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How to support a friend with horrible diagnosis

(7 Posts)
macaroonswoon Sat 22-Oct-16 08:45:23

I am looking for some advice on how to support a friend who has recently received a bad diagnosis.

The condition is very painful, progressive and extremely rare. Significant relief of her pain is unlikely. If anything it will just continue to get worse. It sounds like she will become progressively disabled by this. She is understandably devastated.

I'm not sure how to support her. I would normally spring into action (finding answers, seeking specialists etc - I'm a HCP). But she has seen who she needs to see and there is nothing that can be done.

I will obviously help in practical terms as much as possible. But what do I say to her when she is in agonising pain and crying about the life ahead of her? I can't tell her the pain will get better. Can anyone advise on how to help her?

worldsworstchildren Sat 22-Oct-16 08:56:00

Oh that's awful Op. She's lucky to have such a considerate friend in her corner.

I don't have any advice but I'm bumping for you so someone wiser comes along.


macaroonswoon Sat 22-Oct-16 09:01:13

Thank you!

Johnstonbananas Sat 22-Oct-16 09:20:15

I have been in a similar situation macaroon. To be honest there isn't really much you can do.

Listening to their cries is sometimes all they need at that moment.

You could try and find out ways to relieve a bit of pain even if it only works for a few minutes.

Being there for them is the most important bit-staying in contact so that they know they are still loved. Meeting regularly, perhaps at her house if she's in pain that day and you bringing round a DVD or whatever to take their mind off it.

It is a terrible situation for her and it's awful to know that you can't really do anything to help the pain but trust me. Being there is help enough!

Mylittlelights Sat 22-Oct-16 09:23:59

Could you have an internet search for support groups for the diganosis?

Other people with the same may have suggestions for pain relief she has not tried or other coping techniques.

I don't mind doing a bit of research for you if you PM the diganosis.

macaroonswoon Sat 22-Oct-16 13:05:41

Thanks Johnson, I'm sorry you have been in a similar situation.

macaroonswoon Sat 22-Oct-16 13:10:22

Thanks mylittlelights I will definitely do that. So very kind of you. According to the expert she saw her case is highly unusual and hasn't really been seen before so. That's not to say that there won't be a support group she would find helpful though and I will be looking into it. Just waiting to see the clinic letter so I can be completely sure of the diagnosis before PMing you. Not a straightforward one at all sadly.

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