The pain that doesn't go away
- Joellen Monson
We all experience acute sicknesses so can relate to the short term, even intense discomfort of a cold or flu. What helps sustain us in our misery is that we know that we just have to grin and bear it, soon we'll get over it - we get better. Life goes on as before. For most people getting sick just works this way; you get something, you get better. Pretty simple and basic aspects of going through life.
Not so with chronic health issues. The differences between an acute and chronic illness are like night and day. A chronic illness lasts and lasts. It's end point is unknown. It could last months, years, forever. People of all ages who experience chronic pain, illness or disease have to deal with the sometimes radical changes in how they must now go through their daily lives. Things that we all take for granted but that the illness now prevents, or if your lucky only inhibits, your ability to do things that were once so simple and basic. For some people it can mean they no longer can experience the sticky yummy taste of a peanut butter and jam sandwich (severe nut allergies) or the pleasure of breathing in the scent of freshly mowed grass (severe asthma), or taking a stroll down the street (juvenile arthritis), or going to work (mental health issues). Chronic illnesses don't just strike the elderly. They can attack at any age and there aren't any sign posts to point to who may develop them and who will be spared. Or the way to deal with them.
But people are adaptable. So they learn to live with these new limitations. The families just learn to press the doctors and specialists for the correct care for their condition. They learn what they are now able to do and what they can no longer partake. They deal with the grief of their loss of abilities.
But there is one more huge limitation that they must contend with that is not so easy to overcome. In addition to the actual illness the chronically ill (and their families) must contend with other people's reactions to them. Or their lack of reaction in many cases. Given that most people are familiar with the acute illness process of getting better, people generally assume that the chronic illness will also get better. They can forget to check in and ask how things are going. When they find out that the person is not getting better most people seem somewhat at a loss as to how to respond so they don't.
Anyone who has lost a beloved family member may have experienced the common situation where someone avoids talking about the death. They don't seem to know what to say or fear that bringing up the subject will hurt the bereft family member. Once the initial event has passed other people naturally just go on with their lives. Research has shown that grieving a loved one can take a minimum of seven years to come to terms - for others it can take the rest of their own lives.
With death, sadly, there is an ending. However, with chronic illness issues there may be no end in sight. Yet these families also experience the same awkwardness from friends. Listening to the many people consulted for this article, this has become a common response to their ongoing, daily struggle. Friends, co-workers even family members seem to pretend that the continuing sickness isn't really even still happening. They don't ask so they don't risk offending. They think they're being helpful when, in reality, they are actually be creating distance.
This can be very isolating for the people struggling to help their family member cope while experiencing their own stress and realizing that they're not receiving much needed support from others who are supposed to be close to them. They notice that people don't mention the illness so they often feel that they don't want to burden others with unasked for updates. They figure that surely the others know that they're still dealing with issues and that if the others don't ask they may not care or want to know. Or they may feel that a continued lack of "good news", progress or resolution to report may make the listener feel down so they in turn don't want to continually burden their friends and family. This leads to a circular pattern of non-communication.
So, first to those of you who do reach out and stay in some form of regular contact with someone whose family contends with relentless health issues. Bravo! A big thank you goes out to you for your kindness, awareness and sensitivity. Your friends are very lucky and you are very brave to keep in the loop even though it can be hard news to hear. These connections can make the difference in helping sustain someone who gives all their energy out to their family member and is able to be given supportive energy from someone else who cares.
If, on the other hand, you recognize yourself in the description of the person who's not sure what to say or if they should say anything then here's what you may try; "I just wanted you to know I was thinking about you and wondering how things are really going." or "I'm here if you would like to talk. I really care about you and want to know how you are." (and then be there over and over again). It's about trust. Can this grieving person trust that you can handle this information? Can they risk the burden of sharing just a portion of what they're experiencing?
It's an amazing gift to give any family that you may know who struggles with the life changing burden of chronic illness. You can't fix it, and neither can they, but you can let them know that they are not alone. And sometimes that can make all the difference in the world.