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Living with chronic illness

30 November, 1999

Barbara J Joseph OSF gives practical advice about how to come to terms with chronic illness and discover the grace that goes with the condition.

Serious personal illness brings about major changes in our lives that we need to acknowledge and deal with, changes that are insurmountable without faith.

I did not want scleroderma (also known as systemic sclerosis). With its potential to deform – and even more frightening, to disable or kill – it was a scary disease. My plans and dreams didn’t fit that kind of reality. Some of us accept the limitations of serious illness graciously, meekly, like lambs. We don’t question; we don’t protest. We simply modify our behaviour and continue on. Others – and I find myself in this group – are more like bucking broncos. We try desperately to throw off our limitations. We don’t want them, and we’re determined they will not ride our backs and keep us from business as usual. We don’t have time for them, and besides, they don’t fit in with our plans.

Resisting the diagnosis
Acting in bronco mode, I decided I would fight my grim diagnosis; I would buck until it simply fell away. I bucked and I bucked – and I got weaker and weaker. This wasn’t the way it was supposed to go. My doctor shook her head. “You’re making it worse,” she told me. “You need to stop before you get tired.”

Who ever heard of such a thing? How was I supposed to know when I was almost tired? Outwardly, I scoffed; inwardly, I struggled with this new information. I was making my illness worse. As impossible as following the doctor’s advice seemed, I could think of no alternative. I would have to learn to recognise when my body was almost tired, and I would stop and rest. I did learn, and my body responded. The scleroderma went into spontaneous remission.

While the lamb and the bronco react in very different ways, both can experience fear and confusion when a serious illness is diagnosed, putting an end to life as they have known and lived it. For both, faith is the only true weapon for combating such feelings. As Christians, we can contemplate and find strength in the life, death, and resurrection of Jesus, and we can follow his example, which leads us to new life.

Looking back on my experience, I realise that the space I was in was as important as it was uncomfortable. For out of this space new beginnings sprouted as I worked through five steps that can make a significant difference in the way we view and live the rest of our lives.

1. Name your reality
A few years ago I left a doctor’s office and walked in a daze to the bus stop. Ugly words bounced against the walls of my mind: You have scleroderma. You’re a scleroderma patient. No matter how I arranged the words, I didn’t like them or the reality they described. I had heard the diagnosis before but had never quite believed it. This time was different; I was experiencing a loss of energy and physical strength, along with some frightening respiratory problems. The time had come to name the reality. As difficult as this was, there was a sense of freedom in the naming. We deal better with the things we can name than with those that remain unnamed. Naming is the first step on the path to new life.

2. Bring your reality before God
Jesus named his reality and brought it before God in the garden of Gethsemane, where according to the Gospel of Luke, he prayed, “Father, if you are willing, remove this cup from me; yet, not my will but yours be done.” (22:42) Luke goes on to tell us that an angel from heaven appeared to Jesus to strengthen him. A powerful lesson is contained in those few lines: if we put ourselves in God’s hands and accept what comes, like Jesus, we will be given the grace and strength to bear our crosses. It is important to remember in our darkest days that the cross was not the end of life. Far from it! What appeared to be death became victory over the same death in the Resurrection.

Feeling very dead inside after naming my unhappy reality, I often sat with Jesus, pouring my heart out. I took his lesson seriously, and in the wee hours of the morning, with Jesus as my guide, I began to understand some things. In those hours I experienced his healing presence, not so much in my body as in my spirit. It was the healing I needed most, for Jesus always knows what we really need, even when we ourselves don’t know. Jesus wants us to come to him in our brokenness; he wants to help us.

Several years ago a friend gave me a small sign for my desk. It quoted Proverbs 3:5: “Trust in the Lord with all your heart, and do not rely on your own insight.” Our understanding is limited by our human condition, but God sees the whole picture. Doesn’t it make sense to place our trust in the One with the broader vision?

3. Let go of what was
Sooner or later we arrive at that place where we can no longer protect the identity we had come to see as our own. That identity is no longer valid. My friend Cathy spent hours on end dwelling on what had once been: she used to be able to do this and that; she used to be physically strong; she used to have incredible stamina. The day finally came when Cathy let down her defences enough to hear and accept the fact that this was all past tense; what used to be was no more. This was the beginning of new life for Cathy, but she had to arrive at that point in her own time, and she had to be ready to let go. It took faith and trust that God would be with her and that she would discover herself to be not an empty shell but, rather, a new creation – better than (or at least as good as) her old self.

4. Explore your options
For all those who struggle with unwelcome limitations, the good news is that life exists beyond those limitations. Norma, a registered nurse and mother of two grown children, moved quickly to this point after a devastating diagnosis of multiple sclerosis. “I decided I’d better prepare myself now for what could happen if and when this disease progresses,” she told me. Norma began taking a night course in creative writing, explaining, “It’s something I can do even if I’m in a wheelchair.” That was 15 years ago, and she is still not in a wheelchair. But rather than worrying over what might one day be, she has spent hundreds, perhaps thousands, of enjoyable hours writing everything from horror stories to heart-warming essays and articles based on her personal experiences.

God gives each of us everything we need, including gifts to replace the ones we have lost. But we must be willing to stretch, to try new things, to take risks, and to trust. For myself and the women mentioned here, the health issues that have disrupted our lives and continue to plague us have proven to be stern but excellent teachers. We were forced to give up the identity we had known, an identity defined largely by what we could do, and take a long look at ourselves, deciding who we were going to be from that time on. Jesus – who knows all about dying and rising, who said over and over, “Do not be afraid, I am with you” – was with each one of us in that process. All we needed to do was to take his hand and walk with him.

5. Accept the challenge and move on to a healthier self
In determining a new identity, we need to emphasise not what we can do but, rather, who we are. This is an important distinction and, in my case, I began to realise the value – to myself and to others – of simply being. I learned to be a better listener, a more compassionate friend, a more prayerful and trusting child of God, and certainly a more believable witness.

It often seems that we give physical limitations power, beyond what is rightfully theirs. We are gifted people, and while it may appear that we have lost our gifts, God has stashed away inside us a whole assortment of other gifts just waiting to be discovered and released. Once we begin to uncover our hidden and therefore unused gifts, we will find our limitations replaced with avenues to life. Time, honest scrutiny, and sometimes great courage are needed here, but have no’ fear, for God will not disappoint us.

I have found that moving through this process has brought me to a truer, fuller identity. I realise that, at least in part, I was previously governed by what I perceived to be the expectations of others. When I could no longer meet those expectations and had no choice but to be my own person, I found I was much more at home with myself, as well as more open and honest in my relationships with God and with other people. Dealing with the physical challenges of my life has brought me to a better understanding of and a deeper trust in God’s faithful love.

Did I want these limitations? Absolutely not! Do I value the lessons I’ve learned and the growth that has come as a result to these struggles? Very, very much! Am I healthier now than ever before? Yes, in every way that really counts. I am the best I’ve ever been, through the wonderful and mysterious grace of God.

This article first appeared in Liguorian Magazine and is published here with the permission from

Reality (January, 2004), a publication of Irish Redemptorists.

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