BY LISA MARIE BASILE
As someone with an autoimmune disorder (Ankylosing Spondilitis) that causes a whole slew of issues — Uveitis, mainly, along with near-constant joint inflammation — it can be hard to talk about with others.
Having an invisible illness can make you seem like you're complaining for no reason or that you're making it up. I know you, Nadia, have Lyme disease, and it causes a bunch of other issues. You've written, "Every task—no matter how complex or simple—is a strain and a struggle. I want to do so much, but there’s only so much I can do. I have to forgo some activities in order to do the others. All the while trying to not push myself to the limit, beyond my maximal capacity. I know I will pay dearly with my body for the weeks to come otherwise. I have to use my spoons wisely."
What sort of problems do you deal with on a daily basis? What does Lyme disease do to the human body—and spirit?
Firstly, I am sorry you have an autoimmune disorder. It must be tough when you get a flare and especially difficult when you try to explain to others what you go through, but they don’t get it because it’s "invisible."
That said, I experience pain every day. It is very exhausting both physically and mentally. I have to force myself to be stronger and to power through by detoxing, dieting, and taking supplements and Lyme treatment religiously, thoroughly researching anything that may alleviate my acute symptoms or help me live a healthy life in the long run, and of course keeping my spirits hopeful and positive, that someday I will go into remission.
I have my meltdowns. I cry hysterically. I say grim things. I make sarcastic jokes. I’m only human and it is my way of coping and releasing my stress and pain when things get particularly overwhelming. I am grateful I have my family, my husband, and my in-laws who are very compassionate, supportive, and encouraging. I can’t imagine how my life would turn out to be if I didn’t have a strong support system. It’s very important for the chronically ill.
Lyme is a very fascinating disease to study because it is smart as hell and, consequently, hard to diagnose. It is known as the Great Imitator of other autoimmune illnesses including Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Parkinson’s, Alzheimer’s amongst others, and it knows how to adapt in the physical environment and the host’s body. Lyme bacteria dies and rebirths every month and migrates from one organ to another and changes forms to protect itself.
Typically, people with acute Lyme experience flu-like symptoms such as fever, headaches, inflammation, and muscle and joint pains. If not treated in time, it becomes chronic and incurable. Symptoms become more devastating and debilitating affecting the brain, the heart, and the nervous system. While people with chronic Lyme can live a long life, they can potentially die from complications, side effects of prescription drugs that suppress the immune system, or severe die off symptoms from Lyme treatment.
It is quite terrifying because there was a time a few months ago when I stopped treating Lyme and my co-infection Babesiosis because my treatment was no longer working and I found out I have a gene mutation that makes it difficult for me to get rid of toxins.
I also needed a break from all the drugs and supplements I was taking, and I noticed my health deteriorating exponentially. If for two years of my diagnosis I was only dealing with fatigue, chills, night sweats, joint pains in my legs, occasional hallucinations, mood swings, bouts of depression, brain fog, and interstitial cystitis, within months I started experiencing symptoms of IBS, endometriosis, migraines, chest and solar plexus pains, tremors, and anxiety.
However, I do have a set plan now: I will be doing testing to make sure my thyroid and heart are okay because the chest pains and the irregular heartbeats really concern me; I’ve resumed my herbal treatment and am detoxing heavily, and I do reiki and started acupuncture. I now try to be more active physically filling my days with different activities and outings. It really does help me keep sane and my pain under control even if I have to push myself at first.
Do you find it hard to talk about with others? How did you make it so others can understand the tangible quality of your pain and discomfort?
It used to be hard for me to open up about Lyme because I am a very private person, and I also did not have a clear picture of my disease until two years ago. It was an odd feeling opening up about it the first time and being so vulnerable with the world, but it got easier along the way. I tell myself that it is important to spread awareness about such a serious systemic condition, a condition that CDC underestimates and deems acute only and curable within a month of antibiotics therapy, and if you still experience symptoms after that, you now have what they call the "Post-Treatment Lyme Disease Syndrome." It is very infuriating.
Likewise, if people suspect they have Lyme or their loved ones suffer from it, I would like to be a person they can turn to for advice and empathy, knowing how hard it can be living and coping with a chronic illness.
I learned that chronic illness can strip you of a healthy social life and friendships, which was hard to accept at first. But it is also a blessing in disguise, because those who aren’t meant to be in your life leave one day or another and those who truly care about you stick around. They may not fully understand what you go through, but they mean well. I try to educate them by being as specific as possible as to why I can’t come see them today and why I can’t do this activity and what is going on with me and what Lyme does to my body. My job is to enlighten them, their choice is to accept my information or not. Fortunately, my family understands and supports me. My friends are also very understanding and accepting. I’m grateful for that.
