Hi,
I am new to all of this but I came across this website and I guess I’ve created an account as I am in need of support and advice.
My boyfriend who’s 23 years old was recently diagnosed with pre pre MS. He still waiting for more tests to even find out what stage he is at but the NHS is taking so long with his neurological appointment to see the specialist which is causing more stress and anxiety for the both of us and his family. I know some information about MS however, not a lot.
I do not know how to support my boyfriend as I have never been in this situation before, and my mind is just doing 100mph thinking about our future, if we will be able to have kids and live a long life together.
I guess what I’m trying to say is how do you support your partner who has been recently diagnosed with MS at such a young age…
It does test relationships, and it is hard at any age, but perhaps yours in particular. I think the thing for you to remember is that it is not your job to fix anything. We all long to fix things for those we love, but that is often not within our power to do. What we can do. I think, is to listen carefully and to fall in as best we can with what our person seems to want from us. That might mean a listening ear and it might mean acting as if everything is normal. Within all that, you need to think of your own needs. Keep close to your friends and family and listen to what they tell you. You might not always agree with them, but always pay careful attention to the people who know you best and care about your future.
It’s a tough diagnosis at such a young age but the principle is the same at any age. Keep talking and keep listening, don’t bottle things up and that applies to both of you. I was diagnosed in my late 30s and my first reaction was to keep it quiet and not tell anyone. That turned out to be one of my worst life decisions because once it was all out in the open and everyone knew, things became much easier. We decided to carry on as near normal as possible until anything changed with my symptoms then deal with it as necessary. That has been working well ever since.
Best to you both
Hello Shanarican. I am a near 70year old male diagnosed nearly 17 years ago i.e some 30 years older than your boyfriend.
Can I ask some questions? You say your boyfriend has been diagnosed with pre pre MS. I’m not quite sure what that is, can you tell me more?
I was diagnosed with Relapsing Remitting MS after a period of Optic Neuritis ( lost vision in my right eye - but vision did return). Over the years my mobility has declined and I now can’t walk for more than 20 mins or so and there are times when I suffer from periods of MS Fatigue.
My then girlfriend and I later got engaged and then married and by a large, and until this last 12-18 months we have lived a pretty normal - average life. Last year we both got pretty bad Covid - confined to bed for a week or so and it took months to recover. I’m not sure but I think that Covid made my MS worse - might have been coincidence but my symptoms have been worse since.
I suppose that what I’m trying to say is that I know that it’s different for each person but for me MS is a real swine but it’s not the end of my world. My wife already had two teenage daughters before we met but - looking back and setting aside my age) - could I have managed if my wife and I had some children of our own? Yes - for the first 10-12 years my MS didn’t really affect me and wouldn’t have caused any problems in looking after and bringing up children.
How did and has my wife/ girlfriend support me? It probably helps that she was a Nurse and knew about MS but I’m genuinely not quite sure of anything in particular that she did. She attended all meetings with consultants, MS Nurses etc. We talked and as far as possible we continue to live as normal. ( Just as an aside, my wife broke her shoulder late this summer and for a couple of months the person with MS was the one doing all the caring and support, house work etc etc ). Im going to suggest that the best thing for the time being is for the two of you to learn as much as possible about MS and the various treatments ( including some of the current trials on ‘Myelin Repair ‘ which with luck will one day help in overcoming the nerve damage caused by MS).
Yes! The process of diagnosing MS can seem long, frustrating and un settling. You have my sympathy on that.
A longish and perhaps rambling reply to you but I’ve probably failed to answer all your concerns. More than happy to answer any particular questions , worries you might have. Feel free to ask as much as you want.
Hi Alison,
It’s crazy that you’ve mentioned about family and how I should pay attention to everything they are saying.
My family have been making digs to me and have been using my partners health against myself and him which has obviously upset me a lot. I’ve never had a relationship with my parents and have felt very alone since the diagnosis. Whenever I’ve tried to speak to them about my feelings, they don’t take in. They’ve told me to leave my partner, and I know my parents want the best for me. However, they have not supported me through this time. They’ve added more stress onto me with their comments about his health.
I’ve told them that I am happy in this relationship however, realistically all my parents care about is money and status unfortunately.
I must admit, I have lost myself throughout this process however, I am trying to find myself again whilst supporting and being there for my boyfriend.
Hi,
Thank you for your message it really is appreciated.
My boyfriend does talk to me however, it is not all the time I guess it’s because he doesn’t want me to worry. And I do come across as I want to fix everything you can see it and he’s addressed it with me.
We are trying to carry on with life as normal however, because he hasn’t started treatment or not had another appointment it’s just making me worry even more especially because he recently had the flu and it took a toll on his health. I work in mental health which adds extra stress on top of everything especially because I’m not happy in my job.
I guess what I’m saying his how do you act ‘normal’ he is taking it day by day however, being the only one that has a job is stressful and it sometimes gets too much as I am only 23. I feel like a 30 year old mum with kids as I’ve taken on a lot of responsibilities in such a short space of time. I’m not really doing anything that a 23 year old should be doing.
Hi Hank,
Thank you for your message I read it just now and it has eased my mind this morning whilst at work.
Pre pre MS is early stages of MS, the neurologist said they wouldn’t usually diagnose anyone at this stage however, he said that my partners brain scan shows signs of MS. However, the actual neurologist specialist that we need to see to have more tests etc is taking ages with his appointment. We had an appointment 2 weeks ago with her however, as soon as we got there they cancelled his appointment. And of course this is causing more stress and anxiety for the both of us!.
