I am not an MSer. I use Shift.ms because my son was diagnosed with RRMS in 2016, age 23, and as his dad said the other day: “We didn’t have a clue”. Not about MS, not about how to help him to handle it, not about how to handle it ourselves. The NHS was great with our son, but there didn’t seem to be any support for parents/partners/children of the newly diagnosed. I rang the MS Society, desperate to talk to someone who knew what it was all about, and they were really kind, but they were not parents.
For a long time our son was not ready to disclose this bombshell, so even if we had felt able to discuss it with family, friends, colleagues, we had to respect his wishes. We didn’t know anyone with MS, although when we finally were able to open up we found that everyone seemed to know someone who did. It was the biggest elephant in every room and nobody else even knew it existed.
You will read on this forum that it can take years to come to terms with diagnosis. Our son moved out into his own rented house within a couple of months, so we had to rely on his weekly visits to deliver his washing (MS didn’t change that!) to keep an eye on him, find out what we could in a casual way that didn’t fool him at all, and ensure that he knew we were there for him, without being intrusive. When they are children, a dose of Calpol, a huge plaster and a cuddle usually do the trick. Now, we had to let him take the lead.
It was almost exactly a year after diagnosis that he turned up with the washing and announced that he had found an organisation called Shift.ms, had applied to go to an event in Prague for young MSers called MS Sessions, was travelling alone and could we take him to the airport. We played it cool, asked lots of questions, showed quiet enthusiasm, put the dates on the calendar and when he left we grinned at each other, high fived, cried – the trip sounded great and a real experience, but what really mattered was that there were people out there who had made him engage with his diagnosis and his new life and would be there for him.
MS Sessions was a turning point. He also went to help at ECTRIMS in Berlin the next year, and took part in the Shift.ms “Hidden” film, ( which got us to our first – only – film premiere, where we got to meet our Shift.ms heroes). I became a moderator for www.Shift.ms and his dad did a mega walk to raise money for Shift.ms.
As a moderator, I read all the posts. Sometimes a parent will post about their child’s diagnosis, or a young person will mention the hard time their parents are having dealing with it. The young person’s privacy is paramount. I know that our son would have been devastated to see himself being discussed on this or any other forum. But I have started to get in touch by message with any parent who posts, or with a young person who raises the issue, just to say that I have been there and they are welcome to get in touch if they are feeling as isolated as we did.
MS is different for everyone, and everyone handles it differently. In the early days we took a trip to a local MS Centre – our son didn’t want to come – and a young man, about our son’s age, approached us. He had heard us talking to the staff and came over to say that he had been diagnosed three years ago, was there for a massage in his lunch break, was house sharing with friends and was planning to move to the seaside, and “It isn’t that bad, having MS, you know”. I will never forget those words. I have hesitated to put it in here in case people think I am playing down what MS is, but honestly, it was the first time since diagnosis that anyone had made me think it might not be the end of the world, and I was so overwhelmed that I just turned and walked away, leaving my husband to thank him.
We are immensely proud of our son, and our doom-laden worst scenario imaginings have been put to one side. He is getting on with his life. Things will change, but that is true of everyone. As the saying goes, “He has MS, MS doesn’t have him.”
Spend that time making yourself as knowledgeable and confident as you can. Do not frantically scrabble about on Google with a search for MS. Use proper MS sites, look on Shift.ms for links that are reputable and useful, make sure the information is up to date. Dealing with MS has changed hugely in the last 20 years. Don’t bombard your son/daughter with information, but have it available. They will have to make some big decisions, so be in a position to help them. Know what treatments are available, from DMTs to hyperbaric chambers. Know about possible life-style hacks – exercise, diet, meditation. Know which questions to ask the neurologist/MS Nurse.
And if you discover Shift.ms earlier than we did, and you get a message from me, feel free to delete it, or delay it, or get back to me.
I am Sharon and one of those people whose forum bio classifies me as "I know somebody with MS", in this case, my son. This Christmas will mark five years since it was first suggested that MS might be diagnosed. His dad and I have learnt so much over those years and are immensely proud of our son. On a lighter note, one of the outcomes has been that his gluten-free, dairy free diet has meant that I have learnt a whole new load of cooking skills!
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