Grieve your losses from Lyme, and then persevere
By Thaiadora Katsos Dorow
As a young adult, I was enthusiastic, ambitious, active, healthy, joyful. I was in great physical shape, I had a busy social calendar, and I enjoyed every moment of every day.
In the summers, I climbed the highest dunes to the beach, ran through the woods, and reveled in the sounds of frogs in the pond at dusk. Perhaps that was when I was infected by a tick. I never had a bull’s-eye rash.
Doctors say that tick-borne diseases can lie dormant in your body until times of great stress. This stress can be loss, life changes, or physical trauma. In my thirties, I worked as a school principal while also teaching graduate courses at a university. My days were full of passion, intellectual stimulation, vitality, and vigor. Lyme crept up on me, slowly deteriorating my brain and then my body. Then it hit me full on like a train wreck, after the birth of my child. Suddenly, I lost the ability to be me.
Everyone who has a tick-borne disease is different, because of the infections passed into the bloodstream, the person’s own immune reaction, and length of illness. By the time I realized that I had lost my brain, my career was gone, too.
Then, after dealing for months with the emotional struggle of what was happening to my brain, I lost my body. I woke up one morning, feeling suddenly and intensely terrible. At the clinic, I was variously told that I was having a heart attack, stroke, heart block, sarcoidosis, or lung cancer. I tested negative for Lyme disease. I now know that testing for Lyme disease is highly unreliable. A negative test does not mean you don’t have it.
When I started medication, my symptoms became much worse. This is called the Herxheimer reaction. Those Lyme bugs intended to live, and the war had begun.
When you have Lyme disease, you must fight an aggressive battle to become well. You can go through phases of relief and renewed health, and phases of debilitating regression.
During eight years of fighting Lyme, my symptoms have changed in intensity and in number. I have suffered early dementia, numbness in my hands, stabbing pains in my head, migrating joint pain, muscle pain, screeching or sudden complete deafness in my ears, uncontrollable twitches and tics, insomnia, magnified migraines, constant nausea, and intense fatigue, to name a few.
Lyme disease can mimic many other conditions, and can also exacerbate or even cause other diseases, depending on your immune response. You may carry the torches of fibromyalgia, MS, anxiety, chronic fatigue, depression, ALS, Parkinson’s.
You are lost in a whirlwind cycle as you attempt to find out how to get well, and even just how to survive. A lot of us have lost our marriages, our homes, our friends, and more, to the financial and emotional devastation caused by this disease. No one else really understands what we’re going through. You don’t get it ‘til you get it, as the saying goes.
Only recently have I been able to actually grieve the losses I have suffered. The intensity of the loss of my former life sometimes feels really hard to bear. I had to leave it behind without saying goodbye, instead looking at myself like a research project. Eventually, I had to face the fact that the life I used to have was simply not coming back.
You can accept your fate and persevere. You learn that in order to get well, you have to heal mind, body and spirit. You start to realize the balance. The only way to survive is to count your blessings. Celebrate your new life and all that it brings to you.
You need to find joy in every small thing you do. My children may not know a healthy Mommy, but they have learned compassion. They have learned to count their blessings and cherish moments of life. They have learned to accept differences, to encourage others, to be kind and thankful.
And, there is a whole other story to be told, since my children contracted Lyme disease in utero. With Lyme disease, we will continue to fight to survive, because we have this life to live to its fullest. We can choose to live. I hope you will, too.
if you want to learn more about our lives with Lyme and other tick-borne infections, gain insights into these diseases, or find valuable resources, you can read my book titled “What’s the Big Deal About Lyme?” You can also follow my book’s page on Facebook.
Thaiadora Katsos Dorow lives in New Hampshire.
Thank you, Thaiadora. Beautifully expressed. May your life be blessed.
Please tell me what doctor to follow up with I have chronic Lyme and also tested positive for Babesia , long story had breast cancer , other things happened, many doctors , pain management dr found it , I thought I was dying , I think I have a flare up but don’t know who to see .I am a mess don’t work collect SSD and state pension , saw an infectious disease dr , was ok at the time anyway she was a quack , I have IBS , chronic UTI , etc, no quality , I look good so I am supposed to feel good , what a joke , I wish people would get educated , that’s for another day , please tell me what kind of Dr. to see , thank you ❤️??I lived the Pocono’s PA
Since you are in PA, suggest you contact the following Lyme advocacy groups in your state:
http://www.lymepa.org/
http://palyme.org/
I can really identify with this. I too, was an active child in New Jersey, who spent all of my time in the woods, catching frogs and turtles, riding horses and playing with the dogs. I swam for hours on end and it was rare indeed to find me in my home just sitting around. This went through to my 20s moved to Virginia. I was camping, fishing, and hiking and lived on 7 acres with a pond and woodland, 12 cats, 4 dogs, a goat, 30 chickens and 2 horses. I worked full time and went to school. I love to learn and education is important to me. I started getting sick, and sicker, and sicker. Missing more work I could no longer do the demanding physical jobs I loved and had to quit working at the stables. I taught myself to type and started working as a secretary. I was diagnosed with “cat scratch fever”, which I’ve just recently learned is a co-infection of Lyme. I took 1 week of antibiotics. I got tinnitus, aching, b-12 deficiency, could not longer tolerate drinking alcohol, my toes went numb, and now its so bad that I’m unable to work and on a serious cocktail of pain killers. I’m in the UK now and every time I mention my concern about Lyme they completely blank me. I have come to terms that it will never be looked into here, and I just tell myself that I have had it for so long, it wouldn’t make any difference even if they did treat it. :-/ But its hard getting to the point that I just resolve to enjoy what I am capable of doing and let go of the “what ifs”
I don’t think you should assume that treatment now won’t help. There are plenty of cases of people who went a long time before diagnosis and treatment, yet ultimately were helped. Recommend you start educating yourself about Lyme and it’s co-infections. Dr. Horowitz’s book “How Can I Get Better?” is a good place to start, along with information on the LymeDisease.org website. Since you are in the UK, suggest you get in touch with the following organizations that are based there:
http://www.lymediseaseaction.org.uk/
https://lymediseaseuk.com/
Thank you for your response. I must admit, at the moment I simply can’t face another doctor staring at me like I’m a hysterical woman. From 16 when I had such debilitating cramping that I could not WALK and the doctor said “Take a paracetamol, you have a low pain threshold and how all women deal with this and I need to toughen up” so every month I laid writhing on the bed for a few days, (fast forward 10 years later to me lying on a table at a fertility clinic being told my tubes are completely blocked with scarring and I won’t be able to have children). Then all the appointments crying in pain and being called a drug seeker, obese, just lose weight you will feel better! (I was VERY fit before illness (& infertility treatments that messed up my hormones!!). The “You’re just depressed” lectures…
I’m tired. I’m angry. I can’t even broach the subject without flooding with tears (which then makes them question my state of mind). Sigh.
