Note: this article was written by a person who has a close family member with a degenerative disease.
Often when life seems to be going smoothly, we’ll say, “God is good.” Yet we aren’t always so quick to remember this truth when a degenerative disease becomes part of our reality.
One key in coping with a degenerative disease such as Alzheimer’s, dementia, Parkinson’s disease, muscular dystrophy, Huntington’s disease (HD), or amyotrophic lateral sclerosis (ALS / Lou Gehrig’s disease), is to remember that God is good. No matter our circumstances, God’s character does not change. The God of the Bible is the God who is today. His promises still hold true. Our circumstances do not change Him or His purposes for us. God is actively working “all things” together in His grand plan (Romans 8:28). For some people, one of those “all things” is a degenerative disease. God does not say that all things are good. But He does work for the good in all things; God is a redeemer.
The Bible also tells us that “we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do” (Ephesians 2:10). A disease does not change this truth. God still has a purpose for those suffering with degenerative diseases. When we remember that God is in control, that He is good, and that He is for our good, we can more easily accept the reality of a degenerative disease. We can trust that He is at work, even if it feels like we have been abandoned. Keeping the truth of God’s character and His faithfulness toward His own is vitally important for anyone affected by a degenerative disease. This allows us to keep a right perspective and maintain hope. A few other things should be considered as well.
Being diagnosed with a degenerative disease is a very difficult time. Many sufferers are unaware of their disease for years, and once symptoms start becoming prevalent, diagnosis may still take months or years. Obtaining an accurate diagnosis can be somewhat of a relief, but it can also feel like a life sentence. Degenerative diseases are incurable and progress with time. Medically speaking, there is no getting better. This is where it is crucial to remind yourself of who God is. This disease is not a surprise to Him. He has known all along and has made provision for you. Staying grounded in God’s Word, particularly His promises, is very helpful in coping. Keep praying. Call out to God and “cast all your anxiety on him because he cares for you” (1 Peter 5:7). It is okay to be real with God about your emotions, while also remembering the truth of who He is. The Psalms are an excellent example of this type of prayer. It is also important to stay connected with Christian community. Romans 12:15 tells us to “rejoice with those who rejoice; mourn with those who mourn.” It is important to share your burden with the body of Christ so they can provide support.
Usually, after diagnosis, practical planning begins. This is where financial, legal, and medical plans are put in place. The process can feel overwhelming. It is important to plan ahead, but it is also important to continue to engage with daily life. The biblical example of the Sabbath comes to mind. Rest and recreation are important even in the planning stages. In planning, consider not only the long-term (financial provision, power of attorney, health directives, etc.) but the short-term (a care plan for your current daily needs).
Degenerative diseases often involve symptoms that make the activities of daily living more difficult. It is important for those with the disease and their caregivers to understand the physical and intellectual abilities of the person with the disease, recognize that these abilities will change over time, and communicate with one another about these issues. By its nature, a degenerative disease forces the sufferer to need more assistance as time goes on. The one with the disease should continue to do as much as he or she can but should also accept assistance when needed. When the communication lines between the person with the disease and the caregiver are open, the appropriate level of assistance can be provided. Actively working to maintain one’s abilities helps in slowing the disease’s progression and helps emotionally as well. Focusing on what a disease sufferer can do, rather than on what he can no longer do, helps in maintaining a positive perspective and sense of purpose. We can be grateful to God for what we have rather than become discouraged by what we no longer have. In many ways, this is putting Philippians 4:8 into action.
Even if a task takes longer than it used to or could be accomplished more easily by a caregiver, it is important to do what you are able. Satisfaction derived from work is part of God’s original design (Genesis 1:28). Accomplishing tasks, even as small as putting on one’s clothes, emptying a dishwasher, or conversing with a caregiver, can help a disease sufferer maintain a sense of personhood and a sense of life. Remember to do things that are fun as well. Having a disease does not exclude a person from the joys of life. Relish things like time spent with family and friends, favorite foods, the beauty of creation, a good story, music, etc. It isn’t just performing tasks that gives us a sense of purpose, but also enjoying the beautiful and pleasurable things of life. God has included you as part of His grand plan.
