I have a chronic illness.
In March of 2015, I finally received a diagnosis for an illness I’ve had most of my life. Living with Chronic Neurological Lyme is sometimes challenging at best. My husband is an amazing man, and while he is not perfect he’s done an amazing job of supporting me through this process.
I recognize and respect the powerlessness that many people, who love or care about someone that is struggling with health issues.
If you have a friend or a loved one who is struggling with pain or health issues you are in a difficult position.
The job that you have is not simple or easy. I have met many people who say, “I just don’t know what to do to help him/her.” I frequently tell my husband that I’m sure it must be hard on him to watch me be in so much pain.
Your job is not easy and there’s no handbook for how to help us.
My aim is to provide you with a framework to empower you in supporting those you care about who are struggling.
Communicate about everything: Whether it’s about how each of you are feeling or about what you need, communication is essential. I cannot emphasize this enough, communication is essential to surviving these stressors. Sometimes it can become easy to focus on trying to “fix” or “help” your loved one. Please remember that there is a person underneath the presenting issues.
Reality check: No one ever died from not doing dishes (no matter how much this might be a personal issue for me). How important is it that the laundry gets done right now? This one goes back to communication, but it’s essential for both parties. In my perfect world, my house is immaculate with nothing out of place. However I am not currently living in a perfect world.
Measure your expectations: The person struggling with the illness or pain is, many times, not capable of carrying their “share” of the relationship. Therefore, it’s essential to use a different kind of measuring stick. Prior to my recent health decline I did the majority of the cooking and cleaning. Currently, my wonderful husband does 90% of it. I help out when I can but we have agreed it is not worth the ramifications.
Focus on other things: My husband and I spend little time talking about my health these days. In the beginning there were a few occasions where we laid in bed and I cried while talking to him about my fears for our future.
In my experience—focusing on the illness just makes people sicker.
We do “check–ins” and these are typically based around my current pain. He will say “how are you feeling” and I will explain what specifically hurts in that given moment. Unless we are talking to a medical professional we rarely identify the illnesses that I have been diagnosed with.
Make your priorities authentic: On any given day, my priority is to make it through the work day and home with enough energy left over. My husband’s priorities are for me to become healthier and happier. Occasionally I loose sight of my priorities and make them arbitrary things such as: being active, having an immaculate house, being a desired weight. I can’t stress this enough, spend some time finding your personal priorities as well as the priorities that are right for your relationship.
Notice the good things in your partner: This concept can help every relationship. We have become a society that is so focused on what isn’t going well that we neglect what is going great. I would encourage you to not only notice but acknowledge when your partner has a good day, hour, week or moment.
Make future plans: Living with a chronic health condition can feel like a death sentence. It’s essential to have plans that are outside of health related stuff. I like to plan at least a weekend getaway every few months. It gives my brain something positive to focus on specifically when things are rough.
See the potential: I can’t tell you how many people I have talked to who feel like they are defined by their illness. Personally, I am unstoppable with or without any diagnosis. That doesn’t mean I can necessarily hike through the woods. But I have become skilled at finding ways around doing what I want to do. My husband is a genius in this area. We have made many accommodations to what we enjoy doing.
Practice Gratitude: From a variety of perspectives, gratitude is a healing power. Be grateful for literally everything. Examples of things I express gratitude for in my own life include: my willingness to go through all of these things, that I am loved, that I am resilient, that I have an amazing partner. This is really an endless list.
Do not pity your partner: I’m sure most people recognize the futility of being pitied. It’s not helpful and only leads to a decline of the positive feelings surrounding the relationship.
Talk to others: Prior to receiving my diagnosis I was (and still am) a private person. In the spirit of loving my husband, I have become okay with him telling others what’s going on with me. Even though the caretaker is not the person suffering or struggling directly with whatever’s going on, they are still valued. I have said countless times, that I can’t image the powerlessness my husband experiences.
Author: Jenn Bovee
Editor: Ashleigh Hitchcock