for being married with a chronic illness is to take time out to have fun or go out for ice cream. Small gestures like taking me out for ice cream after I’ve been in an MRI for four hours or going with me to take notes at the doctor’s office (because my illnesses give me horrible brain fog and I will remember nothing).

It’s not easy to be the spouse of someone you see going downhill when they’re supposed to be in the prime of their life. To sit by as doctors who are uneducated and unwilling to learn say that your wife must be making it up because they simply haven’t heard of her disease. To my husband, I thank you for sticking up for me and defending me when these doctors didn’t believe me. I thank you for literally carrying me and dressing me when my body was too broken and worn out to go on. You weren’t embarrassed to push me around in a wheelchair through the grocery store while I was wrapped head to toe in blankets, my dysautonomia making it hard for me to regulate my temperature after surgery. You were proud to make me giggle as we had to use the family restroom in Target because I was in a wheelchair. You’ve seen me on my worst days and I’m sure that was scary.  I love you and promise to be there for you the same way you’ve been here for me.

4. My real-life friends. There are very few of you left. In some parts this is due to my health, in some parts this is due to me moving away (an effort to feel better in a warmer climate). But the few of you that are left rock. You’ve brought me special gluten-free snacks when I was traveling for surgery or moving. You’ve checked in because I’ve been silent after surgery and you knew I was in a dark place. That’s what friendship is about.

5. My online friends. Let’s face it: Having multiple chronic illnesses that limit your mobility and energy means you don’t get out a lot. I’m not out meeting new friends or hanging out with people like the average person might do. How do I “meet” new friends? Social media. These are people that, believe it or not, I’ve formed close bonds with and I know I can talk to when my husband is tired of hearing me complain about my doctor not calling me back or being worried about new test results. Some of these women are people I’ve called in tears on the way out of a doctor’s appointment and I knew they could calm me down. I’m so grateful for friends like this who share my feelings and fears and can totally relate to what it’s like to live like this.

6. Publix. Yes, that’s right. I’m thanking my grocery store! Since moving down south, something that has changed for me is my dislike of grocery shopping. You see, it takes a lot of energy to walk all around the store, finding what I need and then unloading it into my car. The lovely Publix folks say, “Can I help you to your car with this?” You’re damned right you can! You can even come home and put the groceries away for me! They don’t do that, but they do push the cart out for me and unload everything and put the cart back. I can’t begin to tell you what a huge help this is. For me, lifting something the wrong way means I could easily dislocate something. Having someone offer to help me without me even asking gives me a sense of independence and eases my mind that grocery shopping won’t be such a huge chore and literal pain in my (braced)neck.

So in case my foggy, tired brain forgets to tell you, I appreciate all of you on this list. I love you all so much and am very grateful for what you do to help me get by. It’s not easy living with multiple chronic illnesses and a major change in the way you think life was supposed to go. But having a support system is key.

To learn more about how my EDS affects me and learn how you can help with my upcoming out-of-state surgeries, visit www.youcaring.com/HelpValerieFightEDS.