I received a large response to my recent article on chronic illness. I’ve compiled a few choice ones that are representative of the whole. Husbands, wives, ward members, and neighbors can learn what helps and what hurts those suffering from a chronic condition from the clear and excellent guidelines in these letters.
Chronic Illness Turns Lives Upside Down
Julie in Wisconsin wrote,
A few years ago I was diagnosed with a chronic illness. Secondary chronic illnesses followed. My life was turned upside down. I had to stop many of my activities, quit work and had to explain to a bishopric member why I could no longer be the Sunbeam teacher. Surprisingly enough, instead of compassion I was met with what can only be described as coldness, scorn and derision [not just by him, but by many]. I was avoided at church and social gatherings.
I have never been asked how I was doing. People I worked with, and people I thought were my friends asked, “What are you doing now? Sitting home in front of the TV?” I was made to feel I was lazy and worthless for illnesses I could not help. When I go to a male doctor and have to explain some of my problems, I can see the look on his face – “Yeah, sure, another whining woman.” When I meet somebody new they ask me what I do. I am at home, I explain. They always wonder, why, if my youngest child is 18, do I not feel the need to “Do something” with my life.
I do not feel I needed to explain all of my problems to anyone. People need to learn not to judge and realize that each person is probably doing their best. It has been lonely, and yet I have felt the fellowship of His sufferings. I have been humbled and have been more grateful than ever for the atonement and the plan of happiness.
One of the blessings that have come to me in this time is that I have had to prioritize my life. I was placing importance in the wrong places. Heavenly Father helped me to know I was on the worldly path. In the first months after I quit work and my life changed I prayerfully, and tearfully asked the Lord, “What is the most important thing I can be doing in my life right now? How can I make my life matter?” The answer came in the form of one of President Kimball’s quotes: “Become a sister scriptorian.” I have felt the gentle influence of the spirit more fully as I have had time to meditate, and ponder as never before in my life. There has been a silver lining within the cloud!
Men Suffer, Too
Men are not exempt. One brother wrote:
This month marks eight years since neurological difficulties forced me to leave my job as CFO and executive VP of a toxicology research laboratory. It also marks the time when everything else in my life seemed to change. I have been unsuccessful in returning to the workplace. Long-term disability insurance turns out to have been a tremendous blessing, rather than an unused benefit using up precious dollars. Every part of life changed. My wife, who had a brain tumor about the time we got married, has also deteriorated. Taking care of her has become much more challenging as well.
Even church seems different – not the doctrine or the covenants, but most assuredly the people. It seems that many Saints seem to judge one’s spiritual stature or value by the type of employment one enjoys or the financial status attained thereby.
What poignant feelings such letters bring up! As “fellow citizens in the household of Christ,” it is our responsibility to extend our love and acceptance and encouragement to all. How sad that we so often fall short. We all need such wake-up calls to take stock of our deepest values and recommit to treat others as Jesus would.
When a Spouse Doesn’t Understand
A sister from Utah wrote:
My husband is so often frustrated and worried about me and feeling neglected, and we had another talk about it. It was supposed to be our date night, and I so hate to let him down, but I simply couldn’t keep going. He has such a hard time understanding that it isn’t a matter of how much I want to go or not go. He thinks my condition is either fixable, or means I am dying. He can’t fathom the idea that I may simply have to live with it. But he would like a guarantee that any treatment will help before I spend money on it – and there really are no guarantees.
Same old problem – the expectation that at some point this illness should “be over!” And the assumption that is true for most healthy people that if you just wanted to badly enough you could muster the energy to do what you really want to do. But it hurts the most from those closest to you.
Searching for Inner Peace
Becky, from Iowa, who has had a kidney transplant and suffers ongoing side-effects, fatigue, and limitations, wrote:
Years ago, when I complained that I couldn’t do all the things that I thought had made me ME, my husband said, “Well, you cannot be everything to everybody – so decide – and then make a point of being something to somebody.” GOOD thought. So often in the past 18 years [because of my physical limitations], I have had to let go of Plan A and move to Plan B. And more often than not, on the spur of the moment.
