The best statement in the article is:
“The symptoms of the disease have been known to overwhelm those who have it.” Dan Pearce
If ever there was a statement to describe Lyme/MSIDS, that’s it.
Due to how it reaches tentacles into every facet of your life, overwhelming is an appropriate word. Also, the more pre-existing issues there are in a marriage, the harder it will be. Patients are forced to address past trauma, and any other psychological issues troubling them since this is a brain infection.
He also points out that parents AND children can all be infected. There are many families in Wisconsin struggling with just this reality.
A few points:
- The Black legged tick is not the sole perp: https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/
- The EM rash criteria is highly overstated with anywhere from 25-80% getting it: https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/ Please read comment after article.
- Because this can be sexually and congenitally transmitted, it’s not uncommon for blame to be cast around until patients come to acceptance. In some ways it can follow the same steps as the grieving process.
- Because of the polarization in the medical community, it can pit one spouse against the other due to the lack of agreement on everything from how it’s transmitted, tested, treated, and the severe and unbelievable symptoms it can cause. If you follow the 3 minute sound bite created by the CDC, your spouse will look crazy to you when they start talking about all the differences there are. This is one case where mainstream medicine is completely and hopelessly in the dark.
- The stress of this is unimaginable. Due to this same polarization, insurance will not cover long-term treatment that is now estimated to be 60% of us: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/ This financial pressure is palpable. The disease(s) can leave you in a fetal position in bed, completely incapable of working to defray out of pocket costs.
- Adding children to this picture complicates it exponentially. If the children are ALSO infected, the stress increases yet again. Children need parents and it’s a challenge parenting from a fetal position. Add in an overworked, stressed parent that’s becoming frustrated & feeling as if they are going it alone, and you’ve put gasoline on a fire. Blame and accusation can fly like the wind leaving everyone hurt and destroyed.
- Many have to travel considerable distance to even get proper care. This costs money, takes time, and is exhausting to sick people. The infected often lean heavily on the well, and if the well person isn’t careful, they can feel taken advantage of. To the outsider, the infected look lazy and to add insult to injury, ignorant and uneducated medical professionals state this – making it seem true to the uninfected spouse. After all, they ARE the professional!
- What many aren’t even factoring into this Steven King thriller is when BOTH spouses are infected. Now that’s a hum-dinger. Having walked that road, all I can say is it will test you like nothing else. Money flies out the door like a bird in Spring, you can both struggle with stress, irritability, memory loss, unimaginable pain, rage, and even nightmares and hallucinations. I can’t imagine what adding infected children into this picture would look like – but it happens and will continue to happen.
- Custody battles are ugly, but with Lyme/MSIDS, they take on an added horror. Again, due to the polarization in the medical community, one side (usually uninfected) feels substantiated by professionals from Yale, Harvard, and other Ivy League institutions which often cast a veil of quackery upon Lyme literate doctors. Even if the child is improving under the direction of a Lyme literate doctor, one spouse can blindly believe the opposite, and drag the other spouse (often infected) through a lengthy, costly, and emotionally draining custody battle over treatment.
- My husband isolated himself just as this article points out. He started hiding hard liquor that he used at night in a feeble attempt to sleep due to severe insomnia. This liquor was found and debate ensued. We argued a lot. Seeing all his symptoms and this new secrecy with liquor, I desperately wanted him to get to a doctor but it wasn’t until he fell down the steps he agreed. The old saying, “You can lead a horse to water but you can’t make him drink,” certainly held true for us. Sometimes things have to get really bad for people to get help.
- The article recommends getting support, but please be careful where you turn. Some mental health professionals have actually abused patients by telling them it’s all in their heads and handing out anti-depressants. Your local Lyme support group is a great place to start as you will be around others in the same boat. You can share resources and finally be real about what you are going through. They will often know of professionals who are trained and trustworthy, saving you considerable money and heart-ache.
- The issue of impatience for recovery is something the infected and uninfected struggle with alike. Unfortunately, this sucker has its own time-table and you are just along for the ride. Blame can be placed on the infected for not “doing enough,” or that somehow they are to blame for it happening in the first place. Trust me when I say, YOU ARE NOT TO BLAME. Refuse that weight on your shoulders.
- Lastly, I can’t even begin to express the power of affirmation. When I was my sickest, my son’s martial arts teacher saw us struggle and while I looked fine on the outside, he could sense the very real struggle we had. He told me, “Alicia, you have an indomitable spirit. This disease has nothing on you.” I feebly listened, but mulled that statement over for literally YEARS and while I didn’t feel it at the time, I repeated it to myself knowing I play a part in my healing. I grew into that statement and am so thankful he gave it to me when I was too weak to think it myself. Your words are more powerful than you know. “Death and life are in the power of the tongue, and those who love it will eat its fruits” (Proverbs 18:21). If possible, surround yourself with those who affirm you & avoid those who tear you down. We are extremely vulnerable in this journey and need support.