"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God." 2 Corinthians 1:3-4
THE CALL FOR A VOICE
WHAT ARE INVISIBLE DISABILITIES?
Individuals who experience physical, cognitive, and emotional setbacks can experience what is called an "invisible disability" or "invisible illness." This is considered to be a debilitating condition in which there are no obvious outward indicators of an impairment. Conditions such as cancer, lupus, fibromyalgia, chronic fatigue syndrome, chronic pain, migraine headaches, vestibular disorders, chronic Lyme, MS, autism spectrum disorders, memory loss, mental health conditions, etc., can cause impairments that challenge daily living yet are not visibly apparent to outsiders.
LIVING WITH AN INVISIBLE DISABILITY
Today, countless people are suffering silently with physical, cognitive, and emotional impairments, attempting to navigate life the best they know how. Each individual experience is unique depending on the person's distinct personality and character, the nature of their impairing condition, as well as access to effective treatments. Invisible disabilities can affect a person's life at multiple levels- financially, physically, emotionally, and socially. Financial hardships add increased stress for individuals with chronic conditions. Some are forced to give up their careers/jobs or work at a less physically demanding position that is lower in pay. Lack of access to healthcare coverage or adequate insurance and decrease in income will lead to the inability to receive adequate services and healthcare to treat the condition. Some conditions such as, chronic Lyme, have recommended long-term treatment strategies that are not covered by health insurance and can cost several thousands of dollars to treat.
There are also social and emotional struggles involving chronic conditions. Weakness and pain as well as neurological difficulties can bring a person to the point where their greatest aspiration is just getting through the day. It is overwhelming to manage appointments, medications, specialized treatments/remedies, therapies, diet changes, and other doctor/practitioner recommendations. Emotional responses such as depression, anxiety, and mood swings are common in dealing with these frustrations. When an individual battles with an impairing condition, their social life may falter and they can easily isolate themselves. Some call the impairment their "secret identity" or their "double life."
Chronic conditions and invisible impairments bring out the strength and courage of these unlikely heroes. There are two kinds of courage in dealing with the physical and emotional struggles. There is incomprehensible strength in bravely pushing through the pain and bearing with it; however, I have witnessed a new dimension to courage when that person openly admits their need for help. For a long time, I felt ashamed of my own impairments, trying the best I could to hide it. For at least a year, I was able to hide my balance disorder and mobility impairment by using my son's stroller and other strategic approaches for mobility; however, I eventually needed to use devices to get around. Then, I had to work up the courage to get out of the house and use these devices in public. Sometimes I have noticed the stares and the discomfort of others when I am at church and other public places. Although I do struggle with the social awkwardness of these situations, I honestly don't spend too much time worrying about what others think. I need to focus my time and energy managing my day, keeping up with my treatments/supplements, taking care of my family, and finding creative ways to make life work for us despite my impairments.
BUT YOU DON'T LOOK SICK!
In my support network with individuals who have chronic conditions, the number one complaint I hear is when people tell them they look great or they do not appear sick. They often will perceive that the person does not believe them or is minimizing their pain. When people tell me how great I look, I try to take it as a compliment. I usually smile and say thank you, or I might add "I wish I felt as good as I looked."
Other individuals in my support network have shared frustrations in how to respond to rude and insensitive comments from individuals who do not seem to believe they have an impairment. For example, individuals with invisible impairments are often criticized and accused of being lazy or deceptive if they use a handicapped parking spot. They may ask a spouse or someone else go to the store for them in order to avoid the scorn and anger of uninformed members of the community. My dear friend was recently hurt by insensitive comments made from someone in a group discussion because she mentioned that she sometimes drives her son to school although they live nearby. Though the woman was aware that she had physical challenges, she was alluding to the mom's laziness in driving her son to school obviously unaware that her hip locks up if she walks too far and then she is unable to walk for days at a time.
Individuals with chronic conditions will also struggle with how to respond to questions about how they are feeling. They will often give a dishonest answer because they may question the person's sincerity, they may see their pain and impairment as a sign of weakness, or they may not want to talk about it. Just because someone is struggling with how to communicate about their impairment does not mean you shouldn't ask them questions or show that you care. It is refreshing for them to see your sincere demonstration of kindness and consideration. I bring up these issues, not because you should worry about what to say to someone with health impairments, but to offer insight into their lives. We are more equipped to show respect and compassion to others when we are aware of what is not visible to the eye.
WHY DON'T I GET BETTER?
