When your friends/family are chronically ill
Watching anyone we care about suffering is horrible. When they are suffering from an illness which is invisible it can be difficult to understand and frustrating that they are unable to perform the tasks they used too. They may need to rely on us more, seek reassurance and support, it can be tiring and never ending. As much as you feel frustrated and tired stop for a moment and imagine how they feel. That frustration at the once again canceled plans, in their shoes imagine plans they were looking forward to - the highlight of their week but their body is preventing them from enjoying it.
Often when people are ill we visit, take flowers cards and gifts, make sure they know we are available for them. When people are chronically ill that attention and support can fade very quickly and they instead are left feeling forgotten.
What can you do to help?
1) Can you arrange regular visits or a set time when you can keep them company. As often as you can reliably manage, it may make more a difference than you know. Agree a time or call in advance and check it's okay.
2) If they are not ready for visitors or if you are too far away or have other commitments can you make that regular phone call and let them know they have not been forgotten. If they would rather be alone can you send a card, text message or email - find a way to let them know you thought of them today. Declining a visit isnt personal - its not because they no longer care about you, maybe they need time to rest or to process their feelings.
3) If you are visiting can you do anything to help them practically - offer to go past a shop for basics and shopping, or to pick up ice cream or donuts as a treat? Is there anything they need or would like?
4) While there are there any small jobs they would appreciate help with? Cooking a meal together, washing those few dishes that are lying in the sink. Ask them if there is anything you can do. Dont walk in the house and take it upon yourself to do all the housework, they may feel that their house was such a mess that you felt compelled to clean it - how would you feel if someone did that, ask when you can rather than judge.
5) Keep talking to them as you always did, when you ask a question make it a genuine one - asking how are you is a polite greeting but do you really want an accurate answer, ask clever questions and listen with genuine interest. It's not all doom and gloom though ask them if they want to hear about what has been going on at work/ college/ school etc. Tell them your news and keep them involved by sharing your achievements and dilemmas- keep it real.
6) Interested in their condition - you could do some research but ask questions - ‘I read some people experience this symptom do you have that dont assume that you are an expert after one article everyone is different
7) Empower them to make choices - sometimes encouragement and persuasion is necessary and we want our loved ones to meet their potential but dont take away all of their choices or make decisions for them discuss things and make agreements that meet you both
8) Does their condition fluctuate - are they more able to do things at a certain time of day? Are they not managing as well last week, we all have ‘bad days. If they are feeling more frustrated than usual or more tearful thats okay, dont label it as self pity or feeling sorry for themselves or try and pretend it's all going to magically be okay, instead validate them, let them know it's okay to have bad days
9) Be prepared and think ahead, if the conversation dries up could you watch a movie, play cards, discuss music. Find a way for time together to be comfortable. Maybe think of a hobby you could both try, crafting for example. Get creative in how you spend time together. Maybe they would like to get out of the house for a little while.
10) Show love compassion and empathy. They may yell at you when in pain of frustrated but whatever way you can be there for them is appreciated.
Thank you!!! You summed up my feelings so articulately. I'm going to print this and send to family and friends if you don't mind. I am terminally ill. This was great!!!
hi @mutter3
Thank you for taking the time to read this and if you feel it would help your family and friends please do pass it on to them, I hope it helps them understand what you are going through better, take good care :)
@Rycochet I think everyone should read this. You hit the nail on the head on sooo many issues. Amazing:-)
Awesome post, thanks for sharing, I think it would be really helpful for bunch of people here :)
@Alexlove
Thank you for taking the time to read and show your appreciation for this post. Please feel free to share it with anyone you think may find it useful :)
Take care
This is the best thing I have seen in relation to chronic illness, tank you so much for making this <3 are you a spoonie?
@amazingrea
Really pleased you found this useful. I am a spoonie :)
@Rycochet
This is a brilliant piece of writing, beautifully exhibited and very informative !
Fantastic 😀
@professionalPerspective60
Thank you :)