by Kadija Osman
Ever heard of Tick Borne Diseases? If not, then you’ve probably heard about one of the most common tick borne diseases (TBD) which is Lyme disease. It’s a serious illness caused by a bite from an infected tick and according to the Canadian Lyme Disease Foundation, “Ticks pick up the bacteria by biting infected animals, and then pass it on to other animals, including human hosts.” I caught up with a T. Sydney Bergeron Mikus, an activist for TBD prevention and treatment. She definitely gave me more insight into how she lives with her illness and what she’s doing to spread awareness. Here’s what she had to say.
Kadija: Before we delve into the more serious questions, can you tell me a little bit about yourself?
Sydney: My name is T. Sydney Bergeron Mikus, and I go by Sydney. I’m a writer, creator, speaker, and organizer from Lancaster, PA. I’m the founder and director of Simple Politicks, a platform for education and policy for tick-borne disease prevention, diagnosis, and treatment. I have a Scorpio sun, Pisces moon, and Cancer rising.
I’m nonbinary, queer, and disabled, but I pass for cis-het and enabled/neurotypical. People like myself have passing privilege, but, as a result, we’re often erased from our communities. That’s why it’s so important to me to speak up about the intersections of my identity.
Kadija: What is a tick borne disease and what harm that it can cause humans?
Sydney: Tick-borne diseases (TBDs) are infections you get from a tick-bite. At the time of writing this, we know of 16 TBDs. The most well-known and common, Lyme disease, is a bacterial infection caused by a spirochete, which is the technical term for a flexible, spiral-shaped bacterium. Lyme is the fastest-growing vector-borne disease in the United States, with over 329,000 new diagnoses each year. (“Vector-borne” means the disease is transmitted via arthropods, or insects. Zika, for example, is a famous vector-borne disease.) Lyme can affect all body systems, and can be very difficult to treat, or even diagnose. It comes with a whole host of symptoms, and mimics other diseases. For example, it can cause physical symptoms, such as rashes, fatigue, fever, and muscle and joint pain; cognitive symptoms such as difficulty with thinking, memory, and word recollection; and psychiatric symptoms such as anxiety, irritability, depression, and psychosis. This is just a small sampling of the symptoms linked with Lyme. Other TBDs can be just as detrimental, or worse, for your health.
I personally have late-stage neurological Lyme, bartonella, and ehrlichia. My symptoms became so severe that I had to stop going to college, drastically cut down on work, and move in with my mom, only one semester away from graduation.
Kadija: Can lyme disease be hereditary?
Sydney: One of the scariest things about Lyme disease–and all tick-borne diseases–is how much we still don’t know. No evidence that I’ve seen indicates that Lyme can be hereditary. However, some research shows it can be transmitted during vaginal sex, pregnancy and childbirth. International Lyme and Associated Diseases Society (ILADS) scientists support that it can be vertically and sexually transmitter. The Centers for Disease Control and Prevention (CDC) and Infectious Disease Society of America (IDSA) deny these claims and consider Lyme to be only transmittable via tick bites. I always take everything the CDC says with at least a grain of salt, because they have a history of being late to the game when it comes to public health crises. See, for example, the AIDS epidemic.
Kadija: How do you feel your gender identity plays a part in your activism?
Sydney: In health, as in all parts of life in colonized spaces, norms and research revolve around white, cis-het men. Cis women and cis men respond differently to infections, and testing is based on the antibodies cis men develop when infected by Lyme. There’s little, if any, research on how trans and nonbinary people uniquely respond to TBDs.
For years, women battling chronic Lyme have been told their disease doesn’t exist. As a nonbinary person AFAB (assigned female at birth), I’ve received this same dismissal. Doctors told me that I should do yoga to deal with psychiatric symptoms, and that my pain was from having overly-flexible joints. Doctors told my mother that she was stressed and going through perimenopause. A friend of mine was told that she was just hormonal and should try to get pregnant. Doctors didn’t, and often still don’t, want to look for the underlying cause. Until the CDC and IDSA update their definitions of TBDs to include research based on all genders, this sexist erasure will continue.
Race plays a huge part in this as well. Most visible TBDs narratives are told by wealthy, white, cis-het folks, because that’s who has access to accurate diagnosis. Instead of writing off Lyme and other TBDs as a rich white person’s disease, we have to consider the barriers preventing marginalized from accessing accurate diagnosis.
Kadija: How old were you when you first experienced a serious symptom of your tbd (tick-borne diseases)?
Sydney: I was probably 13 when my symptoms began. Over the years, they continued building. Last August-January, they built up to a severity that prevented my education and work. Before then, they’d been an annoyance I could work around. Now, six months into treatment, they’re still bad. Every time I feel like I’m improving, I hit a hurdle with treatment. First, I was allergic to heparin, which is necessary for PICC Line usage, a common method of treating Lyme and some other TBDs. Recently, I ended up in the ER with heart palpitations and am off all my meds until we figure out what caused them.. The good news is I’ve gotten better at knowing and working with my limits.
Kadija: What have you learned from being diagnosed with late-stage neurological lyme, bartonella, and ehrlichia?
