Invisible Illnesses

Accident and disease can affect anyone. We have all experienced illness to some degree. Sometimes it is genetically inherited, or is the result of our own actions and choices. Our later years often show the consequences of things thought to be harmless or low-risk at the time. That’s life.

Usually illness, injury or disability are met with sympathy and kindness from others and that restores our belief in the goodness of most people. A leg in plaster draws out compassion pretty quickly! But what happens when a sufferer with an “invisible condition” is struggling but doesn’t look ill?

There are many conditions that don’t appear obvious. From diabetes to depression, or kidney failure to cancer, the patient often looks fine and others tend to assume all is well (at least in the earliest stages of the disease). I have become personally familiar with some of these “invisible” illnesses, through supporting sufferers in churches & communities: and four years ago through developing a condition named fibromyalgia.

Partly for my own benefit, and partly to raise awareness, I am going to write about my experiences. There may be others who have conditions like M.S. or Lupus,  M.E. or Chronic Fatigue who may have had similar journeys. I hope that you, the reader, may be able to understand and think about appropriate responses to those going through the mill. Perhaps my personal reflections and adjustments may help all of us.

Life changes…

Bodies creak a bit more as age progresses. If only we came with an operating manual and a “Troubleshooting” guide for discerning what is “normal” ageing and what is a problem that needs medical attention!  Over the last few years persistent aches and pains increased enough to send me to the Doc. Other things like fatigue, poor sleep, loss of muscle strength and grip, and mental “fog” meant I was only functioning at about 50% of capacity.

My local surgery in Luton excelled. The GP I saw first got the ball rolling and referred me for tests and a consultant’s appointment. The other doctors were also supportive and compassionate- good old NHS!!! The team at Luton & Dunstable Hospital proved equally helpful as every possibility was explored.

Diagnosis: Fibromyalgia. “We don’t what caused it, we don’t know how to cure it, but we can try to help you cope with it.” And they did their best.

As the months passed by, I was given a Blue Badge for mobility issues, and given a medication regime that helped control the pain.

Fibro is a medical mystery; it seems to be linked to the central nervous system and possibly the auto-immune system. Sleep patterns are disturbed which makes fibromyalgia worse. Joints and muscles hurt. The body needs extra vitamins B, C, & D. Fish oil supplements can help joint pain/mobility a bit. All sorts of theories and “cures” for fibro exist, but few work consistently well- and it seems that no one treatment helps every patient.

Even the pain is different- medically speaking, “acute” pain is relatively easy to treat. Paracetamol or ibuprofen work well, and there are other stronger prescription analgesics to turn to in need. But if a condition becomes “chronic” the brain handles pain differently. It feels (in fibromyalgia) as if the pain receptor/amplifier is turned to “Maximum” all the time. There is a range of pain types: aches, throbs, stabbing, “electric shock” events that can leave fingers and toes numb or tingling. Skin becomes sensitive to touch and can become itchy; the eyes are over-sensitive to light, and the ears over-sensitive to sound (even hearing someone talk can be agony).  Small injuries hurt disproportionately; exertion becomes exhaustion quickly.  The usual analgesics don’t help much at all, and the stronger stuff only helps a bit more. Stronger opiates generally don’t help for long, and risk causing addiction.

There is a small cluster of pills that help: these are usually prescribed for other conditions, but have been found to be effective in masking the pain and aiding sleep. Techniques of mindfulness and meditation help, and learning to adjust the way we look at life through accepting the limitations and yet refusing to “give in” is necessary. Fibro is not “all in the mind” but the way we think is important in dealing with with the actual, real, pain. I have found it necessary to accept the condition for what it is, and learn to pace myself. Slowing down, reducing stress, saying “no” more often, and realising that you can only do a fraction of what used to be the “norm” is essential for every patient.

My best description: it feels like I have played a Cup Final the day before- everything is sore and aching- with the bonus of a bout of moderate ‘flu added in for good measure. Exhaustion is normal. Even gentle exercise is impossible or agonising on a bad day. Concentration is poor, and decision-making under pressure is rubbish.

End result: early retirement. The Stanton Road/Hadrian Fellowship in Luton were amazingly kind and supportive, showing deep love and concern. But I couldn’t continue as pastor; for my sake and for theirs it was time to stand aside. Certainly retirement has helped through removal of stress and the expectations of others. “Pacing” life is easier when the diary is flexible. And I can still contribute provided I understand my limits and don’t try to be Superman!

