Monday, January 31, 2011

Lyme, Your Partner, and Starting a Family

*Above: The day before the big Lyme crash.

Not all obstacles of Lyme pregnancy are physical, but sometimes it's easy (or necessary) to put other important parts of our lives on the back burner because all we can focus on at the moment is fatigue and pain.

There's a stupid cliche I hear once in a while... something about love and our spirit and our relationships being like flowers that need water to grow. I can't remember it now (nor do I want to--it's cheesy), but let's just put it this way: In order to function as a happy, healthy family, ALL aspects of our lives need watering, not just our own physical needs.

I've received a few compliments lately about how wonderful my husband sounds. I'm so tempted to make a messy husband joke here, and trust me, I could, but I won't because these compliments are true and he deserves some credit. He is more than I could ever ask for when it comes to being understanding, supportive, and loyal during our long battle with this illness.

After reviewing my relationship and how we came to be a family, I got to thinking about what a tremendous decision it is for a couple to decide to have a baby when the mother of that baby is sick. Even without children involved, it's a constant struggle (though most won't express this publicly) to maintain happiness, balance, and normalcy in a relationship where Lyme is involved. I would say that this area of my life has needed as much water (if not more) than my physical/treatment area, and if there's one piece of advice I can give you before you try for babies, it's that you should make sure you and your partner are in love and ready to move on with a family because you want to and not solely because you feel like you're running out of time or you're trying to rekindle a dying flame that's been snuffed out by years of illness.

Regrettably, I was married once before to a man who didn't believe I was sick and often accused me of being a lying hypochondriac. He was terrible and downright cruel to me at times, and he's not even worth taking up anymore space writing about.

Mike, my real husband, was the best friend who helped me through the hard times that follow a divorce. He was charming, funny, kindhearted. He was the exact opposite of the evil ex-husband. We ended up quickly falling in love.

This was all before my diagnosis. I remember telling Mike after just a few months of dating that I truly believed something was wrong with me and that I feared it might be cancer. At that point I knew there was something terribly wrong, and no one was able to find anything concrete, so I figured there was a tumor or two growing in me somewhere that they hadn't located yet. Instead of running away or chastising me, he looked at me calmly and said, "Yes, for all we know you might have cancer. But I'll be right here with you no matter the outcome." That's when I really knew I had found my partner.

A few years and many hospital visits went by. I'd go through periods of having a normal life aside from constant fatigue, mixed with a few bad months. September of 2008 was when the big and final crash happened--I was not bouncing back from this without serious help and a diagnosis. This also marks the time when our relationship started to require some extra water.

At our highest, we shared loving moments you only read about in sappy Nicholas Sparks' books: I had just been diagnosed, I was lying on the couch herxing my brain out, eating some soup Mike had made for me, and both of my hands suddenly stopped working. They just froze turned into bent little lobster claws. The spoon fell to the floor, and I just sat there, horrified, dead silent, with tears streaming down my face.

Mike calmly got up, got another spoon, and simply said, "It's OK, just calm need to eat. This will make you feel better." Then he started feeding me. If no one has ever had to feed you before, let me tell you, it's all at once the most beautiful, humiliating, loving, vulnerable, heartbreaking thing ever, especially when you're young and afraid you might be dying. But I trusted him and he obviously loved me, and for a while our relationship was adequately watered.

At our lowest, he became the caretaker and I became the sick person. A year and a half in, it no longer seemed like a temporary situation, but a deep rut we had both fallen hard into. He'd come home from work to a knotty haired, unsexy, sweatpants wearing invalid. I forgot how to do things for myself and relied on him heavily out of habit. I had lost my independence, even though I wasn't as sick as I used to be. (*Spoiler alert: If your illness takes over your life and becomes who you are, you will never ever heal). Mike started to make himself feel like he was obligated to fix everything, placing unrealistic expectations on himself and then resenting the relationship when things didn't get better. He felt responsible for me, like a guardian, and grew tired of the routine where we talked about my symptoms ALL the time, even when he initiated. We were feeding off of the ugly roles we had created for each other. Our relationship was in a drought and in desperate need of water, and a few times things got so dry we thought we wouldn't make it.

Obvious statement of the year: Lyme Disease affects everyone you love. The problem we get ourselves into is that the person infected starts to feel guilty for holding the partner back or being too much of a burden, whether it's mentally or financially or whatever else you can dream up while psychologically punishing yourself as you lie insomnia-ridden in bed.

Let's be honest though-- Lyme Disease is a burden. The key words here are Lyme Disease--not you. The person is not the burden; The disease is the burden. We couldn't fully move on until we internalized this. It has the potential to ruin a couple, but it doesn't have to if you can separate yourselves from it. The financial issues, the days spent in bed, the endless physical ups and downs, are a result of bacteria, an illness a Lymie has no control over. Putting blame on yourself or another person is counterproductive to healing and loving.

Anyway, back to the point. At our lowest, we gave it one more shot. We communicated our anger, fear, resentment, sadness, frustration, all of it. And then we decided that our love for each other (as people, not the roles we sometimes play) was stronger than spirochetes, and soon were were ready to do whatever we could to live a normal life together. Sometimes that means I don't complain out of habit (trust me, your partner knows by now you feel like shit 24-7). Sometimes it means my husband has to work a long day and then take care of the baby because I need rest in order to be a good mom the following day. When you can work together and feel optimistic as a unit, you are ready for babymaking.

I strongly believe that if two people are in a solid, loving relationship that they are happy to be in (despite stupid disgusting Lyme Disease), there's no reason why they will struggle too hard as parents. Just know that it will take extra extra watering sometimes, and often a lot of added responsibility for the healthier partner. Please read the next post written by my husband. I swear, I didn't pay him to say nice things about our relationship. We've worked hard for all of this because it's worth it.


  1. What a beautiful, honest post! I recently read that 85% of marriages (if my Lyme brain is remembering correctly) with one spouse suffering from a chronic illness will end in divorce. It's so nice to hear about people who DO make it. You and your husband are an inspiration!

  2. That is so beautiful! I loved it. It is the world of a Lymie. It sucks, it can be so hard, but it can also be so beautiful when two people love each other so much they make it through the really hard times. My husband and I are hoping to be able to start trying to conceive soon. Thank you for this encouraging and honest post!

  3. Thanks for this post! My husband and I are in dyer need of watering right now!!!

  4. That is awesome. I just did a post about my husband/partners of chronically ill people too! How funny. What would we do without them!