“Don’t try to do things alone. Find your allies and work together towards a common goal and give and receive support along the way through the challenging times, because they will come!” – Megan Densmore

March is Autoimmune Disease Awareness Month; a month to raise awareness and share the stories of those living with often debilitating diseases that have no physical symptoms. Diseases often referred to as invisible diseases.

Megan Densmore has been living with fibromyalgia for years, a diseases that inflicts musculoskeletal pain, fatigue, sleep, memory, and mood issues; all symptoms that cannot be seen from the outside. As this week’s #WCW Spotlight, she shares what she’s learned living with an invisible disease and why she decided to turn her journey into a documentary.

Photo credit: Lisa Haefner

Me: For those that don’t know, what exactly is an invisible disease?

Megan: An invisible disease is anything that is a diagnosable medical condition that has no visible symptoms. This classification includes things like autoimmune and neurological conditions (Multiple Sclerosis, Rheumatoid Arthritis, Chron’s Disease, Fibromyalgia, Chronic Fatigue Syndrome, etc.) as well as many types of cancer and things like Type 1 Diabetes. The person has very real symptoms and none or nearly all of those symptoms are invisible to the outside observer. Essentially this person is sick but does not look sick.

Me: Growing up, what was it like to live with an invisible disease? How has your life changed since you were first diagnosed with fibromyalgia?

Megan: It was very challenging growing up with an invisible illness because most of the time I chose to pass as healthy instead of having difficult conversations with people about what my body felt like. I tried to live a normal life and my body fought back dramatically. Because of my choice to pass, I often struggled with people believing me when my symptoms did flare up and was told it was “all in my head” or called a hypochondriac. I don’t blame the people around me – they didn’t understand – I take responsibility for my unwillingness to say no and create boundaries and develop a healthy lifestyle. Now I am transparent about my challenges and I live my life according to a lifestyle that allows me to feel healthy and energized everyday. I have also loved getting connected to others with similar challenges. When you open up, it is amazing who opens up around you and what you don’t know about them! I would say that now I am more patient with myself and also more patient and understanding with others.

Photo credit: Lisa Haefner

Me: Are there things people do or say when they meet you that you wish they could be more aware of?

Megan: This doesn’t impact me as much now since my health is so good, but one of my friends who is thriving with MS has shared some things I love that I will pass on. One of the biggest things is that people want to help and say things like – have you tried juicing? I heard that will heal you? What about x, y, z diet? Don’t you just need more sleep or more meditating or more fill in the blank? But you look great! You don’t look sick! Can’t you just push through? I do acupuncture/massage/weightlifting/fill in the blank and it has cured my acid reflux (or other way less debilitating, also invisible health condition). Or it becomes a who has it worse conversation and they try to relate their life challenges to yours, like, “it could be worse you could have lost your job! Or lost your home! Or gotten in an accident! You could be in the hospital or you could have cancer!” You get the idea.

Me: What are some of the things most people take for granted that consume those living with an invisible disease?

Megan: You have to pace yourself ALL THE TIME. Sometimes you can’t power through. My lifestyle is necessary and not a choice and there is an impact if I get lax on how much I am sleeping, how I am eating, if I take my vitamins, if I get my exercise, etc. I also have to manage my stress level OR ELSE. I wear my stress on my sleeve in the form of anxiety and panic attacks and the damage is swift. This goes back to pacing myself.

Photo Credit: Lisa Haefner

Me: Why is it so important to you to raise awareness and get the conversation started concerning invisible diseases?

Megan: Life is harder than it needs to be for people in this population. They shouldn’t have to pick their battles about passing or not and they shouldn’t fear for their livelihoods. The number of people in this category who are on disability is staggering. In most cases, they want to work but have trouble finding employment that will be understanding and work with them or allow them to work from home or on different hours. Instead, they are pushed into disability or find more success in non-traditional employment as I did. I found it much easier to work flexible and odd hours when I was still sick in the fitness industry than it was to work a typical day job on a regular shift.