Often, the best approach for responding to a degenerative disease is to assemble a care team involving family members, a doctor, appropriate therapists (speech, occupational, physical, mental health), other medical professionals, and Christian mentors or pastors. Each person brings his or her own specialties and insight into the situation and then can coordinate appropriate care. Ensuring the correct people are in place and building a relationship of trust with these individuals is vital to helping the disease process go smoothly. For Christians, this can be an excellent opportunity to witness. People will be watching how you cope with the disease. Allowing the light of Christ’s joy to shine through and demonstrating love to the care team can be an incredible testimony to who God is. Perhaps one of the greatest gifts a person with a degenerative disease has is a unique ability to shine the light and love of God in a dark world. The world expects people with degenerative diseases to be hopeless or self-absorbed. But Christians can be a witness to Christ in maintaining His joy, graciously accepting assistance, and engaging with life.
Aside from these more practical matters, it is imperative that those with degenerative diseases do not lose sight of who God is and of who they are. A degenerative disease can feel consuming. It is easy to begin to identify as the disease rather than as a person. This is part of the reason it is important to maintain social connections, especially with fellow believers. Christian fellowship is important for the whole body of Christ (Hebrews 10:24–25). Having a disease does not make a person any less needed in the functioning of the body. Keep engaging in hobbies, continue to meet with friends, continue to serve.
Battling a degenerative disease is a daily hardship. Apart from a miracle, the disease is likely not going away and is only going to worsen. Maintaining hope can be difficult. Having a degenerative disease causes you to struggle with tiredness, discouragement, and a draining of mental or physical reserves. For Christians, our hope is in the Lord. Making an effort to keep God’s truth at the forefront of your mind is vital. Also, following medical instructions for treatment is important. Many also find it helpful to engage in fundraising for research or in studying current research about possible cures and new treatments. Accepting the disease and choosing to receive it as something God will use in your life is essential. It can be tempting to rail against the injustice of the situation or the unfairness of disease. No one plans to have a degenerative disease, and getting lost in the what-if’s and if-only’s is a temptation. But our faith tells us that God has a plan in the midst of the world’s fallenness, and ultimately God will create the world anew. Seek to live life to the fullest in Christ (John 10:10).
A quick word for the family members of those with degenerative diseases. As you know, this disease affects you, too. Just as it is important for the person with the disease to maintain hope and actively engage in life, so, too, is it important for families. Many family members are involved in daily caregiving. This can be physically and emotionally exhausting. Caregivers need to take care of themselves as well. Engage with supportive friends, talk to a counselor if you need to, do things that are fun and life-giving to you, keep track of your personal health, and maintain good eating, sleeping, and exercise habits. Talk with other family members. Open communication among the family and with medical professionals will help the logistics to run smoothly. Remember that your family member with the disease is still a person. Treat him or her as such. Don’t give in to the desire to disassociate the person you love from the person who has a disease. One gift of degenerative diseases is that they remind us of the shortness of life and of what is truly important. One of those truly important things is relationship. As much as you are able, continue to relate with your family member and enjoy the time God has given you together. Allow yourself emotions like anger and guilt and fear, but also happiness and excitement and peace. Life is not this disease.
The reality of degenerative diseases makes us long for our heavenly home. Degenerative diseases can also remind us of the great hope we have in Christ. When a degenerative disease becomes part of our personal reality, we can be angry and despair, or we can be reminded of what is truly important, press into the truth that we serve a God who loves us, and make the most of every opportunity we’ve been given because we realize in a unique way that our time is limited. A degenerative disease will change your life and the lives of those you love. It will be challenging; it will require perseverance. But take heart, Jesus has overcome the world (John 16:33). Enjoy the gifts He has given, rejoice in today, and “press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus” (Philippians 3:14). He is faithful to sustain you and to complete His good work in you (Philippians 1:6).