But not everyone is as lucky as me. All I can say is that because living with chronic illness is taxing enough as it is, it is primordial to rid yourself of all stressful triggers and surround yourself with anyone who will support you whether it’s a Facebook group, a local community, or even a professional. It makes a huge difference to have at least one person empathizing with you.
We've talked a lot about chronic illness and disability at Luna Luna. It's a topic that many others are focusing on, too. People feel the need to speak out. Why do you think that is?
People who have a disability or suffer from a mental illness or a physical condition are frustrated. There is social bias that in order for you to be sick you have to look the part or for you to be disabled you have to be in a wheelchair. Meanwhile most illnesses can’t be seen with the naked eye, but the symptoms are real and excruciating for the sufferers. And disabilities can be nuanced and unnoticeable too. So lack of education, awareness, and understanding creates and cultivates a society and immediate milieu with selective compassion and intolerance.
On top of that, others who have no idea what it is like living with a disability or a chronic condition like to speak for us and our experiences. It’s not the place of able-bodied and healthy people to steal our voices. We just want to be able to express what we go through in a safe outlet and to close the gap of being misunderstood, underestimated, and devalued. Hopefully with more people speaking up and sharing their stories we can achieve better understanding in our society and in our homes.
How does living with chronic pain disrupt your day to day and your relationships? How does it take its toll, in terms of cost?
I am unable to work full-time in an office because of my constant pain and fatigue. I need to be able to wake up when my body "wakes up" and take a lot of breaks when I get tired or cannot focus anymore. I do freelancing editorial work from home when I can. Otherwise, my day to day is all about getting some light exercise, eating enough and right, detoxing, taking my treatment, resting, and coming up with fun activities to do. To a healthy person it may seem like I have the perfect life devoid of real responsibilities, but in all honesty, I wish I was able to work full-time and run errands and see people whenever I want to, but I physically cannot do a lot of things or have to truly force myself to do them. I know my limitations.
It’s really tough being housebound by my symptoms and having to take care of myself 24/7 to keep alive and living. I think if healthy people were to imagine being sick with the flu for the rest of their life, they wouldn’t find it fun. Even being sick for a week is exasperating, you just want to be productive and enjoy life.
I’ve lost touch with quite a few friends because I wouldn’t be able to go out much or do the same activities as them. And I didn’t appreciate being called or thought of as "lazy" by a few, so I willingly lost touch or kept our friendship distant with some of them. Another factor that affected my friendships is the fact that I used to live in Montreal and now I reside in New Jersey with my husband and can’t see my family or friends as often as I’d like to. I try to nurture my friendships here, though the sprouting process is slow because of my condition, but steady. I’m okay with that.
Of course, the fact that I’m sick has made my family really worried about me and participate more financially in my expenses because my husband and I can’t pay for everything ourselves. I hate to worry them and feel guilty and like a burden sometimes, though I know I shouldn’t. And indeed, the relationship between my husband and me is a complicated one. We love each other and are happy to be together, but what you’d think would come much later in life—sickness—has already been present in our life from the start. Indeed, it takes a toll on both of us physically and emotionally. But we support each other through it all, telling each other that it will get better, that we’ll make it through. It helps.
In 2015, I didn’t need to go see many doctors besides my Lyme specialist on a monthly basis, but this year was a special case. I lost count of how many times I ended up in ER either because I burned myself and infection got in or had a severe migraine that over the counter medications wouldn’t relieve at all or experienced cramps and irregular spotting or harsh side effects and toxins overload from prescription drugs that worsened my Lyme symptoms. And of course the bills for emergencies and procedures I needed done for other autoimmune issues were devastating before we reached our deductible with my husband’s insurance. Sadly, while the healthcare service in the States is better than in Montreal, the costs are unbelievably high, especially in the hospitals.
And chronic Lyme isn’t something non Lyme-literate specialists know much about or are ready to tackle or acknowledge, and the insurance companies don’t cover the costs because it is burdening and the chronic or late stage form of it isn’t a "legitimate" disease according to the system. Hence the gargantuan costs, and the fact that Lyme sufferers end up in ER so often.
Do you recommend people turn to forums or communities online for support? Do you find that this helps you—either in a real way (doctor recommendations, etc.) or in an emotional way? Are there any groups you specifically recommend? Is there anything you've learned while dealing with a chronic condition that you'd like to share with others?
Absolutely! I learned more about Lyme disease from forums and online organizations that support education, research, and physician training for Lyme than anywhere else. Facebook groups such as Lyme disease group, Lyme Disease Support and Wellness, and Lyme Disease Survival & Wellness Group are tremendously helpful in terms of information and bonding. ILADS and Lyme Disease Association are useful to get referrals of physicians who treat Lyme, because you can’t really find any specialists by searching on Google.