When you come down with a cold or a virus, you may feel rotten for a few days or even a week. You may go to the doctor for a prescription or take something to ease your symptoms until the virus takes its course, and then you move on. When you struggle with a chronic condition, it is like being stuck in that place of feeling miserable for months and sometimes years at a time. Your doctor may not know what exactly is causing your symptoms. Your specific condition may not have a cure or effective treatment. Other people may not understand why you can't take a pill or something to get better because they are uninformed of the nature of your specific condition. This is very frustrating for individuals, their families, and the medical practitioners attempting to treat their symptoms.
Individuals with invisible conditions will sometimes choose to try diet and other lifestyle changes as well as alternative therapies to manage the disease, illness, or condition. There can be moderate to high success in using various treatment approaches and lifestyle changes, but this is not always the case. Although the disease may be more manageable with multiple therapies and dietary changes, sometimes the individual with an invisible illness or impairment may be facing the fact that they will not get better or fully heal from their condition.
COPING WITH IMPAIRMENTSToday, countless people are suffering silently with physical, cognitive, and emotional impairments, attempting to navigate life the best they know how. Each individual experience is unique depending on the person's distinct personality and character, the nature of their impairing condition, as well as access to effective treatments. Invisible disabilities can affect a person's life at multiple levels- financially, physically, emotionally, and socially. Financial hardships add increased stress for individuals with chronic conditions. Some are forced to give up their careers/jobs or work at a less physically demanding position that is lower in pay. Lack of access to healthcare coverage or adequate insurance and decrease in income will lead to the inability to receive adequate services and healthcare to treat the condition. Some conditions such as, chronic Lyme, have recommended long-term treatment strategies that are not covered by health insurance and can cost several thousands of dollars to treat.
There are also social and emotional struggles involving chronic conditions. Weakness and pain as well as neurological difficulties can bring a person to the point where their greatest aspiration is just getting through the day. It is overwhelming to manage appointments, medications, specialized treatments/remedies, therapies, diet changes, and other doctor/practitioner recommendations. Emotional responses such as depression, anxiety, and mood swings are common in dealing with these frustrations. When an individual battles with an impairing condition, their social life may falter and they can easily isolate themselves. Some call the impairment their "secret identity" or their "double life."
Chronic conditions and invisible impairments bring out the strength and courage of these unlikely heroes. There are two kinds of courage in dealing with the physical and emotional struggles. There is incomprehensible strength in bravely pushing through the pain and bearing with it; however, I have witnessed a new dimension to courage when that person openly admits their need for help. For a long time, I felt ashamed of my own impairments, trying the best I could to hide it. For at least a year, I was able to hide my balance disorder and mobility impairment by using my son's stroller and other strategic approaches for mobility; however, I eventually needed to use devices to get around. Then, I had to work up the courage to get out of the house and use these devices in public. Sometimes I have noticed the stares and the discomfort of others when I am at church and other public places. Although I do struggle with the social awkwardness of these situations, I honestly don't spend too much time worrying about what others think. I need to focus my time and energy managing my day, keeping up with my treatments/supplements, taking care of my family, and finding creative ways to make life work for us despite my impairments.
BUT YOU DON'T LOOK SICK!
In my support network with individuals who have chronic conditions, the number one complaint I hear is when people tell them they look great or they do not appear sick. They often will perceive that the person does not believe them or is minimizing their pain. When people tell me how great I look, I try to take it as a compliment. I usually smile and say thank you, or I might add "I wish I felt as good as I looked."
Other individuals in my support network have shared frustrations in how to respond to rude and insensitive comments from individuals who do not seem to believe they have an impairment. For example, individuals with invisible impairments are often criticized and accused of being lazy or deceptive if they use a handicapped parking spot. They may ask a spouse or someone else go to the store for them in order to avoid the scorn and anger of uninformed members of the community. My dear friend was recently hurt by insensitive comments made from someone in a group discussion because she mentioned that she sometimes drives her son to school although they live nearby. Though the woman was aware that she had physical challenges, she was alluding to the mom's laziness in driving her son to school obviously unaware that her hip locks up if she walks too far and then she is unable to walk for days at a time.
Individuals with chronic conditions will also struggle with how to respond to questions about how they are feeling. They will often give a dishonest answer because they may question the person's sincerity, they may see their pain and impairment as a sign of weakness, or they may not want to talk about it. Just because someone is struggling with how to communicate about their impairment does not mean you shouldn't ask them questions or show that you care. It is refreshing for them to see your sincere demonstration of kindness and consideration. I bring up these issues, not because you should worry about what to say to someone with health impairments, but to offer insight into their lives. We are more equipped to show respect and compassion to others when we are aware of what is not visible to the eye.
WHY DON'T I GET BETTER?
