“How chronic fatigue syndrome gifted me new strength”

“How chronic fatigue syndrome gifted me new strength”

In March 2019, a mystery illness left the Revd. Stephen Gamble bed-bound and in a semi-unconscious state. He faced the prospect of never working again – and losing his job and his home. But when a trainee doctor identified the symptoms of chronic fatigue syndrome, hope returned and with it an opportunity to slowly rebuild his life. Now, he is a vicar once more, and his experience is giving strength to others facing troubled times.

Gary Firkins interviews Rev Stephen Gamble

 

Tell us about your illness?

I have chronic fatigue syndrome, but it took years for it to be identified. After leaving university I taught, I ran a second-hand furniture shop for a while, and later I was a verger at Leicester Cathedral, before going to theological college in Durham. It’s was three-year degree crammed into two years, combined with community duties, and church placements. You are warned you will be doing long hours, and you do – it proved to be extremely demanding.

I first started to faint at the end of my time at theological college. It was awful because I knew it was coming on but I couldn’t stop it happening. There’s a great pounding of blood in my body, the blood dropped from my head and slowly I lost consciousness. It’s a violent sensation, sickening and leaves you with a colossal headache.

What happened next?

After college I couldn’t wait to get started. I completed my curacy and had a huge amount of pent-up enthusiasm going into my first incumbency. I found myself doing 60 and 70-hour weeks, which I knew wasn’t good for me. Just after I started my curacy I had ended up in hospital after a faint. Varied and many tests were done, but the doctors simply concluded I had a tendency to faint. As the fainting remained a problem over the next few years, I went to see more doctors and was then referred to different specialists. One fainting specialist even hung me upside down from a board as part of an experiment to see what was wrong with me. And at the end of it he said, like the others: I had a tendency to faint.

Was fainting the only symptom?

I was suffering periods of brain fog, which means difficulty in concentrating. It’s a term that’s common now, but it wasn’t back then. I was also starting to experience fatigue and aching muscles. This was in North Yorkshire where I was vicar of nine churches. As the hours I worked went up or down, so did the symptoms. For years I tried to manage this, and it had eased in my subsequent post where I had four churches, but then a couple of significant people in my life passed away and I took the funerals. Within a few months, in March 2019, I suddenly had a massive fall in my health and couldn’t work. I was having to go to bed. I was just about able to get up and eat, but the eating wiped me out. It was like a light had been switched off in my head and I was barely conscious.

When were you diagnosed?

I was having every test available, but the doctors still couldn’t say what was wrong with me. It was stressful because the diocese had a vicar in post who couldn’t work, and there was no medical explanation. I didn’t know how long I was going to be like this.

Then, at one GP appointment, a trainee doctor was present. She immediately spotted the symptoms as chronic fatigue syndrome, and the GP confirmed this. It was such a relief to finally have a potential diagnosis and feel that something could be done. There’s an NHS process for it and I was put on that pathway.

What was the advice?

I was eventually told it would be dangerous to return to full time ministry. The consultant and my occupational therapist weren’t even sure whether I would be able to return to part-time work or a regular full-time job. Now that I had the information, I felt I had no choice but to resign because there was no way I could return to work as I had hoped. It was terrifying because not only was I losing my income, I was losing my house, too. It also made me question my calling as a minister, if I couldn’t work as a vicar, who was I?

I was blessed in that I was able to move into a house owned by a lay minister I once worked with. He and his wife’s kindness was extraordinary. It was in the countryside in North Yorkshire. This happened just as the country went into lockdown. So, in some ways, I couldn’t have been in a better place to be recovering from illness, especially when I needed stillness and quiet. When the rest of the world wasn’t allowed to go out, I was able to take gentle walks in the fresh air, slowly recuperating. To begin ministering again was extremely painful. I volunteered in a group of churches in interregnum, the parishioners’ support and goodwill helped me heal, and reconfirmed my calling.

What are the causes of chronic fatigue syndrome?

It’s not really known what causes it, but there are two possible reasons. The immune system gets stuck in ‘on’ position, so even though a virus has gone, the immune system remains highly active, using huge amounts of energy in the body. Or, it’s stress. Your stress system ends up locked ‘on’ and continues powering away despite the fact there is no longer a stressful event.

It’s complicated because the immune system and the stress system are like two cogs connected to each other, which is partly why it is so hard to determine what the cause is. I liken it to sitting in the car with the engine running but the car is not in gear. You’ve got the accelerator down to the floor and you’re using a huge amount of energy even though you’re not going anywhere. From a stress perspective, it’s cruel because you feel very strong anxiety, like your life is in danger, even though in reality there’s no real threat.

Are there treatments?

There are no medical treatments for chronic fatigue syndrome. There used to be anti-inflammatories which helped. The problem was it didn’t work for everyone, so the NHS licensing body withdrew the treatment, despite the fact it helped many people.

Non-medical treatments include breathing exercises, and regular periods of being still. Gentle exercise, such as walking with breaks, helps. I find being in nature to be calming. Chronic fatigue syndrome never goes away, but you can manage it by being disciplined with regular breaks through the week. That’s why I’m only able to work part-time, and can’t work all that many evenings. I also find an anti-inflammatory diet helps.

What do you want people to learn from your story?

Firstly, I want people to know God can see you through hard times. Also, I want people to know about chronic fatigue syndrome, what it is and how debilitating it can be – it’s absolutely not just feeling a bit tired. I think I need to say quietly and in a non-confrontational way to the church that they need to have a think about how they are looking after the ministers in their care. What the church calls ‘burnout’ is an issue that needs to be addressed. My illness coincided with entering the ministry and its severity appears to be linked to the number of hours worked and associated stress. I understand this is subjective, and I can’t prove it, but I think there is an issue here, not just for me, but others, too – and a compassionate and understanding response is required. It seems to me the Church of England produces reports about workload, but not practical measures to help.

What have you learned about yourself and your faith from the experience?

A hospital chaplain said to me that because people are aware I have been through profound suffering, they will be more open with me, more willing to share their difficulties, and even if they didn’t know they would sense it. I think he was correct. I can see how people relate to me differently, what effect this is having. In a way, it’s a gift. Not one I would necessarily have asked for, but an unexpected gift and one that has created a change in quality in relationships with parishioners.

In the New Testament, Paul makes it clear we minister out of a place of weakness. I’ve been made very weak, but I’ve seen in that weakness that God has done some incredibly strong things. It wasn’t my strength – completely the opposite. It was my weakness He was working through.