Tired of Lyme is an informative site, and that’s where I found out what kind of diet I can maintain with Lyme and what I can do to detox. Also, Dr. Marty Ross, a renown LLMD, gives free webinars every Wednesday at 5:00 pm Pacific Time where you can ask your questions about Lyme. If you miss one, you can always view the previous recordings online. He’s very knowledgeable and shed light on my questions that no one else could answer. A valuable book to invest in is Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz.
I learned that Lyme can mimic other autoimmune illnesses or you can have both Lyme and an autoimmune disease that is exacerbated by it. Likewise, if you have Lyme, be careful with prescription drugs because many of them suppress the immune system causing worsening of Lyme symptoms. And if you have an MTHFR gene mutation, it is difficult detoxify all on your own from drugs, allergies, food you can’t tolerate, environmental toxins, mold, heavy metals, Lyme bacteria-released toxins, etc. It must be addressed because it makes you feel sicker regardless whether you have Lyme or an autoimmune illness.
If you suspect Lyme disease, one of the best labs that actually specializes in Lyme testing is Igenex. I would not waste my time on ELISA tests and Western Blots, they’re inconsistent, inaccurate, and outdated. More often than not Lyme comes with co-infections, but they are extremely tough to diagnose as some of them hide in tissues rather than in the bloodstream. A good Lyme specialist will be able to clinically diagnose you with Lyme and any other co-infections you may suspect.
Also, if you have been on a Lyme protocol for over a year or two and haven’t seen any improvements whatsoever, perhaps the protocol isn’t right for you personally or you have yeast overgrowth worsening your illness or you have a MTHFR mutation disabling you from detoxing properly.
Whether you have Lyme or any other chronic illness, you should approach it from a holistic point of view. Pain management, physical therapy, and prescription drugs are good sources of managing the pain and inflammation, which is key because otherwise your immune system will just go ballistic.
But it is equally important to maintain a healthy physical and mental lifestyle by eating anti-inflammatory foods, exercising even if it means just taking leisurely walks or doing house chores, going to bed at the same time every night and waking up at a reasonable hour. And anything else you think may help you deal with the pain and stress that goes along with it—engaging in doable fun activities or hobbies, talking to a supportive relative or friend or psychologist or attending group therapy sessions, meditating, doing breathing exercises, seeing a naturopath, going to energy healing workshops, etc. And if you relapse or push yourself too hard one day, be gentle and loving with yourself at your worst and give yourself some time to rest and recharge.
How do you think people with a chronic condition can live most fully?
I know you wrote, "I have responsibilities like anybody else. I cook. I clean the house. I take care of my loved ones as best I could. I work as much as I can handle it. I have goals I want to accomplish. I have dreams I want to realize. I want to travel, see Paris before I die. I want to go to events where my soul will grow, my heart will elate, my mind will expand. I want to soak up the sun in Maui. I want to get drunk and not feel the consequences of it the next day. I wanted to have children. I think I still do. Most of all, I want to know what it’s like to be in the shoes of a healthy, lively person."
For those who are physically in pain a lot of the time, how do you think they can achieve a decent quality of life? How do you try to make plans for the future and retain some hope and excitement—despite the problems you face daily. I know it feels futile to try sometimes for some people, but what sort of perspective do you try and keep?
I think it’s all about being aware of and acknowledging your limitations as sad as it may seem at first yet finding something that you can engage in that is doable and isn’t strenuous. And when it comes to wanting to take a trip somewhere farther than a local place, you should weigh out whether you feel that you can actually do it.
And if you can, prepare yourself mentally in advance (it really does work sometimes!). Also make sure that you take everything that you may need to make the trip gentle or in case you flare up. Also, if you are having a good day, be spontaneous and go somewhere or do something on that day! That’s what I do sometimes if I feel I can handle it. Don’t beat yourself up if you were doing something and having fun but then feel worse the next day. Just breathe, rest, energize. Love yourself. Be compassionate with yourself.
Lisa Marie Basile is a NYC-based poet, editor, and writer. She’s the founding editor-in-chief of Luna Luna Magazine, and her work has appeared in Hello Giggles, Bustle, The Establishment, The Gloss, xoJane, Good Housekeeping, Redbook, and The Huffington Post, among other sites. She is the author of Apocryphal, (Noctuary Press, Uni of Buffalo) and a few chapbooks. Her work as a poet and editor have been featured in Amy Poehler’s Smart Girls, The New York Daily News, Best American Poetry, and The Rumpus, among others.
Nadia Gerassimenko is a Freelancer in editorial services, and Assistant Editor at Luna Luna Magazine by day, a moonchild and poet by night. Nadia self-published her first poetry collection Moonchild Dreams (2015) and hopes to republish it traditionally. She's currently working on her second chapbook a chair, a monologue. Visit her at tepidautumn.net or tweet her at @tepidautumn.