I am considering going to a Lyme doctor in New Jersey when I next visit family. I’ll ratchet that plan up a little on the trip agenda. I think its very common in Monmouth County, where I grew up, so at least they won’t look at me like I’m speaking alien tongues. Thanks for the push to keep going. x
The last test I ran (before completely retiring from being a medical lab tech) was my own Lymes screen which was IgG positive, Igm negative which means I had it a long time and was not currently active. Only one rheumatologist (out of 3) had any idea how to help me. An infectious disease doc told me I was just depressed. Well yeah, but that’s only one symptom. The chronic fatigue, mental fog & joint pain is back with a vengeance 2 years after the first regimen. I’m seeing the “good” doctor this week (she doesn’t accept insurance & you must work on reimbursement on your own) & hopefully she can get some energy back into my life!
Very encouragingly spoken, thank you.
Well written article. Glad you found a new livelihood in writing as well as helping other patients like yourself !
I can totally relate and my story is so similar. I continue to see all kind of drs tho still dont have someone helping enough. And I really dont even know what to do. I think i have had lyme for over 40 yrs . I have been “treated ” for it for over 10 yrs. I am fairly confident the 4 yrs of antibiotics made me worse. I have seen functional and integrative drs. I dont know. I read about some clinics and wonder if they can help but they all are soo expensive and i have already spent over 300thousand $ to be nowhere..I just wish i could get to the good place mentally that you are.
I absolutely relate to the “Lyme” story. Mine was extremely similar as far as what my life was like before and how the sickness slowly presented itself. However, when we get to the part about healing, everything is different. I live in Washington state – 3 hours from Seattle. No doctors here treat Lyme. I spent all of my money going to Seattle and getting various treatments (that was years after getting the severe symptoms and losing everything). I don’t have any more money to spend on healing. I have disability – that is not even enough to eat organically – even if I did have the energy to make food for myself. I don’t have much hope I will heal. And as for grieving and moving on – how do you grieve and move on when you are STILL experiencing loss – every single day is filled with loss – one more day of my life gone and I am lucky to have a healthy bowel movement. Lucky to survive the pain, lucky if I don’t spend all day in bed in agony. There is no grieving when life is like this and continuing. One grieves when the loss is over right? But the losses keep coming.
I would deeply appreciate it if, when people read what I wrote above, you can only be judgmental, please just don’t write any response to it, just keep it to yourself. How many times have we been told that we aren’t really sick, that it is just in our heads, that we must be getting something out of it if we aren’t getting better… this sounds a great deal to me like “I don’t think she is ready to listen and move on”. We all have different experiences with Lyme, we have different amounts of severity in symptoms, we have different amounts of financial resources, emotional resources, friends/family resources and on and on. And it makes a HUGE difference as to how quickly we heal, if we hear at all. Some of us don’t even have the opportunity to be treated effectively for Lyme, due to poverty and a plethora of other reason. Some of us have multiple illnesses and no family, friends to help us get through. No one knows what each of us is going through, so please don’t judge me, just because I am not in a place of healing, acceptance, and moving on. I was honesty and bravely expressing my situation, my experience, and it is very hurtful to have a person in the “lyme community” to be judgmental. I assure you, my situation has nothing to do with not “listening” or “being ready” to “move on”. That sounds so much like people telling me to smile more and everything will be fine. It is more reality based than that.
Dear dawnsdesigns3 – The person who commented “I don’t think she’s ready to listen and move on” was referring to her daughter, not to YOU!!! I hope this makes you feel a little better – you are not being judged.
Cathy, thank you so much for letting me know. I deeply appreciate it. please know how much your words and caring enough to take the time to let me know, means to me. I am afraid that I have been judged so many times, I am defensive, and have a very low self-esteem. I also just.. my beloved feline companion of 14 years suddenly died, completely unexpectedly, so I am in a place of so much grief/loss/shock/trauma, I have no idea how to cope. I would say I should be a hermit for a while but that is what I have been doing for over the past decade – except for my sweet cat. Who is now gone. Anyway, thank you so much for letting me know.
Understand completely – never would have believed this if we weren’t living it with my daughter – thank you so much for sharing. I don’t think she is ready to listen and move on, but your article gives me more strength to try.
Thank you for sharing.