Sunday, October 3, 2010

Letter to friends and family: Lyme disease

Has it really been over two weeks since my last post? Time just seems to melt, one day into the next into the next. Several of my symptoms have returned, and it was all I could do to hold it together for Kellen's birthday party. I'm now recovering from that day even though it's over a week later.

Last night I came across a post from Infectiously Optimistic with a letter to friends and family explaining her Lyme disease and the struggle she endures day after day (please read this if anyone you know suffers with chronic illness. It's really beneficial). I have been struggling lately with how to ask for help from those closest to me. As someone who finds care giving natural, I have a hard time with needing to directly ask for the support I need. I feel like I shouldn't have to explain how to care. But I'm learning that those expectations only breed resentment if I'm not clearer about my needs.

I'm borrowing some of the language from that post in crafting my own letter:

Dear Family and Friends:
I have late stage Lyme Disease.

"Late Stage Lyme Disease is a neurological disease, much like Multiple Sclerosis, Parkinsons, and ALS are. When a person is initially infected with the bacteria, the disease is not neurological in nature and is easily treated with a course of antibiotics, but if the infection goes unnoticed and is left untreated, the bacteria continues to replicate and spread throughout the body. The systemic bacteria is able to morph itself into a resistant form that can hide itself in places in the body that the immune system cannot easily penetrate, like the joints, eyes, and the brain. The patient then becomes a Late Stage Lyme Disease patient.

"I know that this information is controversial, and if you do a google search on it, you are likely to come up with conflicting information. The disease itself devastates a Lyme patient's life, but the controversy surrounding the disease makes it that much harder. Understandably, it breeds doubt amongst other doctors, friends, and family members of a patient. I like to explain it this way though:

"The way Lyme Disease is currently being handled is much like the way AIDS was handled when the AIDS epidemic first arose. Patients who were infected with HIV were doubted, because the infection was so rare, understudied, and controversial. The patients were denied treatment and made to feel as though they were crazy, and that it was all in their head, despite their obvious illness and failing bodies. One of the leading Lyme doctors on the East Coast was actually initially an HIV doctor, and diagnosed one of the first cases of AIDS in North Carolina. He stuck loyal to his HIV patients despite the controversy surrounding the disease. He now primarily treats Late Stage Lyme Patients. It is reported that unfortunately, Lyme Disease is shaping up to look like an even greater epidemic than AIDS. This doctor asserts though, that compared to the research that was being done on HIV in the beginning of the AIDS epidemic, Lyme Disease research right now is alarmingly elementary and rather non-existent.

"I'm sure that controversy exists in the early stages of any new disease or epidemic, because typically the initial reaction to something that we don't understand is to either fear it and avoid it, or ridicule it. Unfortunately though, as this happens, lives are coming to a screeching halt, much like mine has.

"When Lyme Disease moves from it's early stages to its late stages, the symptom list grows exponentially. Initially, a patient may have 2, 3, maybe 4 symptoms that are easily ignored. By the late stage of the disease, the official symptom list expands to over 57 symptoms. This may seem nearly impossible and like an exaggeration, but think of it this way: the brain is the control center for the entire body. If there's an issue in the brain, then virtually anything in the body can go wrong, because the brain is the commander of every organ, cell and function in the body.

I do not know when I was bitten by a tick, whether it was the bite in Virginia when I was ten or whether it was a bite when I was pregnant. I've struggled with bizarre medical issues since I was young and have had bouts of extreme fatigue that were inexplicable. But those episodes seemed to be controllable.

After having Kellen, my face went paralyzed, Bell's Palsy, seemingly benign. If I had known then that I had Lyme disease, I could have been treated with antibiotics and hopefully gotten better quickly. Instead, I was prescribed steroids, which is actually devastating to a Lyme patient as it provides an environment ripe for bacteria replication. Because of the fire, my diagnosis was even further delayed because it was easy to assume my symptoms were a stress response or related to my PTSD. Each day from November 2008-September 2009 I continued to get sicker and sicker as the bacteria ravaged my body, most notably my nervous system with profound dizziness, light sensitivity, peripheral neuropathy, shooting electric shock pains down my arms, migrating joint pain, muscle pain, and fatigue merely from waking up. In that time, I probably had thirty healthy days.

Lyme patients are often written off as head cases, merely imagining their symptoms. Why anyone would imagine this hell is beyond my scope of comprehension, and if you knew how badly I felt on a day to day basis, you would never accuse me of hypochondriasis or pretending to be sick for attention. By questioning my diagnosis, you create even further isolation when chronic illness is isolating enough.

