Interview | Spoonie Warrior

Saidee Wynn discusses life with chronic illness and her candid new book

Saidee Wynn, aka the Spoonie Warrior

32 year-old Saidee Wynn is the author of a new book about life with disabilities and chronic illness. A product of the successful blog, Spoonie Warrior, the book is a candid first-hand account that will make you laugh, cry and shout, “me too!”


1. Saidee, could you please tell us about yourself and your experience with POTS, EDS and PTSD?

I currently live in Atlanta, Georgia with my husband and six year-old daughter. Before POTS (Postural orthostatic tachycardia syndrome) hit me hard, I was a middle and high school teacher. I taught history, literature, and drama. I now work part-time as a copywriter and do my own writing whenever I actually have the energy to do so.

When I first got sick with POTS, I couldn’t keep up with my regular work load. My boss was very accommodating and worked with me. I started working part-time on what we hoped was just a temporary basis. That was in the middle of the school year. Towards the end of the school year, I knew that I’d have to make a decision about whether or not I could continue to run the classroom as a lead teacher.

I wasn’t getting any better and my doctors said they weren’t sure I would, so I made the decision to step down as a lead teacher. I continued to work part-time for a little while, doing about 3 hours a day, but after a year of attempting to do that, it was still too much.

Since my health is so unpredictable, it was difficult to stick to any kind of set schedule or keep up with deadlines. I ended up missing the last six weeks of my final year of teaching because of an injury. That was just over a year ago, and I still miss it.

I’ve had EDS (Ehlers-Danlos syndromes) my entire life, I just never knew it. EDS causes a lot of chronic pain as well as frequent dislocations and subluxations. There are a lot of things that I used to think were normal that I now know aren’t normal. Most things have to do with how the body moves. With EDS, our collagen is faulty, and collagen makes up the tissue that holds your joints in place. Actually, collagen makes up a good portion of your body.

Anyway, I always knew I was more flexible than other people, but I didn’t always realize to what extent. Those with EDS have a habit of sitting in weird positions, especially keeping our legs up on a chair or tucked in. I didn’t realize this wasn’t a normal thing that everyone did until people started pointing out to me how weird it was that I did that. I started paying attention to others and noticed no one else did it. I also didn’t realize intense joint pain wasn’t normal. I was always told it was “growing pain” and just assumed everyone else was better at dealing with it than I was.

I still discover strange things that aren’t really ‘normal’ all the time. My husband and I have a game of sorts where I’ll do something and ask, “EDS or normal?”. It usually means moving my body in some way that I didn’t know others couldn’t do. Also, being able to zip up my own dresses or put sunblock on my own back. I thought people were just being lazy when they asked others to do that stuff for them. I didn’t realize it was because most people legitimately can’t reach.

I’ve also had PTSD (Post-traumatic stress disorder) since childhood, but never recognized the symptoms or the depth of my trauma until a few years ago. It affects how I react to the outside world and other people. My brain can perceive danger even when there isn’t any danger around.

POTS didn’t really hit me until about 2.5 years ago, but it changed my life completely. I used to be an incredibly active overachiever, and now I celebrate having the energy to take a shower! POTS is a type of dysautonomia, which is a dysfunction of the autonomic nervous system. Think about everything your body does without you thinking about it, like breathing, digesting food and circulating blood. That should give you a rough idea of what parts of my system are affected – basically all of them.

Obviously, all of these conditions have a pretty big impact on my life. I can no longer hold down a full time job. I can’t dance, act, or sing like I spent my whole life doing. I’ve had to create a totally new ‘normal’, which isn’t easy to do and definitely involves a grieving process. But, somehow, I’m making it work.

2. You are also a wife and mother to a young daughter. How does your disability impact on family life and how have you all adapted?

The biggest impact is that I can’t do everything I would like to do with my husband and daughter. I can’t go play outside, have dance parties, ride bikes, or even play in the park. I have heat intolerance and live in the south, so I’m pretty much restricted to the indoors most of the year.

When my husband and I were first dating, we used to take a lot of road trips together, even going camping on the beach, but now I can’t handle long car trips. We mostly just spend time watching Netflix and Hulu.

