I attended the funeral of a family friend this week and wanted to share some advice about funerals for CFS sufferers.
If you occassionally use a wheelchair to help get around I’d recommend using it to attend a funeral. I wanted to stand on my own two feet and pay my respects – but funerals are quite exhausting in many ways.
Practically speaking the seating in churches and even crematoriums is not designed to be comfortable. Sitting on a wooden pew or bench can be quite tiring for the CFS sufferer and you may find remaining in the wheelchair is less tiring physically.
Arrive a little early and you’ll have plenty of time to find a space either at the front or at the end of an aisle. If you are part of the main funeral party make sure you explain your extra needs to the funeral directors.
During the ceremony if you are able to stand and feel you want to, even if you using a wheelchair, then do it. Don’t worry about what other people may think. This is a deeply personal experience.
Be warned, that certainly with church funerals there’s a lot of alternating between sitting and standing. You will be asked to stand for some parts of the service and during hymns. Don’t be afraid to remain seated if this is what you need. It’s quite cacceptable and not dis-respectufl – your respect comes from within. Also it’s now perfectly acceptable to bow your head during prayer – no need to struggle to kneel.
I struggled a little with brain fog to follow the words to hymns on the service sheet. It can happen. If you struggle it’s ok not to sing.
If you asked to do a reading or say a few words at the funeral try and think practically whether you will be able to. It’s better to be honest and explain the situation to people, most people care and won’t want you to push yourself and make yourself ill. If you want to speak at the funeral but you’re not sure you will feel up to it on the day you could ask a friend or relative if they would consider reading something you have prepared, even to step in at the last minute if you feel unable to.
Do not underestimate the strong emotions of the day and the effect they can have on the CFS sufferer. This in itself can be quite tiring.
I found I had a very strong reaction to the death of our family friend, even though we were not close personally. It’s possible that news of a bereavement can trigger feelings of other grief and loss, perhaps unresolved from the past. Also to bring us to think about our own life, mortality and the quality of life we have. I found myself also pre-oocuppied with the huge amount of love and support I continue to receive from my loved ones, as well as grieving the loss of the life and possibilities I had before CFS and consequently a little guilty at being so internally focused at such a sad time.
All these feelings are natural. It is best to accept these feelings rather than deny them. You can find good advice for dealing with grief and loss on the internet and other sources – much more qualified to give advice on these matters than me! But please know it’s ok and not unusual to feel a range of emotions at this time.
Funerals are useful ways of dealing with the feelings of loss that come with a death. I wish I had allowed myself to cry more and feel more instead of holding back at the funeral last week. I was worried it would exhaust me – but I now feel it would have helped me even more.
Finally, if you are not well enough to attend a funeral consider having your own private ceremony at home to co-incide with the funeral, or find a personal way to mark the passing of and celebrate the life of the person who has died. Perhaps saying a prayer, reading a poem, lighting a candle, playing their favourite music.
I’m sorry if these tips seem a bit basic but there were a lot of things that hadn’t occured to me until I attended a funeral as a CFS sufferer and suddenly found some unexpected difficulties.
I’m not able to offer advice to CFS sufferers recently bereaved and needing to organise a funeral. But I would be very happy to link to your advice if you have experience and practical tips in this regard.
I do know however that we don’t stop being ill because someone we love is facing death or has passed away. At this time more than ever we need to be able to ask for help – emotional and practical – from those around us.
You can find more (non CFS specific) advice about grief, bereavement and funerals in the UK here: