Comments from Others

What I’m sharing today kept surfacing in my mind while reading an article about health and wellness as it relates to chronic illness. My apologies in advance for the length. Some of this I’ve addressed before and I received some good feedback. If you make it through to the end, I’d love to hear what you may have experienced personally. Here it goes: My partner is at a great disadvantage with Parkinson’s disease and the onset of dementia. New issues are piling up on top of the old ones. When your loved one is in the middle of such health challenges and you’re doing your absolute best to care for them, the last thing either of you need is more drama that causes tension. Fortunately, we have a good family support system in place and know we can always count on them to be supportive. With that said, our days and nights are still full of often unexpected and unwelcome stress from disease progression. As a caregiver, my focus has been and always will be on my partner. One ongoing issue I’ve briefly addressed in this group before has to do with “self-centered” people who like to think they’re helping, but don’t ever really listen with intent to understand and learn about the disease or the issues we wrestle with. I am often left wondering why I even bother trying to explain things in the first place. But I know navigating through the different reactions, personalities, perceptions and relationships with friends, family and even doctors is tough. This leads me to the next point about support.
Support comes in many forms. And while lack of contribution isn’t always intentional, it’s important to know what healthy support looks like. I’m finding that people’s perception of the health of others is largely influenced and measured by their own view of what it means to be healthy. More often than not, the quantity and quality of time spent with someone and what we think we know about the person’s health is all we have. A lunch date, or taking my loved one for a ride to get out of the house, or a 10 minute doctor checkup is nice, but the real insight comes from the rest of time spent at home. That’s why learning is important. Just like your view of your own health was influenced by your level of education, beliefs, family and more, your perception of the health of others is also affected by these same things. Furthermore, unlike our view of our own health, we tend to judge others more gently or superficially in some cases and more harshly at other times. Most of us perceive elite athletes, models etc as healthy based on their appearance alone. It’s easy to think about “wellness” in terms of physical looks and say things like, “Oh, he/she looked good to me.” Our society has worked very hard to tell us what being healthy means. But this is not always the truth and good intentions can often do more harm than good. So when a friend of my loved one says “all looks good to me”, I know it’s bullshit. And I’m left wondering about their true intentions.
As most of us already know from our own experiences, it can feel like a dagger through the heart to hear the words, “You don’t look sick.” or “Just try not to think about it, and you’ll feel better.” It can also be harmful for these same people to offer up any medical advice to someone with a neurological disease. More than likely it’s coming from a place of good intentions, but it can also come from a place of ignorance – intentional or not. Perceptions become shallow delusions when we don’t look at the whole person from a physical, emotional, social, spiritual, and intellectual level. If someone shows you they’re not interested in hearing facts or if they’re dismissive after you as a caregiver have included them in details about a loved ones illness, this may be a person you no longer want to or need to share information with. Toxic positivity from friends, family and medical professionals can be just as unhealthy as constantly looking at a chronic illness from a gloom and doom perspective.
Yes. Even medical professionals miss the mark here in my opinion. Maybe they should stick to complementing a patient’s outfit or shoes instead of saying, “Well, you look good”. But then again, it could be that they’ve never had the personal experience of the pain the illnesses they treat causes or the imagination and empathy to understand what’s going on with someone else. Or maybe they’ve had too many painful experiences themselves and don’t want to relive them. I’ve read that psychologists think that for some people this behavior comes from a need to deny that things can be really bad. If you share with someone about a loved one who is struggling with chronic illness, that person should really discipline themselves to listen carefully and not override the primary caregiver’s experience. Instead of just trying to be positive for the person who is ill, try to really listen to the every day helper who sees things you don’t. Try to understand what’s going on from a broader perspective. If your loved one is embarrassed by you over sharing at the doctor visits you attend, send the doctor a confidential email a few days prior to the appointment.
Many people may not feel a need to share feelings. It’s therapeutic for me. And sometimes I feel guilty for rambling on and on with my thoughts and words. But when someone is willing and trusts you enough to open up, the very best thing you can do is listen. I try to do the same for others. On the other hand, if the recipient of the share doesn’t seem to have a real willingness or a mental capacity to understand or listen with intent to learn, letting go of that relationship may be necessary. When someone shows you who they are, believe them. Accepting the reality of someone else’s disabilities and chronic illnesses are tough enough to navigate without all of the added drama. When someone dear to you who has held a place in your life for years falls into disease progression, it’s difficult when you can no longer recognize the person. At times, it may be best to gracefully end sharing too much when it does more harm than good. It may not be what you ever envisioned, but it can place the focus where it’s needed most – your health and what’s best for your loved one. You can still love that person from afar without over sharing.

Dennis Lane Green on Facebook.

Care giving can put one in a dark place but it seems God and faith helps one to find the next daylight.