by Vicki Nunn (1 September 2016)
To the rest of the world, anyone with chronic illness, particularly when it’s invisible, can sometimes appear to be faking it. We often don’t look sick. We may not be in a wheelchair or use walking-sticks or other visible forms of support to enable us to get about. We may have all of our limbs. We may seem too young, or happy or we don’t complain.
While our scars and our pain may be hidden, our struggles are very real.
People with chronic illness have to deal with many everyday issues due to their conditions, from medications and tiredness, or pain and physical restrictions, high stress, inability to perform normal tasks, lack of energy and much more.
An added and unnecessary burden is the many able-bodied and healthy people around them who are dismissive of them and their very real needs, and the effect their illness has on their everyday activities.
For many with chronic illness, there are long-term physical, emotional, spiritual and psychological impacts of which the world is often not aware. To those with chronic illness, it sometimes seems is if people around them don’t care about their struggles.
What is Chronic Illness?
Generally a chronic illness is a condition that lasts a year or more. While in a small percentage of cases, chronic illness can sometimes be overcome or managed, for many people it is a condition they have to deal with for the remainder of their lives.
There are many conditions classed as a chronic illnesses and the effects vary from person to person. Some people are born with chronic medical conditions, while some may only have mild cases or the illness doesn’t progress very far. For others, the illness comes later and has serious impacts upon their well-being and the way they live. Chronic illness can include conditions such as: lupus; diabetes; chronic fatigue; lime disease; glaucoma; heart disease; cancer; arthritis; epilepsy; haemophilia; kidney disease; asthma; Crohn’s disease; Parkinson’s disease; muscular dystrophy; and multiple sclerosis and many, many more.
One of the consequences of chronic illness is its financial impact and the stresses that result from that. Sometimes people can’t continue their studies or remain in employment which limits their income. Many have high medical costs including insurance, at-home-care, medications, operations, and the need for specialised equipment and even motor-vehicles and home renovations. Sometimes a spouse has to quit their job to provide full-time care for their partner which means that neither receives a decent income.
Sometimes the medical expenses have been so large, that people with chronic illness have had to declare bankruptcy. I can’t imagine how they manage after that.
Emotionally and Psychologically
The emotional and psychological impacts can be huge. As a result of their illness, once physically active people can lose their independence and sense of self-worth. They struggle with depression and feelings of inadequacy and may feel they are a burden to their family and friends.
Others who found their joy and purpose in their careers or their volunteer work, may struggle to find any kind of meaning once their lives are impacted by chronic illness. Some worry how they will manage in the coming years and the thought of the struggles they face may seem overwhelming. This is particularly difficult for single people who have no-one to care for them.
Younger people with chronic illness in particular, wonder if they will ever find someone to love them, or wonder if there is any purpose to their life.
Coming to terms with chronic illness and its impacts can be difficult for many people. Depression is common for those suffering chronic illness. While Christians who enjoy good health think it should be easy for Christians to shrug off depression (or even suicidal thoughts), when a person daily lives with chronic pain, its restrictions, medications, tiredness and the constant worries about finances and concerns for the future – joy can be difficult to find, let alone sustain.
Living with a chronic health issue and its associated problems day in and day out, month after month and year after year, eventually take its toll. I’m sure even the fictional Pollyanna would struggle to remain cheerful.
For Christians, it may be difficult to forgive God or to understand how He can allow someone to suffer this way. This is particularly true when they’ve been obedient and had perhaps given up stable secular jobs to do His ministry and work.
Grief is Part of the Chronic Illness Journey
Coming to terms with the consequences of chronic illness, and its psychological and emotional impacts can contribute to the sufferer feeling grief. They may grieve for the life and opportunities they’ve lost, for their independence or even the chance for love.
Even if a person with chronic illness comes to terms with the impact the illness has on their lives, they may later discover further problems due to the progression of the illness which they hadn’t considered nor for which they’d been prepared. This can lead to higher levels of stress and new feelings of loss.
Younger Person’s Grief
For a younger person, there may be a sense of grief as they learn to accept the real limitations their illness has on their life. It may affect their ability to study, obtain a career or find love. They will see their friends living normal lives and grieve for what they are missing, such as the normal ability to go out and have fun. They may grieve for their lack of independence and their reliance on others for their everyday needs. They may grieve for a life without pain or restriction, or even the ability to communicate easily.
In many cases, young people may be stigmatised by others in their peer group and may face shame and ridicule and prejudice. One frightening statistic suggests that violent crimes against disabled people is on the rise.
Older Person’s Grief
An older person will feel much of what a younger person does, but for a person who has had a career and found a sense of purpose and joy through their work, their hobbies and other activities such as volunteering, the loss of these due to ill health later in life, can lead to extra feelings of grief such as inadequacy and loss of purpose and meaning. It can be especially difficult for them to see how their life after the onset of the illness can possibly be of any real consequence or purpose.
The first thing we can do for people with chronic illness is never to assume that we understand what they’re going through. In fact, someone with chronic illness may not fully understand the journey or difficulties of another person with chronic illness.
We should understand that it may be especially difficult for someone who has enjoyed their independence to ask for help after their body and health betrays them. If we want to help a chronically ill friend or church member, just ask them to let us know how you can help, and follow it up, particularly if they seem dismissive or we suspect they’re refusing help out of a sense of pride or even fear that others may think they are troublesome.
