After receiving devastating news regarding our health, some of our first thoughts become “How am I going to tell the people I love?” This alone is a very heavy weight, and there’s really no “right” way to tell those you love that everyone’s life is about to change.
It is human nature for those upon hearing awful news such as death, divorce or illness to feel uncomfortable and want to move past these feelings. The second feeling the many people feel is the immediate need to say something to try and fix the person’s feelings. While none of these are bad, these things can be harmful to the patient or person. The knee-jerk reaction to sooth the person in front of them is often more about the person’s own feelings of discomfort in sitting in bad news.
As a Lyme patient, I am sure you all have seen people deal with this in different ways- some with sadness and compassion, others with disbelief and denial.
But what about the person who is ill? Upon receiving medical news or even when opening up about past experiences, it is natural begin to feel the guilt and burden of your medical someone else’s discomfort. What I will hear from those struggling with not only Lyme, but any variety of illness or “bad news” is the need to keep it to themselves out of guilt and stress. “I don’t want to be a burden” or “ who wants to talk to me? I’m the most depressing person on the planet.” As a result, many people become not only isolated from their loved ones, but end up telling themselves through their inner voice they are not worth being listened to or cared about because of their illness.
As natural of a response as “It’ll all be okay in the end, you’ll get through it!”, it’s actually harmful for a few different reasons. Statements such as these do not acknowledge the feelings of the person experiencing the damaging event. The fears, the unknown, financial liability, anger, sadness- all of these emotions go unnoticed and feel pushed aside. It is so hard because most people who have yet to experience such a shift in their lives don’t understand that the here and now is the daily reality, and the reality is that things might actually not be okay for awhile. If I could ask society to change one major way in the way they respond to a sick person, it would be to change those well meaning positive blanket statements into a simple “And how are you doing with this?” By asking about how the person is feeling, they are in turn actually being helpful by acknowledging there’s emotions and nurturing the hurt part of the person instead of shutting down the discussion with a “nothing lasts forever” inspirational Pintrest quote.
Another phenomenon that seems to happen to those who are ill is the change in their relationships. Some may find while few have gotten stronger, others begin to dissipate. The social calendar begins dwindling and inquiries are met with a “ well, I figured you would be sick anyway, so I just didn’t invite you” or the “I didn’t want to bother you.”
All of these send a collective message to the person who is ill that they might no longer matter to the rest of the functioning world. What was once importance to those we held close is now an infrequent thought to them. So the ill person continues to isolate, no longer sees the point in reaching out. With isolation, pain and depression, anger is born and becomes a new friend.
While I can not promise you people are going to understand your experience and all of your relationships will withstand the test of chronic illness, what I can hope to do is urge you to continue to reach out. Through isolating and telling yourself you are an unmanageable burden leaves you with no one to help you with your emotional pain- everyone needs someone. I would encourage anyone in an isolating situation to try and find someone within their area to connect with- there’s online groups sectioned off by location, meet-ups and text for those who can not leave the house. You are not a burden and you do not deserve to be alone in your pain.
Alexis is an advocate for mental health wellness in the Lyme Disease community