Hi my Son has just been told he has MS although needs a further MRI with contrast. He is 35 married with 2 little ones, I wondered if any other parents had found ways to manage the rage and grief while putting on a strong positive face for your family.
Hello Cathymum. I hope this is of some help. I’m a step Dad and my two stepdaughters were in their early teens when I was diagnosed. My wife was with me when I was diagnosed in my early 50s and it was with her that I did all my grieving. She too grieved for a perceived loss of a happy bright future together. I don’t think I ‘raged much’ but rather grieved a lot and also threw myself in to learning as much as I could about MS and treatments etc.
‘Rage’ is generally not good for MS ( similarly stress, anger etc) and what I did was listen to soothing music and then later took up mindfulness and meditation.
If it provides any slight optimism to your son then my diagnosis was 17 years ago. I enjoy life, can still walk for 20 minutes or so a a good pace ( just in from clearing the gutters on our bungalow). I’m on a weekly injection of Avonex and I think that some of the more recent treatments are more effective than those available when I was diagnosed.
Very happy to answer any questions that your or your son might have
Best wishes
As someone on the opposite end of this. I was about 10 or 11 when my Mum was diagnosed. Can I suggest not trying to mask too much from the kids. Absolutely don’t scare them, be hysterical etc if that’s what you need try to find a quiet place to let the frustrations go but really try to be open with them in an age appropriate manner. My parents took the approach of keeping everything secret. I have no recollection of ever being told Mum was ill but I do recall the overwhelming sense of relief when I overheard her tell her sister that MS wasn’t going to kill her any time soon so I obviously knew deep down that something was wrong and was under the impression my Mum was dying. Growing up in a family where Mums health wasn’t spoken about and all appointments, diagnosis, treatment were kept secret has left lasting scars that in my 40’s I’m just starting to unravel. It is also causing issues now as Mums health deteriorates 30 years on that having been kept out of all conversations it is very hard to know what has been suggested and tried and what could be an actual option to support the path forward. Kids are more switched on to their surroundings than people often realise so try to involve them. Take care and wish you all the best.
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