Despite the pain in my body, I have continued to try to live something resembling a life. I know to some of you it seems that I am wallowing in self-pity, eager to share my pains with anyone who will listen. You don't see the strength it takes for me to get out of bed and take care of my son. There are days where my only goal is to be able to cook dinner. I endure great pain to live half the life that I imagined I would live at 28. When Kellen goes to the Little Gym, I experience increased dizziness because I'm so sensitive to light and noise. But it's important to me that he not sacrifice because of my illness. We have people over for football games because we enjoy it, and yet the energy I expend cleaning my house and cooking takes me several days to recover from, nevermind the dizziness that comes along with the noise. I can no longer do so many of the things I love (like reading and scrapbooking), so any activity feels like I've crossed the finish line of a marathon.

I know there are many of you who feel that we are neglecting you. My entire day is focused on surviving to the next day, and I'm sorry if I have hurt you or otherwise not been engaged in your life. It is not because I do not care (and I need to remember that just because I haven't from you that it is not because you do not care). As the other blogger noted: "A lot of the time though, when you're chronically sick, you're "out of sight, out of mind" because the nature of normal everyday life tends to swallow up those around you." And because of my illness, I am no longer engaged in normal everyday life with you.

There are also family members who don't understand why we don't make the effort to come over (more). They don't realize that there are days where simply getting out of bed requires incredible effort. I have to give myself an IV infusion everyday for two hours. I have to take my medicine out of the fridge one to two hours before my meds start. While you might not mind my infusing at your house, it feels like a hassle to bring my supplies with me, not to mention the inevitable reality that I will need to drive home connected to my IV. Additionally, if we are at your house, I have to spend more time corralling my son and making sure he doesn't break something or hurt himself. Ultimately it's just so much additional effort for me to go anywhere that we just stay home. On my good days (and hopefully weeks), I'm trying to make up for two years worth of projects. The reality is that I still have yet to fully move in to our house because I've been sick for so long. As I've said many times, we are more than happy to have you over as long as you don't mind the clutter that seems to overtake my house.

The doctor of that blogger said that this disease takes a village to overcome, both in terms of medical professionals and support. She says, "I also believe that at the end of the day, if the patient doesn't have their own village of supportive, accepting, educated family and friends to come home to, the puzzle is incomplete. You just can't do this alone." I know that I cannot beat this alone, both mentally and physically. I know that learning to ask for help is only one small part of my long journey in this life, and I am continually reminded that I need to seek out the support I need. I need you as a part of my village if I am going to come out of this on the other side.

Things you can do to support me:

- Educate yourself about Lyme disease. This is a very controversial disease, but I trust my doctor. No one would question me if the doctor said I had cancer. Please don't question this either. The doctors and patients are, in a way, unlucky to be at the forefront of this disease (possibly a major epidemic) because there is just so much that is unknown and treatment often feels like an arrow flying through the air in a dark room just hoping to land on the target... and if you're especially lucky the bullseye. The documentary Under Our Skin is a great start as is the book Cure Unknown.

- Don't assume that because I've had good weeks that this week is a good one. The worst weeks I've had have followed some of the best weeks because it's so mentally draining to have a bad day after so many good ones.

- Reach out. Chronic illness is, as I said, very isolating. The loneliness only enhances the depression that comes along with this disease. While I may not have the energy to go out to lunch or even get coffee, I need friends, whether you call or come over and hang out for a bit.

- Leave out the puppies and rainbows stuff. Positive thinking is great, but my sharing with you how badly I feel isn't negative thinking. It's just my sharing my struggle with you because I am trying so hard to get you to understand the pain I'm living with so that you don't think my laying on the couch is laziness or made up. I don't need you to tell me to think happy thoughts. If you do, I promise to annoy the heck out of you one day with the same rainbow up the ass crap, and I don't think you'll like it!

- Dinners. Evenings are especially hard for me, so having some frozen meals would be helpful.

- Other household help. Simply doing laundry takes an enormous amount of energy, much less weeding as my meds cause sun sensitivity. Any help is always appreciated.

- Patience. I do believe that I will get through this and get to experience health again. In the meantime, please be patient. If I'm short with you, I don't mean to be. I just don't feel well. If I cancel plans, please know it's not personal. If I don't call for months, I promise I still care.

This journey is hard. But I know I can't do it alone. I need you.

Be well.


  1. I know that we haven't been the best of friends in the past, but I've honestly like to help you. I guess I never realized how bad it has been for you, Joey as well. Since Joey and Dan haven't been as close lately. I would really like to get together. Our kids could play while Joey and Dan catch up, and we could talk. Just let me know if this is something you are up to.

  2. Heather- we'd be more than happy to have you over. Dan's in school everyday until mid-afternoon.

  3. I'll be honest, this letter was eye opening for me. I know things have been bad for you, but even still I didn't know, really, what day to day is like--or what the diagnosis actually means (or the controversy). I never doubted anything about your struggles, but this makes it all so crystal clear. And it sucks that you have to go through this.

    I wish there was something I could do from afar, so if you think of anything that blog friends could do--I'm here.

  4. This could apply to so many with invisible disabilities.
    Healthy people take their health for granted, and cannot begin to understand the effort just living requires.
    Here's to tomorrow being a little bit better.