My daughter was diagnosed in July - she’s only 18 and she has always been someone who worries too much about death and illness. Now with an MS diagnosis, she is freaking out all the time. She will often sleep in my room when she gets scared at night, and she’s becomg very needy and wants me around all the time. This is fine - I want to support and encourage her - but I don’t know what to say or do for the best. She can’t bear to see someone in a wheelchair as she thinks that will be her. She even hates going to Marks and Spencers as she finds the name - M&S Foods - too painful!! I try to talk to her about the fact that she has a full life ahead of her, and she needs to make the most of her life rather that waste it worrying - but she knows that for some pple with MS, life can be quite difficult, and she feels that could well be her.
Her whole life is taken over by her fear of MS, which is perfectly understandable - but how do I help her move on? She has been put on anti-depressants, but they haven’t kicked in yet (she’s been on them for nearly a month) and she’s been referred to a CBT counsellor, but they have no vacancies yet.
So - what can I do to help her? Any ideas would be so welcome!
The MSS runs events for young people with MS - perhaps she would go to one of them? Meet other people with MS who are her age / near her age?
Could you get her to read more about MS so it is less mysterious and threatening?
Would she speak to someone on the MSS helpline? (0808 800 8000)
Do you have an MS Therapy Centre near you? Some of them have counsellors and they will be much more familiar with MS. Plus, going there would be a chance to meet other people with MS.
You’ll notice that none of these suggestions involve you doing anything (apart from going along to some perhaps) - and that’s going to be the crux of the matter I fear: she wants you to make it all better; unfortunately you can’t. All you can really offer are cuddles and a sympathetic ear. So, I guess the best emotional support you can do in the long-term is to encourage her to find other sources of support.
I do suggest that you go back to the GP’s about the anti-depressants. They would normally start to work within 4 weeks, so it might be that your daughter needs a higher dose or a different type all together.
I am a mum of two and can understand this is very difficult for you also.
Please don’t rush your daughter. She needs to do this in her own time. Her diagnosis is very new and her emotions will be all over the place at the moment. Especially as she is so young.
When i got my diagnosis i was so mixed up i didn’t even know what day of the week it was. It took me months and months to even start to get my head round what my diagnosis would mean. I stuck my head in the sand and hoped it would go away. I could not read anything about my condition and i couldn’t even watch anything medical on the tv.
She will be scared of the future. MS does not necessarily mean wheelchair but she doesn’t believe that or understand that life can be good regardless of ms.
Let her do this at her own pace - one step at a time.
The medication and CBT is what she needs to get through this at the moment. Hopefully it will help her but if not she needs to go back to gp to try something else.
I think your daughter is very lucky to have such a supportive mum. You are doing everything you can do at the moment. Just being there and listening to her talk this through without judgement is more helpful than you will realise. Continue to support her and each day will start to get a little easier for her but it may take a while.
Hi, thank you for those replies. Going to groups or signing up to a forum would definitely be my response if it were me, but for her it is too scary. She is terrified of reading something that will really scare her (her biggest fear, after a wheelchair, is of needing nappies - this really distresses her). She’s telling her friends she has ME (to account for her tiredness) and one said “Well, at least it isn’t MS - that just makes your whole body collapse.” That wasn’t a good day! So yes, I think that information is important, but she doesn’t seem ready for that.
You’re right that she wants me to make it all right for her, and obviously I can’t do that. But how to ease her distress? Is it better if I stay upbeat and encouraging, or is that just dismissing her fears?
It is so tough seeing a child face this, and I have to be strong for her, when actually all I want to do is scream and cry!
I will get her to go back to the GP to talk about her meds not yet working…
I’m really sorry, but I think you need to MAKE her face her fears. Letting her hide from reality is, in her case, really not helpful!
How will she learn that most MSers do not need wheelchairs and nappies if she doesn’t pluck up the courage to ask / read about it?
Her imagination is FAR scarier than the truth.
Sometimes we have to be cruel to be kind. If I were you, I would stop being so strong for her - if she is allowed to wallow in her misery and misconceptions, she will never cope with normal life, never mind whatever MS brings her.
I reacted like your daughter. There is no way i would have come on here to read what might happen to me. I was petrified. After time i started to read the odd post. I now come on here to see if i can help others. She will do it at her own pace.
You say your response would be to sign up to a forum/join groups but i would just like to say “how do you know how you would react?”. You have not been in this situation. It is earth shattering news to get this diagnosis and everyone reacts in a different way! Same as we react differently to a berievement. There is no right or wrong way to react as long as she comes through in the end even if she needs some help.
Sorry if that sounds harsh but i feel i need to stand up for her.
I’m remembering old posts that were made before Vicky’s daughter was diagnosed. She’s suffered from what sounds like quite debilitating anxiety for a very long time. Given that, I don’t think that she’ll get to grips with her diagnosis without intervention. And I have a sneaky suspicion that the softly softly approach will not be enough. Could be wrong of course
Was not aware of previous posts. It just bought back my response to my diagnosis - hide under my duvet and hope everyone would just leave me alone until i was ready to face it. And that was quite a while! lol!!
Hi, I was diagnosed with cancer when I was in my early 20’s and I am now 48! At first I wanted to hide in a cuboard and never come out. Then my Mum go me a book called something like holistic approach to cancer. I read about diet, lifestyle exercise etc. I became so interested in eating a healthy diet, exercise and homeopathy etc. Within a short while I had a focus to help myself get better and I started to feel more positive. There are many great positive books out there - one in particular I think is called ‘Healing MS Naturally’ by Judy Graham. Also, I am a strong believer that there will be a cure very soon.
With regard to groups just be careful because it usually tends to be the worst affected people go to them for support. I went to a cancer group and never went back because I was listening to death fears, sickness, traumas with treatments etc. No positive vibes at all!!