When you come down with a cold or a virus, you may feel rotten for a few days or even a week. You may go to the doctor for a prescription or take something to ease your symptoms until the virus takes its course, and then you move on. When you struggle with a chronic condition, it is like being stuck in that place of feeling miserable for months and sometimes years at a time. Your doctor may not know what exactly is causing your symptoms. Your specific condition may not have a cure or effective treatment. Other people may not understand why you can't take a pill or something to get better because they are uninformed of the nature of your specific condition. This is very frustrating for individuals, their families, and the medical practitioners attempting to treat their symptoms.
Individuals with invisible conditions will sometimes choose to try diet and other lifestyle changes as well as alternative therapies to manage the disease, illness, or condition. There can be moderate to high success in using various treatment approaches and lifestyle changes, but this is not always the case. Although the disease may be more manageable with multiple therapies and dietary changes, sometimes the individual with an invisible illness or impairment may be facing the fact that they will not get better or fully heal from their condition.
When you have a debilitating condition or impairment, it turns your life upside down. There is a grieving process that is similar to when someone dies and you lose a loved one. You see everyone else moving on with their lives, and you feel left in the dust, alone, and discouraged. You may find yourself stuck in a place where you aren't even sure if you can make it through the day. You may believe that you are a failure because you can't seem to move forward with your condition. These are all very normal feelings and a part of the process of grief and coping with your impairment.
I have found several strategies that have helped me to process through my grief and cope with my situation. My most important strategy is to try to not worry about the future so I can focus on each moment or day at a time. I find a personal relationship with God to be very important for me, using Bible study, devotions, and moment to moment prayers to help me get through each day. I also make it a point to forgive those who have hurt me, and I give unpleasant social interactions up to God. It seems the more I keep myself busy and the more time I spend with God, the less I fret or worry about my situation and what others think of me. Most importantly, I am intentional in having gratitude by making daily lists of what I am thankful for. I celebrate small victories like having the energy to clean or work out in the yard, being able to cook without feeling like I'm falling, and enjoying a family meal at the table without dizziness or nausea. I am thrilled when I can get to church, go to a movie with my husband, or take a family vacation. These are huge victories for us! When I have a crummy day, I have a good cry and talk it over with God. We all have hard days. It's OK to be angry, to cry, and to grieve. God understands more than anyone. He loves all of His children so much He was willing to be tortured and experience an excruciatingly painful death in order to empathize our struggles and provide us with the free gift of eternity. When we allow Him to carry our burdens, we will embrace the lightness of His grace and His mercies. These truths offer us a new kind of hope.
A CULTURE OF CARE
"Let us not grow weary of doing good, for in due season we will reap, if we do not give up. So then, as we have opportunity, let us do good to everyone, and especially to those who are in the household of faith." Galatians 6:9-10
I yearn to be well again so that I can more fully enjoy my family and be of service to others. Despite my personal challenges, I take the time to be thankful for these impairments because I am able to more fully understand the grief and pain of others who are walking similar paths. I find it rewarding to share their burdens and walk with them. I have opportunities to share pieces of my story and what God has shown me in my journey to help others take steps of faith and empowerment.
You may have never experienced going through a chronic condition or having an invisible illness/disability. It might be more challenging to have empathy for others in this situation. I realize that it can be very hard to understand unless you've been through it yourself or with a loved one, but there are ways you can help. Small things like making a phone call or sending a card in the mail to show them you care will make a difference. If you want to uplift someone who is struggling, take the time to pray with them over the phone or in person. You can also help out by offering to come over for a couple hours and clean/do their laundry, pick something up for them at the store, or take their kids out for an afternoon of fun. I hope and pray that more people will take time to learn about the pain and struggles of others so that they can have compassion and empathy for them. As a church, my prayer is for us to move away from the increasing disengaging and self-absorbed nature of our society and move towards showing love and compassion for each other. This is the example Christ set for us, and we all need a reminder once in a while. God knows our hearts and our intentions, and He will reward us for our efforts as we engage in a Culture of Care.
"The Spirit of the Lord God is upon me, because the Lord has anointed me to bring good news to the afflicted; He has sent me to bind up the brokenhearted, to proclaim the favorable year of the Lord, and the day of vengeance to our God; to comfort all who mourn, to grant those who mourn in Zion, giving them a garland instead of ashes, the oil of gladness instead of mourning, the mantle of praise instead of a spirit of fainting. So they will be called oaks of righteousness, the planting of the Lord, that He may be glorified." Isaiah 61:1-3
Resources
For more information about Invisible disabilities/illnesses, and how to help others, you can read these articles and blogs:
http://restministries.com/about/illness-faq/
http://themighty.com/2015/08/why-i-lived-a-double-life-while-dealing-with-my-chronic-illnesses/
http://jessicaframedup.com/secret-life-lyme-disease/
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html
