By: Kerry Heckman
What does it mean to be defensive? It means to protect yourself from attack or criticism by staunchly justifying your actions, sometimes preemptively.
When you understand the definition it makes perfect sense that people with Lyme are defensive. We constantly have to defend ourselves against the CDC, the IDSA, doctors, insurance companies, and other naysayers.
Lyme patients are 100% justified in being defensive.
Personally, since my diagnosis my defensiveness has skyrocketed. Look at me sideways when I say I’m on a gluten-free diet and you will get an earful about the relapses of stabbing pain and unbearable nausea I get when I cheat.
Maybe you’ve had similar experiences. I often hear from others in the Lyme community about screaming matches with doctors in emergency rooms or friendships ending over missed attendance to an event.
Recently, I’ve been thinking it doesn’t have to be this way. I’m not my best self when I’m always on the defense.
There are some things we need to continue to vehemently defend. We need to continue our fight to be recognized, for more funding, and for better testing, research, and treatment. Our cause is more important now than ever. However, there are some things you may want to let go in order to be a more carefree person.
5 Things to Let Go
1. The idea that people without Lyme will ever fully understand what it is like
There are a lot of people in my life who are empathic and understanding of my illness, but unless they have Lyme, they will never truly know what it is like.
And it’s not their fault…
I don’t know what it’s like to have an illness I’ve have never had. I’ve never had Crohn’s disease and I imagine I might not be sensitive to all the nuances that occur with that particular illness. Having a chronic illness myself, helps me to be more empathic to others who suffer, but I still will never know what it is like to walk a mile in someone else’s shoes.
The only people who will understand are other Lyme patients, so if you are feeling lonely or misunderstood, seek out someone who can relate.
2. Unhealthy relationships
It is reasonable to assume people will not always understand what you are going through, but that does not mean you should stay in a relationship that completely lacks understanding and compassion.
People often say when you develop a chronic illness you learn who your true friends are. You may even see the true colors of a spouse you thought was your forever partner. This might look like blaming you for not doing washing the dishes, or not showing up to a party when you were bedridden, or saying you are faking your symptoms to get attention.
Sometimes you have to let people go. It is a very difficult thing to do, but you need all the support you can get to beat this thing. Negativity and blame are not going to help you get any better.
Note: I’m not talking about the “avoiders.” I think some people just don’t know what to say, so they avoid the conversation. I’ve been an avoider in the past, so I understand where these people are coming from. The way to deal with an avoider is to reach out to them. They really want to be there for you, they just don’t know how to do it.
3. Doctors who don’t listen
There are thousands of doctors. I know sometimes it feels like you’ve seen them all and the last thing you want to do is start over with another doctor, but you shouldn’t have to defend yourself to a medical professional.
The first functional medicine doctor I saw was kind and attentive. She gave me a hug when I came to her office, but after awhile I realized she wasn’t listening to me. I desperately needed a diagnosis and I was paying her out of pocket to find that for me. She was more concerned with fixing my diet and building my immune strength with supplements. There is no doubt in my mind she was helping me, but when the answer wasn’t easy to find, she stopped looking. When I finally made the decision to move on, the very next doctor sent me for a Lyme disease test.
Yes, it is exhausting and yes, it is expensive, but when you finally find the right team of doctors you will be so glad you looked for excellence, instead of settling for acceptable.
4. Arguing with strangers on the internet
As stated before, we must stand up for our cause, but it is a waste of your precious time and energy to argue with ignorant strangers.
There are so many opinions on the internet. There are people who make it their job to get people riled up in the comment sections of web pages. Unless they are a congressperson or head of the CDC, their misguided opinion doesn’t matter.
When it comes to close family and friends it is important to be heard, but when it comes to people you don’t know, sometimes you have to ignore the bully to make them go away.
5. The idea that you will always meet others’ expectations
I consistently don’t meet the expectations I have of myself, let alone others’ expectations of me.
We would all rather go to a fancy dinner with friends, a baseball game, the waterpark, or whatever else we’re too sick to attend. We would rather not have this disease, but that is not a choice we get to make.
You can’t go through life never making plans, but when you have Lyme disease sometimes you have to back out of those plans at the last minute. People may be disappointed or hurt, but that’s reality. Sometimes your disease will get in the way. It’s like the weather, you can’t control it, so it is better not to get upset about it.
A simple, “I’m having a bad flare,” should suffice for anyone who is a compassionate person. If not, see #2.
There is no doubt about it, Lyme disease will make you defensive. Just remember, you don’t have to defend your illness or treatment to anyone. Ultimately, they will either get it or they won’t.
Let it go. A happier, healthier you awaits.