You will tend to find that those people with MS that are living well etc are not attending groups.
I have not been diagnosed with MS but a I have a neuro problem related to my cancer treatments which gives me symtoms similar to MS. I have opted for the MS diet, omega 3’s and vitamin D3 to help strengthen my nervous system. On doing so I feel more positive that I am doing something to improve my health.
I also go to yoga which makes me feel so positive and it strengthens the muscles in the body big time. At the end of the class there is meditation and we say into ourselves
Hi, I was diagnosed with cancer when I was in my early 20’s and I am now 48! At first I wanted to hide in a cuboard and never come out. Then my Mum go me a book called something like holistic approach to cancer. I read about diet, lifestyle exercise etc. I became so interested in eating a healthy diet, exercise and homeopathy etc. Within a short while I had a focus to help myself get better and I started to feel more positive. There are many great positive books out there - one in particular I think is called ‘Healing MS Naturally’ by Judy Graham. Also, I am a strong believer that there will be a cure very soon.
With regard to groups just be careful because it usually tends to be the worst affected people go to them for support. I went to a cancer group and never went back because I was listening to death fears, sickness, traumas with treatments etc. No positive vibes at all!!
You will tend to find that those people with MS that are living well etc are not attending groups.
I have not been diagnosed with MS but a I have a neuro problem related to my cancer treatments which gives me symtoms similar to MS. I have opted for the MS diet, omega 3’s and vitamin D3 to help strengthen my nervous system. On doing so I feel more positive that I am doing something to improve my health.
I also go to yoga which makes me feel so positive and it strengthens the muscles in the body big time. At the end of the class there is meditation and we say into ourselves
Hi,
Thanks for your thoughts. I agree that she needs to face up to the realities of MS, but sadly she has had some brutal realities to contend with anyway. My husband’s previous partner had PPMS, and E knows this, and that she is no longer alive as a result. Our next door neighbour’s daughter also has PPMS and is really very very ill. So while I try to offer a more balanced view, E is terrified because her experience is of pple who really struggle. I show her a more balanced picture, but she freaks out.
I tell myself that it’s early days for her, and she has to go through a grieving process - but I don’t want to push her beyond anything she can cope with in case I force her too far.
It is very very difficult knowing what to do for the best.
To show her a more balanced picture please tell her my story.
My mom had ppms and as you have said the details do not need explaining. I was diagnosed with RRMS this year after two yrs of back to back relapses.
I started on copaxone on May and have had no futher relapses,and I in no way mirror my moms journey.
It may be a life changing diagnosis,but it is not the end of her life.
At such a young age I can understand her freaking,I dont know how badly her symptoms are affecting her at the moment but as time goes on she will learn to see that she hasnt changed overnight into her image of wheelchair dependant and needing care,and that she is still continuing life as before but with a dx that at least explains the weird stuff that had been going on.
Are DMD something that have been suggested?
As others have said it is a journey only she can take but knowing you are their to support her is so important.
Hi Vicky I’m so sorry for what your daughter (and you) are going through atm. It is so hard for her when she i’s only 18. You have had some great advice from others here but I just wanted to refer you to George (ggood) on here. He was dx’d with PPMS when he was 23. He is now 63, so has lived with his MS for 40 years. Perhaps it would be worth having a chat with him and then telling your daughter about him. It would maybe show her that there is life after MS. Hope things improve for you both. Teresa xx
Thank you for your support and suggestions - I appreciate it. I’m going to get her to come with me to Qi Gong as I think it will help her find a way to be calm and relaxed. (She does tend to be anxious, it’s true). I think she needs to be a bit emotionally stronger before she can start to accept the diagnosis and its possible implications, and Qi Gong and the CBT should both help with that (though she has to wait another 4 wks before the CBT can start, which is a shame…) The trouble is, she knows that the course of the illness is unpredictable, so when she hears of pple who don’t have any real problems with it (including our GP’s 83 yr old mother) she knows that some pple really suffer, and she’s scared she’ll be one of them.
It is frustrating and heartbreaking at the same time.
Thank you for your support and suggestions - I appreciate it. I’m going to get her to come with me to Qi Gong as I think it will help her find a way to be calm and relaxed. (She does tend to be anxious, it’s true). I think she needs to be a bit emotionally stronger before she can start to accept the diagnosis and its possible implications, and Qi Gong and the CBT should both help with that (though she has to wait another 4 wks before the CBT can start, which is a shame…) The trouble is, she knows that the course of the illness is unpredictable, so when she hears of pple who don’t have any real problems with it (including our GP’s 83 yr old mother) she knows that some pple really suffer, and she’s scared she’ll be one of them.
It is frustrating and heartbreaking at the same time.
Oh dear! I can well understand your daughter`s morbid fear of MS. This will be even more highlighted with having a neighbour and an ex family member with it, in the worst types.
When I first heard the words MS and that they could be the reason for my problems, I freaked out. I knew no-one with MS and I`d imagined it was a killer…every time.
Well of course, i`ve learned it isnt necessarily like that. Yes, there are some people who have it in such an extreme way that they may meet an early demise.This is quite rare, I am glad to say.
Your daughter needs time, reassurance and love…lots of love. Us mums are supposed to take our childrens pain away. Cuddled up in our arms, nothing bad can touch them. Thats the thing we learn as very young children.
Give the meds time to work and the counselling will come eventually. What about going down the private route for the latter, if you can afford it?
I know, Poll, you’re right,. She just wants to be cuddled up - and I can’t make it better. It’s true what they say - that if I could have it instead of her, I would, in a heartbeat. I keep trying to dripfeed positive messages and hope that they get through…
