The symptoms that one faces when having chronic illness can vary from fatigue to pain. The irritability to brain-fog all mask to outsiders as an attitude that needs adjusting and the slipping of ones marbles. This tension causes rifts between spouses, children, extended family, friends and co-workers.These are four ways to dispel the perceptions about your chronic illness.
Communication is the first way to dispel perceptions about chronic illness
Once the chronic illness has been diagnosed then helping your loved ones understand what symptoms you are feeling and how the illness effects you is the first important way to help. When a loved one clearly understands the limitations of your illness then they are more likely to be sympathetic to them as they occur. It also gives the loved ones the opportunity to step up to the plate in helping you with task and needs.
My journey with Fibromyalgia is documented here. I share ways that I try to journey through life with my chronic illness. This is a roller coaster ride to a life with chronic fatigue and pain, but dispelling the perceptions my people had about the disease helps them understand what I am actually going through on a daily basis.
The second way to dismiss the wrong viewpoint about your illness is to give loved ones a chance to educate themselves. A person with chronic illness is often busy educating themselves about their new found diagnosis. It would be helpful for the loved ones to see the information you are finding regarding your illness. Once a loved one understands for themselves then the perceptions can easily be dispelled. There are websites, books, and information that are easily accessible from your doctor that will help you teach your family about what is happening in your body. When you become a team for your healthcare then the journey becomes easier to navigate.
Thirdly a way to dispel perceptions about your chronic illness
is to engage your loved ones in helping you manage your schedule for minimizing those symptoms. If you have communicated and educated your loved ones then asking for their help in meeting the slower pace to help lessen said symptoms. It allows for you to clearly state when the schedule is overwhelming or the task too large. This sharing of the burden of a schedule or task on your hard days makes you able to be comfortable to be more engaged on the better days.
Lastly, the number four way to dispel perceptions about your chronic illness
is to clearly share the symptoms that are not your common though of ones. Some chronic pain patients are not able to work because of the pain, brain fog or fatigue. Many battle insomnia which makes working during the day difficult when you have not slept well at night. The inability to concentrate or pay attention is also a factor in holding a job or being in deep relationships. People find the forgetfulness and inability to hold attention a way that one is disengaging. Several chronic pain patients struggle with depression, anxiety and PTSD (post traumatic stress disorder). When ones does not feel themselves then it is hard to be around others. You begin to isolate and stay away from commitments.
Many of these symptoms bring about shame from the inability to live life normally. To help your loved ones and co-workers understand you better, you should share these struggles openly. Discuss the nontraditional symptoms with them so that they can see the hidden issues.
Christine Miserado, of “But You Don’t Look Sick”, describes this as the Spoon Theory. Here she tells of a life with chronic illness is like having a hand full of spoons and each task, relationship or event requires the use of a spoon. When you run out of spoons then one is left empty without the proper tools to move forward.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about
Christine Miserado, excerpt from The Spoon Theory
things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most
people take for granted.
The spoon theory is an excellent way to share with your family and friends the hidden parts of your chronic illness.
It becomes a tool that helps them easily see what they can not see otherwise. There are many symptoms and signs that to the uneducated mind make a person with chronic illness seem lazy or unfriendly when in reality it is a part of how your body is fighting against you.
The four ways to dispel perceptions are simple and easy to helping your loved ones understand your chronic illness. Start with clear communication then begin to educate so that your loved ones can help maintain a manageable schedule and lastly you teach them the Spoon Theory. These four ways of helping your loved ones know what is really going on with you and chronic illness begin a better relationship for life. There are more ways to dispel perceptions, but these ways are a good place to begin changing the perceptions.