Self-Advocacy Q&A with Laura Lee MacPherson
Laura Lee MacPherson
Living with Hashimoto’s disease, sharing my advocacy as I navigate life as a content marketer and writer, emphasizing resiliency and acceptance.
Tell us a bit about yourself, your diagnosis journey and the invisible condition/s you are living with.
Hi! I’m Laura Lee MacPherson, living with Hashimoto’s, an autoimmune condition where my immune system is continually attacking my thyroid. Translation: near-constant chronic fatigue and chronic pain, as well as immune-based sensitivity to dozens of foods and chemicals.
I was diagnosed quickly, and I count myself lucky for it. Many people with Hashimoto’s go years without a diagnosis if the disease develops gradually and hormone levels fluctuate. In my case, the disease was triggered suddenly at age 40, developed rapidly, and came with extreme symptoms. I went from being very healthy and active to being physically unable to pull myself out of bed, with my hair falling out, flu-like muscle pain, and a variety of other symptoms—all within a few weeks. My doctor quickly put me on medication, which replaces the hormones that my thyroid can’t produce because it’s under attack. This medication helps significantly, but it doesn’t fix the dysregulation of my immune system or stop it from attacking my thyroid. So I still deal with a constant background of fatigue and pain due to the always-on immune response. When the immune system activity increases, the fatigue and pain are worse. That’s the medical professionals’ best-guess explanation anyway. As my endocrinologist says, the medical community doesn’t really understand the nature of autoimmune conditions or why so many people with autoimmune diseases experience chronic fatigue and chronic pain, even with medication.
I fought my limitations for several years after diagnosis. I was determined to figure out how to fix myself and tried every treatment I could find. Some things help a bit, and I’ve worked those things into my routine. I’ve learned how to manage my pain and fatigue so I can live as well as possible. Nothing has fully healed me, however, and I’m coming to a place of accepting that. (Some days I’m better at acceptance than others!)
My days are mostly filled with my work as a content marketing consultant for tech companies and speculative fiction writer. When I’m not at the computer, I love getting outside with my spouse and two furry children (my dogs Sweet Pea and Katy). I also volunteer regularly with Campaign for Southern Equality, an amazing organization that advocates for legal and lived equality for LGBTQ folks in the American South (where I live).
How would your friends describe you and your personality?
I’m a long-term Type A who’s trying to live at a sustainable pace now that I’m living with chronic illness. It’s hard for me to go slow, though! I love being active, and I love working for things I’m passionate about. I’m also very empathetic, and people tend to share their struggles with me. I find a lot of meaning and purpose in listening and offering support.
How has the invisible condition impacted your life?
I used to work 60 hours a week and volunteered a few hours weekly for three different nonprofits. I was able to do 12-mile day hikes, mountain bike on challenging terrain, and run half-marathons. I was constantly raising the bar for myself—and hitting my goals. I can’t do any of that anymore. I’ve had to scale way back and be flexible with when and how I work. In some ways, I grieve the loss, but in other ways I’m grateful. I no longer define myself by how much I’m achieving. My disease has forced me to reevaluate what’s important to me and what really matters in life.
Please share any experiences of stigma or discrimination that you have experienced due to your condition.
I went freelance a few months before I developed my illness, which was fortunate timing because I didn’t have to deal with workplace discrimination. I’ve shared my situation with a couple of trusted clients, but most of my clients don’t know about my condition. I meet my deadlines and produce good work (thanks to strategically working with my energy levels and working around pain flare-ups) so my clients are happy. I dream of one day being free to disclose to every client, but the reality is that there’s still a lot of stigma that can affect the ability to get hired.
Outside the workplace, I have experienced stigma. One example: Since my immune system doesn’t function properly, I wear a mask when in crowded indoor spaces. I’ve been glared at, yelled at, and told to remove my mask. I don’t “look ill,” so people make assumptions.
However, I’ve also encountered many people who are eager to make accommodations for me and happy to facilitate my needs. These people far outnumber the trolls and bullies!
What does self-advocacy mean and how have you managed to advocate for yourself? Any advice to share?
Self-advocacy is about self-respect. I want to live as meaningful a life as possible, and I’ll do what I need to to facilitate that.
From a medical standpoint, I’ve had to be proactive and ask for tests and bloodwork, and ask for referrals to specialists. I moved on from one doctor I didn’t have confidence in to find one I do. This is one of the most important things you can do when it comes to chronic illness, as your treatment success depends on it.
The hardest thing I’ve had to adjust to with living with my disease is accepting help. I hate asking for help. I’m happy to help others, and I enjoy it! I’ve had to learn that other people are happy to help me too, and I need to graciously accept help. Don’t be afraid to ask for help!
What motivates you to disclose your disability despite the courage it requires?
I think it’s important to note that you don’t always have to disclose. If disclosure will harm you, it’s ok to keep your medical information private. You don’t owe anyone that information.
That said, I do disclose as much as possible because I want to see stigma go away. In order to challenge false beliefs about people who live with chronic illness, we need to be visible, we need to make our voices heard, we need to point out the impacts of stigma and show that there is a better way.
What encouragement would you offer to someone living with an invisible condition who is considering whether to openly share their journey and experiences?
Start with your values and your goals. Is sharing your journey important to you? Why? Who do you want to share with? Keep these things in mind as you begin to share, as a North Star to guide you when you come up against stigma.
Find your support system, your safe people. There are people out there who will be cheerleaders for you, allies in your journey. These are the people you can go to when you’re feeling down or frustrated, who will support you and help you to keep going.
Bio: Laura Lee MacPherson is a content marketing consultant and speculative fiction writer who lives in the American South with their partner, two mischievous pups, and an ever-expanding collection of air plants.
Website: Ideally Content Consulting
Substack: https://doorstothesea.substack.com/