Please don’t offer, if you really have no interest in following through with it. Being let-down by someone who offers to help, may reinforce their belief that they’re a burden and it may make them less likely to ask for help when they need.
Also, don’t expect that it’s easy for those with chronic illness to perform everyday functions that healthy people take for granted. A great example of what this actually means is given by Christine Miserandino with her “Spoon Theory” (see below):
What is the Spoon Theory? It is difficult for healthy people to understand why day-to-day activities can be so challenging for people with a chronic illness, eg, getting ready in the morning can take an enormous amount of energy.
Most people with chronic illness or disability have a much more limited amount of energy than healthy people and therefore have to choose into which activities they place their energies each day. Christine Miserandino came up with this theory when a friend asked her how her illness impacted upon her life.
Life with a chronic illness can be challenging physically, emotionally, psychologically and spiritually. It impacts every single area of our lives.
Few churches seem to know how they can help those in their congregation with chronic illness. Sometimes it seems that churches almost forget about these parishioners, particularly those who can’t attend regularly due to their condition. Perhaps they assume that because they aren’t regular attendees that they aren’t serious in their church or Christian commitment which is often far from the truth. The reality for many with chronic illness is that oftentimes there are specific reasons why they do not attend regularly:
- they are not well enough and/or are in too much pain to attend;
- they have to choose between attending church and another activity;
- simply don’t have the energy to both attend church and do their normal everyday chores;
- didn’t sleep well enough to attend church; or
- feel invisible and/or ignored and uncared for in their church.
Often it is those with chronic illness that need more support from their church family than many others. That doesn’t necessarily mean that someone needs to turn up at their door every day offering to cook, clean or mow, but at least a regular monthly visit or fortnightly phone contact will ensure that the ill person doesn’t feel isolated or that they are looked upon as someone of little value, or a burden.
We should understand that people with chronic illness contribute to God’s kingdom in a variety of ways. I personally know of people who have their own ministries and are a great source of encouragement for their brothers and sisters, and there are others who are amazing prayer warriors. But even those who are too unwell to contribute in such a way are still valuable in God’s eyes aren’t they? Perhaps it’s time then to reconsider the value of those in your church with chronic illness.
Could your church create a group of volunteers who can put aside a couple of hours a month to reach out to those in their congregation with chronic illness? Has anyone within your church even bothered to ask the person/family what specific needs they have?
When was the last time your church instigated a program like this? If you’re healthy, when was the last time you considered volunteering for it? Don’t be one of that group of regular church-goers who give little if anything of themselves, who seem to expect everyone else to do the work.
It is part of Jesus’ command that we love one another. I don’t ever recall the Bible verses saying that we should love one another “only when it suits us,” or “when we’re in the mood,” or “when it’s easy,” or “those tasks were meant for someone else to do.”
If you are suffering chronic illness, it is perfectly natural that you may experience a grieving process. Be aware that as you go through your daily struggles, you may not ever quite come to terms with the impact on your health, mind and spirit. As your illness progresses, you may find there are times when you still have to readjust to new losses and problems.
Remember though, that God sees it all, and even when you feel that you’re alone, this is when Jesus is standing right beside you, His heart filled with compassion and love, His arms stretched about you.
It is difficult for us to understand why God would allow such terrible pain and suffering, especially when we’ve been faithful. We should realise that it’s not some form of punishment, nor as a result of our disobedience. The fact is, pain and suffering always have been and always will be part of the Christian journey.
All we have to do is look back at early church history to see that from the first, Christians have suffered: Paul’s journeys were fraught with danger and difficulty. Church leaders in some of the very churches that he established, later resisted his guidance. Most of the disciples and many early Christians were martyred for their faith. Their lives were not easy physically, financially, relationally or emotionally.
Because we are Christians, it doesn’t mean that life will be perpetually good, problem-free or that we will always feel happy. While others around us may not seem to suffer pain or ill-health, it may seem unfair that we are burdened, but we should remember that it’s not a form of punishment from God.
I say to people that for me it’s “part of the package deal” from God. I jokingly say, “God made me pretty amazing in every other area of my life, so He had to find a way to balance that out.”
While we may never understand why God has allowed this to be part of our journey, we can choose to resist God every inch of the way and stay angry and resentful, but that will not change the situation. Instead it will keep us mired in our depression, hurt and anger, and our relationship with God will suffer as a consequence.
Alternatively, may I encourage you to pray for strength to make it through each day – just one day at a time. Focus on what you can do in the short-term. Ask for courage and to regain your joy. Tell God about how you’re feeling – He won’t feel angry or upset with you. He won’t turn His back on you if you admit any negative emotions towards Him. Jesus Himself understands where you are coming from because of His own personal experiences and suffering as a human being.
Perhaps through your struggles, you will become a powerful leader for God, whether as a prayer warrior or through a ministry, or you may inspire others with your courage and grace. Perhaps instead, your simple, quiet faith will be motivation for others to persevere during their own trials and struggles.
Even if your life feels grey because of illness, there’s no grey in your relationship with God. His unwavering love for you shines as brilliantly as the brightest rainbow. You are His own child. His heart aches to see your pain.
You aren’t just another face in the crowd. He hears your voice – He personally knows your voice – because you are His beloved!
https://www.psychologytoday.com/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness author: Toni Bernhard 2014
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ author: Christine Miserandino 2016