Me: Currently, you are making a documentary, Invisible, about your personal experience with fibromyalgia. What do you hope to change by sharing this documentary with the public?

A: We hope to create connection. We will share my story and the stories of 5 other people living with fibromyalgia. In our own ways, we are all thriving, we are not suffering. We are living. We hope to inspire people to love themselves more and to be more loving and understanding toward others. To remember that we have no idea what is happening to that person sitting on the subway next to us, unless we ask. We also want to start a larger conversation about access. Without access to options and treatment or education for all of us about what its like to be living with an illness like this, there can be no progress.

Photo Credit: Lisa Haefner

Me: What has been the most surprising part of making this documentary? What about the most inspiring part?

Megan: The most surprising part has been how warmly the concept has been received and by so many people. People have given us money, donated their time, worked at a discounted rate, written about us on websites and blogs, shared our content with their friends, family and social media. People have called, emailed, messaged me to share how grateful they are that we are taking this on. People have given us MONEY. The most inspiring part is that I know that this film will make a huge impact and I have a feeling it will be even more powerful that I can conceive in my imagination. I have always known I was put on the planet to do big things and I am inspired, despite many setbacks along the way, to stay the course.

Me: For every screening of Invisible, you hope to partner with a non-profit in the community. What inspired you to include a donation piece for each screening?

Megan: We did partner with One Healing Arts Company for all fundraising of the film up to now, but they don’t directly benefit invisible illnesses

The donation piece is both practical and from the heart. If we are bringing in money in some way, we like to give our donors the benefit of a tax break. The production itself and the production company are for profit, so we can’t directly offer a tax letter without a non-profit partner. That said, benefiting a non-profit and bringing them money and free advertising and recognition is more than just a side benefit. It is who we are and why we are doing what we are doing.

Photo Credit: Lisa Haefner

Me: Has giving back always been a part of your life? Or something that developed later?

Megan: I was raised with the mindset that giving back was just what you did. My mom has worked as a consultant for numerous not for profit organizations and done fundraising for them. I have also worked for non-profits over the years and I love the passion that drives them to run business that way. I believe in being generous. Every time I donate my time or money or create an opportunity for another person, I receive. Whether it is simply the feeling of gratitude or whether it is my own prosperity increasing, it is always an amazing feeling. This is not optional for me.

Me: Right now, your focus is on sharing your experience with the hope it inspires others to be more understanding of those living with an invisible disease while also building a community for those living with an invisible disease. Where do you ultimately hope to go with the Invisible film?

Megan: We want this to reach as many people as possible first. The film is only part 1 of a bigger conversation, as I mentioned before. We have a vision for this film to be turned into a full series exploring all invisible illnesses. We want to have speaking engagements where we work with these invisible illness communities and health care providers and family support groups on how to create harmony so all of us can thrive. I’d love for someone of stature in the advocacy world, like Oprah, to highlight this topic. And for our production company, this film is a launching pad for us to keep creating art that inspires social change. We’re not afraid to ruffle some feathers because I lived this…I’m not making it up, its not fiction…so who, if not me and my partners, will make this as big as it can be?

Photo Credit: Lisa Haefner

Me: In addition to your documentary, you also train + compete in kettlebells and are a certified pilates instructor. What keeps you motivated to train so hard, despite everything else you have going on?

Megan: I stay motivated to train because I am grateful every day that my body works well enough to! There are certainly days where I am tired or don’t feel like it, but I love working towards new goals and challenges and keeping sight of that helps a lot. I am addicted to how I feel after a workout and I remind myself of that too! I have also found that dedicating a lot of time to physical activity allows me to be very productive in less working hours. I have never been very good at sitting still for very long!

Me: What is the one piece of advice you would want to share with someone who wants to follow in your footsteps by of using their own unique talents and life experiences to give back?

Megan: I would tell them to know themselves well enough to know what they are passionate about and surround themselves with a team of people who are passionate about the same things. Don’t try to do things alone. Find your allies and work together towards a common goal and give and receive support along the way through the challenging times, because they will come!