Matt, my husband, picks up a lot of the slack as far as doing the things I physically can’t do. He does all the driving, shopping trips, and play time duty. While I can’t do all the physical things I wish I could, I can still be there for my family, emotionally. We read together, watch movies, laugh, and play (gently, of course).

My daughter still sometimes struggles with the fact that I can’t do everything she wants me to, and will sometimes lament by saying, “I wish you weren’t sick”. Despite this, we still have a very strong relationship. It’s pretty normal for kids to wish something about their parents was different, right?

3. How do you explain your condition and limitations to your young daughter?

There’s no one way. Every day she gets older, bigger, and smarter, which changes how we can talk about my illnesses. She knows I have “chronic illness” (yes, she actually uses those words), and that it means I’m always at least a little sick. But some days I feel better than others.

She also knows that I get dizzy when I walk or stand too long, and can’t be around lots of bright lights and loud sounds. When we were getting ready to go to her kindergarten graduation she said, “Mommy, it might be loud, so you should probably bring your earmuffs”. It was sweet.

There are two great books on Amazon, written by Moms with chronic illness, that we sometimes read. This helps her understand a little better. They are Mommy Can’t Dance and Why Does Mommy Hurt?

4. When and why did you decide to blog about your life and experiences with chronic illness?

I’ve used writing as a form of self-expression and therapy my whole life. When POTS came along and I suddenly couldn’t do any of my other passions anymore, I really leaned into my writing.

One day, I got the idea to start a blog and before I knew it I had bought a domain name. I thought I’d be lucky to even get one reader, so I’ve been overwhelmed by the response to my writing.

My goal has been to keep writing as long as I enjoy it, and I’m still loving it. Although, I have had to take breaks due to health issues or because of things going on in my life, I haven’t given up on it yet.

Most popular blog posts: “Why You Should Stop Spreading Inspiration Porn,” “Disabled: Say the Word,” and “Dear Doctors, No It’s Not All In My Head.”

5. In what ways have you benefitted from blogging and how does your blog, Spoonie Warrior, helps others?

I get so much from blogging. It gives me a great outlet for my experiences and a sense of purpose. I’m able to connect with other people and feel like I’m making a difference in some small way. The greatest feedback I get from my writing is, “oh wow, you too? I thought it was just me!”

I like to tell it how it is, and give a real look at life with chronic illnesses, rather than the polished, sugar-coated version we often see. People seem to need to see that. It helps them feel less alone in their struggles, which is a big deal because life with chronic illnesses can be so isolating.

I think it’s important to remind people that everyone is affected differently by chronic illnesses. Just because I was unable to continue teaching, it doesn’t mean someone else with POTS won’t be able to, so don’t be discouraged. And just because I’ve been able to blog and publish a book, it doesn’t mean others should feel ashamed for not doing the same.

We all have different levels of ability and this can change with every passing moment. So, try not to compare yourself to others or get bogged down with what we think we should be doing. I don’t ever want to be the example someone’s doctor/parent/teacher uses to say, “well, she could do it, so why can’t you? You’re just not trying”.

Do what you can, when you can. Don’t put your health at risk in order for others to feel more comfortable with your abilities.

6. Can you tell us about your first book – a collection of short essays – entitled, ‘Tales of a Spoonie Warrior: Chronicles of the Chronically Ill’.

I wrote the book because there isn’t a lot of literature about life with chronic illness/disability, actually written by someone with a chronic illness and/or disability.

There are a lot of self-help books and novels turning the lives of disabled people into inspiration porn or tragedies, but not much about the everyday realities of our lives. That’s a book I would have loved to read when I was first diagnosed! And, they say you should write a book you would want to read, so I did.

It’s mostly aimed at other people with chronic illnesses and disability, however, there’s also some stuff in there for healthy people who just want to know more about our lives and struggles.

The tone is very conversational. Some of it is funny and sarcastic, some of it is gut-wrenchingly sad, and there is also anger. All of it is very personal. It reads like you’re sitting down to coffee with an old friend. I think readers can expect to find themselves within the pages of my book and walk away from it knowing that they are not alone.

Saidee’s book is available to buy on Amazon


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