Reactions

“But you look so well…”   “Will taking XXX help?”   “My auntie has a cousin who tried…” moved on to “You need to use a stick now?”  and “You look quite weary.” Well meaning comments about the lives, ailments, treatments and quirks of other people do not go down too well after the first twenty or so! (Please think before you speak.) Suggesting that people with invisible illnesses are lazy, or attention-seekers, or “it’s all in the mind” and should just pull themselves together and get over it… well, just don’t say it out loud!!!

What about Christian Healing?

“You’re a minister- you shouldn’t be ill” or “Have you prayed to ask for healing?” are unhelpful comments based on poor theology. ANY of us can suffer illness or accident. Christian faith is not a form of insurance policy. (Yes, I have prayed- and others have prayed with me- but I have not been physically healed and restored, yet.)

I believe in God, who is Love. I believe in Jesus Christ as Saviour and Lord. I believe in the Holy Spirit who works within us. I believe that God CAN and DOES heal all kinds of sickness and grief. I also believe God is Sovereign, and that my eternal life is a grace-gift that guarantees my wholeness- if not yet. Because of that, I trust that all is well, all will be well, and that “wellness” is guaranteed by the constant Presence of the Lord. For now (and probably for life) I am still unwell, and one day I will die. The promise goes far beyond the limitations of this body and time.

I believe in healing, and I believe God loves each one of us with a passion beyond words. Sometimes true faith says aloud with the prophet of ancient times: Habakkuk 3:17-19 “Even though the fig trees have no blossoms, and there are no grapes on the vines; even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty,  yet I will rejoice in the LORD! I will be joyful in the God of my salvation! The Sovereign LORD is my strength! He makes me as surefooted as a deer, able to tread upon the heights.” 

Trust rises above the suffering. Yet it is OK to say to God- “OUCH! That hurts! Lord, please take all this away. But if not, please do not leave me alone.” It is the kind of prayer of Jesus in Gethsemane facing an unjust trial and barbaric death. It isn’t saying that we are as important as Jesus, or our sufferings are of equal nature to those of the Saviour. It is saying that Jesus has promised to be with us always, in real life, in sickness and in health.

There is always mystery in faith, and more questions than answers in theology. We are trying to understand God who is beyond our comprehension, and a world that is too complex for “pat answers” to offer much help.

What can we do to help?

Be sensitive. Be kind. Try to understand, and just BE THERE for a friend, for family, or a stranger who may suffer in ways you cannot understand. By all means pray for healing; but don’t you dare make someone who is suffering feel it is their fault they’ve not been healed or that they “don’t have a strong enough faith.”

The person in front of you may not look ill. There probably are things that would make their lives better. They may be struggling because the doctors have run out of ideas or treatments to offer. Don’t try to put them right. Don’t patronise them, and don’t demand things they cannot give. Listen more than you speak.

The ILLNESS may be invisible- but the PERSON is in plain view. Be as compassionate and patient as you can- and they will be grateful forever. And please make allowances for us when we are grumpy, or clumsy, or forgetful, or downright mean. It hurts. We don’t mean to lash out verbally… but, honestly, it hurts. We used to be able to do so much, and now our horizon has shrunk. No wonder we react badly sometimes. “Be patient with me: God hasn’t finished with me yet.” There is a true hope and promise: it is in God’s hands and in His time. In this life or in eternity, God will restore and renew.

Revelation 21:4 (NLT)
“He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

Thanks for reading. Feel free to pass it on if it might help someone else.

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Update– in 2019 routine blood tests highlighted a potential problem- I had become anaemic, so the doctor sent me for more tests at the local hospital, St Richard’s in Chichester.

The camera showed an unusual growth in the colon, and the Consultant broke the bad news that it was cancer and needed urgent surgery.  Nothing quite prepares you for that! Within a week, I was in for the operation.  A six-hour surgery was successful, and I was on the ward for 18 days in recovery. My body will be re-examined annually in case the cancer returns. I am deeply grateful to the surgical team and the nurses/carers who looked after me. They saved my life.

I mention this, not for sympathy, but as a reminder that patients with an existing condition should not assume that any new/different symptoms are connected with the “dominant” illness. Invisible illnesses are dangerous because they can be blamed for everything!

But my comments and reflections on health, healing and theology above still apply. Being kind and understanding to those who are ill is a very Christ-like attitude worth emulating.