How friends & family can help people with chronic illnesses

Tomorrow kicks off CFS/ME awareness week and I will be posting each day mainly creative things that us suffers have created to raise awareness.

But to kick off the week I thought that this would be a great way to get the ball rolling, in one of my online groups we created a document to give to friends, family or anyone else who it might be useful to; of things we thought that those around people with chronic illnesses could do to help make our lives easier.

It is hard for us suffers but it is really hard for those around us too, often those around us feel helpless and don’t know how they can help, this is a list (obviously not exhaustive) but to get people thinking of the little things they can do to help.

How family, friends and the community can best help people with chronic illnesses (like ME/CFS, FM, MCS, MS)

  • Take time to “just listen” sometimes and encourage them to pace themselves.
  • Offer to take them to their Doctor’s appointments.
  • Offer to make a casserole or pot of soup once a fortnight OR whatever is manageable for you. They will greatly appreciate it.
  • Offer to grab them some groceries when you go shopping or pick up a prescription.
  • Help them put needed services in place ie. Community services, domestic assistance, if required.
  • Get them out of the house, even if just to the park down the street or to sit in the car in the car park at the beach for a short while. Every now and again is great, if they are well enough.
  • Don’t forget or avoid them please. Make them part of your world ….the loneliness is the hardest part of this illness
  • Look at the person with CFS as the person you’ve know as a friend and family member and do not judge them for being ill Understand and listen to what they tell you If they are trying to tell you about their illness it’s because they trust you not to judge them.
  • Do small activities with them that they are able to do eg. a warm blanket on the couch and watch a movie.
  • Play online games with them like Words with Friends or Scrabble
  • Ask how they feel and if it’s a better day but please don’t tell them how great they look. They know they look healthy on the outside but on the inside they are miserable and sick.
  • When you call them on the phone to chat, ask how many minutes we can manage that day – and keep the time for us so we don’t have to get you off the phone.
  • Just listen to them and resist offering your advice unless it is asked for!
  • When you visit, allow them to be hospitable if they are up to it but also offer to make a cup of tea and just sit on the couch and chat gently for a while.
  • Understand that perfumes and scents can cause strong symptoms in some people with MCS, so respect this, we often like to keep our home as a “safe environment”.
  • Talk to us about your hobbies and interests.
  • Offer to run errands for them or do small jobs around the house eg. Wash a window or two.
  • Offer to help and continue to offer, even if you may get a ‘no thanks’ sometimes.
  • Text them first to see if they are up to taking a call or a visit. Best to not just drop in unannounced.
  • When you visit, feel free to make yourself at home and fold washing while we chat!
  • If they are depressed, remind them how amazing they are, what it is about them that you admire. Sometimes this can help tremendously and when really ill, it can become all consuming and we lose our sense of identity and worth.
  • As a sufferer, I have a day a week that my door is open to all my friends and family from 5PM until 9. This keeps me in touch with everyone and suits me best.
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