I have found that Plan B is workable, once I give myself over to it and quit railing about missing out on MY Plan A. And I have long-since learned that the world will go right on spinning, even if I am not there doing what I think is my part. Who makes it spin anyway? Lots of days I am “the reluctant swimmer in the heavenly pool.” I want to trust that I will be upheld, but I keep one toe on the bottom, just in case.
I am still not totally at peace with myself. I often feel that, considering the gift I have been given – a second chance at life thanks to the altruistic gift of a kidney from someone else – I should be doing MORE. (And last week at a church activity, I was told, “There is another woman in the congregation, Jane, [a person whose name I recognize, but whom I have never met] with a liver transplant who serves on many boards and committees, runs the local Girl Scout Organization of 120 girls, participates in school activities for her children, keeps her home spotless, and goes to Spiritual Study Group at 8 a.m. every Wednesday.” The clanger (said looking right at me) was, “Now SHE is the kind of transplant patient anyone would like to know! After all, there is no fall-back for liver failure like there is for kidney failure and she has truly made the best of her transplant by exerting her POSTIVE ATTITUDE.”
Well, I finished what I was doing, but even my skin stung, if you know what I mean. I felt like I had a slow leak in my personal balloon. I had had to really CRANK myself up to go to that meeting at all.
I had to remind myself that I do what I can do when I can. And that not every trial shows on the surface. People so often say unkind or even cruel things without knowing the whole truth. My Mom reminds me to take St. Francis to heart, when he says, “Let me seek to understand more than to be understood.” But I confess sometimes I get tired of cutting other people slack. I cannot imagine myself saying some of the things that they say to me.
The times I have really pushed myself to be a better servant, I have often fallen over completely and have ended up doing no good for myself or anyone else. When I am feeling well, I do need to go at things with as much gusto as I have – the way the original owner of my kidney would surely wanted to have done. There are just some things – such as lifting and getting totally overtired – that I have to avoid. Otherwise, I need to project a face of wellness and gratitude. Because I do feel BOTH. (But I can tell you, it will be hard to know I fall so short of my critic’s expectations. It’s not so much my desire for recognition as it is my wanting NOT to be disdained.)
Becky’s words capsulize the problem. Not one person with chronic illness wants to be disdained, seen as a slacker, treated as though she were looking for excuses to get out of doing things. Almost always the truth is so much the opposite: they are yearning to do more and mourning their limitations.
Cheryl, who has a constant struggle making ends meet because of his inability to work full time because of her illness, said:
Each day I have to give this over to the Lord and am trying not to worry or blame myself because my illness is chronic and others hint that I should “be better by now; “we should earn our bread by the sweat of our brow”; or “if we’re living right the Lord will prosper us.” This has been such a test for me and most days now I win but the fight never seems to go away. I am also one who feels guilt when I am not “producing” in some visible way. Life is interesting but definitely worth it in the end.
“Let Me Know If I Can Do Anything” Is Not Helpful
Debbie from Utah wrote:
After three years of trying to cope with various illnesses, I had become confused about my mission in life, my relationship to God, and even my role as mother and wife. My discouragement was evident to many, but no reassuring words were ever given; just looks of pity and many offers I never followed up on of, “Let me know if I can do anything to help.
A month ago, our faithful Home Teachers came and gave us a lesson on adversity and how it can bring us closer to God. Our Home Teacher complimented me and said I was a fine example to the ward of someone who had become closer to God as a result of their challenges. I was not trying to be rebellious, but found myself explaining that my illnesses were not helping me become closer to Him, in fact, just the opposite. I admitted that I hated who I have become: resentful, self-centered, confused, always sick and tired, and rarely feeling the Spirit! I asked them what I should do to thwart my downward spiral. The visit was cut short. They quickly left [with the words I’ve come to feel are empty]: “Call us if there is anything we can do to help.”