Sydney: I’ve learned that many editorials and opinions around wellness position health as something controllable, even though it’s not. There are preventative measures you can and should take to protect yourself, but a lot of health is up to chance. You can have a genetic predisposition for developing certain diseases, and be affected by socioeconomic factors. In the case of TBDs, location, class and identity play a large role in your accessibility of early and accurate diagnosis and treatment. I have economic privilege that allows me to access appropriate and experimental treatment, but many aren’t so lucky. Insurance typically only covers the ELISA and Western Blot tests, which aren’t consistently reliable, and 28 days of antibiotics for bacterial TBDs, even though research shows that tick-borne bacterium–especially spirochetes–can outlive that. If you have late-stage TBDs or otherwise need treatment beyond those 28 days, or can’t find a diagnosis and want to visit a specialist, in most cases, you’re either paying out of pocket, or withgoing diagnosis or treatment.
Kadija: What assumptions do people usually make about lyme disease?
Sydney: That it’s rare, and curable. In truth, it’s extremely common, and rapidly becoming an even more severe epidemic as climate change leads to more ticks. There is no known cure. People also don’t understand that it attacks all body symptoms, and causes temporary and permanent disabilities, and can cause death.
Kadija: How can neurotypicals help those with disabilities with everyday tasks?
Sydney: First off, they can do research and acknowledge their privilege. Oftentimes, people with neurological TBDs have difficulty with concentration, reading, and writing. This can make it a challenge to educate others. Everyone’s experience with neurological diseases is unique, but you can learn the basics through research, then get into specifics with the people in your life. I’m always happy to spread accurate information and awareness, but it gets annoying answering the same, easily-googleable questions over and over again.
My main neurological and cognitive impairments are with concentration, memory, depression, anxiety, and sensory sensitivity. Some things that help me:
- Subtitles, for when I’m having difficulty with auditory processing. Subtitle your social media posts! It doesn’t take long, and it helps people with auditory processing disorders, and people who are D/deaf or hard of hearing.
- Quiet and dark spaces. I need these for when I have sensory overload, which worsens many of my symptoms and makes me feel nauseous. It’s also part of why I’ve focused my activism on one-on-one or small-group situations, instead of mass protests. Huge events like marches can be really unsafe and inaccessible for me.
- Be patient. I have difficulty with word recollection, including everyday language and names. I even forget my best friends’ names, and I talk to and about them daily. Refresh my memory if I forget who you are, what we’re talking about, or a specific detail.
- Don’t make me multitask, and try not to interrupt when I’m focusing on a task. Brain fog makes it difficult to concentrate, and once I’m brought out of focus, it takes a long time to zero in again.
- Respect my aids. Sometimes I have to wear sunglasses indoors because of my light sensitivity. Sometimes I have to use a cane because of my dizziness. I use these aids so I can exist in a world that isn’t designed for me.
Kadija: Was there anyone who influenced or encouraged you to begin your activism for tick borne disease?
Sydney: Largely, I’m influenced by the fact that I don’t want people to suffer like I do. I’m also very driven by my passion for the people I know who likely have Lyme or other TBDs, but can’t access treatment nor diagnosis due to inaccurate CDC and IDSA guidelines, and socioeconomic barriers.
Kadija: How has confronting your disability and being very vocal and open about it when meeting new people and just in your everyday life, changed you?
Sydney: It’s made me care a lot less about people complimenting my appearance. People frequently tell me “You look great!” when they learn I’m battling TBDs. I expect they mean it as a compliment, but it erases the struggle and conflates health to appearance. Chronic illnesses are often invisible.
I bring up my diseases and the disabilities that accompany them with most people I meet, because they’re an important part of my life and relationships. I need people to be understanding and willing to work with me and the hurdles my health creates. I also need people to realize that I’m no less of a person because of my infections. I can still accomplish great things.
On a positive note, it’s made me appreciate the moments when I’m feeling healthier. My symptoms fluctuate, and I’ve learned to take advantage of the times I’m feeling good.
Kadija: Can you tell our readers where to go to learn more about tick borne disease or where to make donations to help progress research?
Sydney: Sign up for updates on my new platform, Simple Politicks. We’ll be releasing educational content about TBDs and how you can get involved and vote for policy that helps with TBDs prevention, diagnosis, and treatment. We’re also in the process of building a board and becoming an incorporated nonprofit. In the meantime, you can support our startup efforts by volunteering your time and skills.
My favorite nonprofit funding research is Global Lyme Alliance. GLA has raised over $10 million in research grant funding, which is necessary because federal funding for TBDs research is very low.
Learn more about Tick Borne Diseases, ableism and more by following Sydney on instagram!
Meet the Writer:
Kadija Osman is 17-year-old writer born and raised in Toronto. She is in her senior year of high school at Etobicoke Collegiate Institute and starts her first year at Ryerson University in September. She is an aspiring journalist and mostly focuses on writing articles. Being a Muslim girl and having an interest in these things and pursuing them in life is seen as odd and almost always frowned upon, especially within the Somali community which makes her want to break free from that. Kadija wants to prove that she can love art and the entertainment industry and still keep a close connection with her God.
firstname.lastname@example.org | @kadija.osman