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MS - how to open lines of communication and understand the fear of the unknown

(1 Post)
ChocolateBiscuitCake Mon 15-Dec-14 20:04:28

SIL is staying with us over Christmas.

She was diagnosed with MS about 21 months ago and it is clear that she has been suffering a lot longer - in the 12 years I have known her, she has become much less active (regular hill walking to nothing, playing tennis & hockey to nothing, always tired/sleeps in the day). Her mobility has deteriorated - when very tired, we have seen her struggle up stairs. She only received the diagnosis after she lost her sight which forced her to go to the doctor.

She now takes injectable drugs once a week which knock her for 6 (flu-like symptoms for 24 hours).

She is single and lives alone (mid-40's). She works full time in a very demanding job and seems unwilling to reduce her hours or delegate her workload (which her boss is open to).

Other than this info, she has told her parents and siblings nothing more about her MS. No one knows the type of MS, the doctors outlook, the severity etc. She goes to specialist appointments alone (at her request). I understand she has an MS nurse.

As you can imagine, my PIL and DH and going out of their mind with worry. She will not discuss anything with them. She lives 2 hours away from family and won't phone PIL or DH with any regularity (can go for months without contact) and has stopped contacting other family members who she was once close to.

With regards to distance, she lives alone, has no real "friends" (she has a small handful of very close friends but they have families of their own). Even before the MS diagnosis, she doesn't socialise where she lives, except maybe a brief 'hello' to a neighbour. So essentially she exists by getting up, going to work, coming home, going to bed. At the weekend, she sleeps all day.

My MIL visits with (a bit too) much regularity (as she is so worried, and of course in the dark) and tells me that her flat is messy, the fridge is empty.

My question is twofold:

1) I think I am right to assume there there are some depression/mental health issues, which are common with MS, apparently. But I am a very black/white person, so I wondered whether anyone could try and explain how she might be feeling so I can see her view point as to why she won't talk to family? I completely understand how she must be terrified and upset about the diagnosis and fearful of the unknown, but I can't get my head around why she won't sit down and tell her family what is happening. They love her are devastated by the diagnosis and deserve to know too? For nearly two years they have been in the dark. If someone else in her family had cancer, for example, she would want to know about diagnosis, prognosis, treatment etc, surely?

2) We have offered to help her financially so that she can work part-time. I think work is probably important as this gives her a huge amount of identity and gets her out of the house. However, from what I have understood, to minimise the progression of MS, it is important to keep life as stress free as possible and look after your physical health. She has refused all offers (I realise this may initially be a pride thing) but won't talk to us. I have written her a letter expressing how much we love her and that should she ever want to talk, we are hear to listen. She replied that kindness kills her. Clearly the emotion is still very raw, but more concerningly (from my naive viewpoint) she doesn't seem willing to help herself. Is there anything that we are missing that we can do? Why does she not want to look after herself so that she can live a more fulfilling life than she does currently? I don't mean that to sound mean, but I simply don't understand and would love some experienced guidance or explanation.

So sorry for the long ramble, but she is with us for 3 days at Christmas and would love to have a clearer understanding of these issues should a moment arise where we might be able to open some lines of communication.

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