It wasn’t until I read this article that I truly feel real hope and deliverance from my despair. I planned to comment on a few of the wonderful ideas in the article, but they were all so great that I will forgo that time-consuming job. As I finished reading “Gifts and Challenges of Chronic Illness,” the first thing I did was to bow my head and thank Heavenly Father for such inspired words of wisdom. I hope for more concerning this topic.
Watch for follow-up articles including one containing specific suggestions from readers and another exploring questions such as the balance in looking for answers and relief vs. accepting chronic conditions as God’s will and making the best of it.
A Reader Reports of Support and Help
This morning I went directly to the MM website, and right at the top was this article by Sister Isackson. I also have a chronic illness – CFIDS, now commonly known as Chronic Fatigue Syndrome. Sister Isackson’s sharing of part of her story sounds exactly like myself with illness and the activities, realizations, etc. My husband passed away about 18 months ago. [Doing many of the things he used to do] has been a great challenge for me, but I have moved forward with Heavenly Father’s love, guidance and help. I still have many physical down times weekly because of CFIDS.
I am also getting older, and that plays a part in the energy levels. But I still do what I can, when I can and have a very full life in spite of CFIDS and find much daily satisfaction and joy in my life. A husband and wife who live close to me help me with things I just cannot do. Before, I had my husband to encourage me daily in addition to Heavenly Father – now I rely totally on Heavenly Father. During all of this, Heavenly Father has helped me realize many things and my family, friends and acquaintances have been wonderful. But lately I had been feeling that I really need more emotional support than I was getting from others (probably because none of them experience chronic illness and they all have very busy lives). Reading this article has given me a new and additional buoyancy as well as confirmation and support of some emotional needs.
Attitude and Trust in the Lord
I was diagnosed with Epstein-Barr in graduate school, and have been hit for the past three years with what is appearing to be something like chronic fatigue or fibro. It’s the hardest trial I have ever experienced. I am grateful for your willingness to share from your heart. I think this type of thing may make it possible for those of us who struggle like this more bearable.
One of my newest sayings is that, “Life is not about getting stuff done; it’s not about doing, it’s about becoming!” (Of course, that last bit is from Elder Oaks, and I’m learning how true that is!) That is so HARD when I have spent so much time finding satisfaction and self-worth from tick marks on my to-do list! It is also hard to let go of things like having more children when I thought that was my plan. Alas, the Lord must have other things for me to learn right now than I would learn from having more children. *sigh*
I also love your points about attitude. That understanding makes a huge difference in this trial (when I apply it). A friend recently shared with me that her fibro is “her little friend” that comes to visit. She takes it in stride instead of getting frustrated (which I so often do).
It takes energy to despise your cross and wish it to go away. I think I will put that quote you shared on my wall! 🙂
[Through this trial I have come to] understand and trust COMPLETELY in God’s love for me. Last summer I had the blessing of singing in a choir. I especially loved a couple of songs that we sang. Here are some of the words:
What though my joys and comforts die, the Lord my Savior liveth. What though the darkness gather round, songs in the night He giveth. No storm can shake my inmost calm while to the Rock I’m clinging. While Christ is mine, and I am His, how can I keep from singing?”
The God of love my Shepherd is, and He that doth me feed. While He is mine and I am His, what can I want or need?
At the beginning of the summer, I sang these songs with a desire to feel the truth of the words. By the end of the summer, I was able to sing with more conviction and testimony. I wish I could explain all the things that helped me gain a testimony of God’s love; it was an amazing string of tender mercies. The Spirit helped me understand this doctrine in a significant and meaningful way. He has also helped me know of His love through others. (President Kimball says that the Lord does notice us, but it is usually through other people that He meets our needs….)
Trials are not evidence of God’s LACK of love. We need to trust that. He loves us perfectly, and knows what we REALLY NEED, which is why sometimes we don’t get what we think we need. As President Faust said in conference a while back, “God loves us more than He loves our happiness.” When I really trust in that, my burdens are lighter, and I feel closer to Him.
Amen, Michelle. May we all have our burdens lightened by being less judgmental, more compassionate, and more trusting in God’s plan and caring for us. And may we all extend love and not judgment to those around us.
Love and blessings,