It’s nice to see that you and your wife have been able to live your together as a couple, that was my biggest worries!.
My partner has not been able to work since June this year, and currently it’s just me working which has added some extra stress on top however, we are surviving which is good enough right now.
I do want to learn more about MS which is why I’ve joined multiple support groups. I find it hard to support my boyfriend as I don’t really know what to say or do which will help make him feel better.
My boyfriend doesn’t always open up to me, and I know he is currently struggling a lot right now due to him doing the same thing everyday. As he hasn’t started treatment he’s scared to go out as he thinks of the worse.
It’s really not nice seeing him like this, we were best friends at first and seeing him then to how he is now is very upsetting
They probably do want the best for you, just as you say. To be fair, they they have reason to fear for your future. Life’s hard enough (they might be thinking) without volunteering for trouble. They’re not doing a great job of making their point, by the sound of it - quite the reverse - but try not to lose sight of where their ill-chosen words are coming from. I’m not saying they’re completely right, just that (to be brutally honest) they’re not completely wrong either, so do try to give them the benefit of the doubt.
MS and flu are a bad combination, having a temperature always floors me completely and takes a long time to recover from. Likewise Covid so I get every vaccination going!
Anyway, you are having to deal with issues that most people have at some point. Unhappy at work, parent problems, new relationship etc and now a life changing condition has been thrown into the mix. And some stranger on a message board tells you to act normal. As if!! Perhaps what I should have said is try and take it a step at a time and not try and deal with it everything at once. Keeping stress as low as possible will help you both. Take time out to treat yourselves, and while the MS is quiet make the most of it. You’re still in the very early days, time really does make a difference and helps.
All the best
Hi there.
Probably because I’ve been thinking about how our lives would have been if I had been diagnosed at such a young age as your partner, your story has really touched me and I feel for both you and your boyfriend. I’m trying to think how I can best help both of you. So, in no particular order and with apologies if I say anything clumsy or which offends you.
I’ve been trying to imagine how I would have responded if, at your age, a girlfriend of mine had been diagnosed with MS. To be honest I don’t think I would have done anything like as well as yourself - you have my respect and admiration for that. I’ve also been thinking about how I would have reacted to being told that I have MS when I was the same age as your boyfriend/ partner. Unfortunately, I knew then what MS could do. My Aunt had it and in those days there were no Disease Modifying Treatments and she began to suffer badly so I think that if I had been told I have MS in my twenties I would have crumbled and broken down. Treatments these days are making a massive difference but even so, MS is a cruel disease, full of uncertainty and fears of what might come. So, I’m thinking that your partner as a young man at just 27 , must be in some turmoil. I know that I went through a sort of period of ‘ grieving’ . Until the diagnosis at age 53 I had an image of myself, a self identity as a fit, active , relatively successful , relatively confident, relatively attractive Man and a subconscious positive feeling that I had something to offer, that a woman could be happy with me and that my then girlfriend ( now wife) and I would have a happy life together. When I was diagnosed all those positive feelings and ‘identities’ just crumbled to dust, blown away in the wind. Suddenly I lost a large part of my self identity, suddenly the future looked bleak and suddenly it seemed to me that I was just going to be a drain on my girlfriend- and had little or nothing to offer her. So, I can well imagine that your partner might be experiencing similar things. It is very hard , especially if a man has any preconceptions about how he should be the ‘strong’ one, able to provide and support etc. If your partner is anything like that then yes, I can imagine how tough it must be to suddenly realise at a young age that he could well turn out to be the one in need of serious support and with little to offer. He has my greatest of sympathies!
There is an awful lot to ‘process’ after a diagnosis of MS and maybe your partner just needs time to work through the possibly dire consequences of an MS diagnosis. I’m a great believer in counselling- do you think that when the time is right your partner might take up some counselling sessions?
Also, if you think it would be in anyway helpful then I would be very happy to share my story and experience with him. Everyone’s experience is different but MS isn’t necessarily the fast track to life in a wheelchair that it used to be and a happy life is possible!
Waiting for a full diagnosis is a truly agonising period and similarly when I got the confirmed diagnosis I found everything was a bit overwhelming. I’ve asked my wife about how she felt she supported me then ( and later) and basically it came down to letting me know that she was there for me. Her response to your general question about how best to support your boyfriend was along the lines of ‘don’t try to jolly him along too much’ ( that comment was probably borne out of her experience with me 
).
In the early years after my diagnosis I found that One of the ‘challenges’ of the having MS was living with uncertainty and the fear of what might happen. Felt a bit like living on a cliff edge or a dark cave - take the wrong turn and I could be in serious trouble. Somehow or another and I guess that as time went by and nothing terrible happened, that serious anxiety lifted. Anxiety and depression tend to be more frequent in people with MS so that might be something to watch out for. I don’t think anyone knows why there is a higher frequency- there are some suggestions that the MS ( nerve damage) might have direct effect on brain chemistry or it could be simply that living with MS is enough to depress anyone.
I did experience depression and In my case, perhaps as a precaution, ( see below on MS and stress , anxiety etc) I’ve continued to take ‘Citalopram’ - my regime is 20 mg one day, 10 the next but to be honest, I sometimes forget.
Can I suggest as well that as others have said ‘ take care of yourself as well - mentally and emotionally’. I’m perhaps lucky that so far MS hasn’t had much of a negative impact on the lives of myself or my wife but I’m very aware that I have been lucky in my experience of MS. Prior to MS I had a good life, enjoyable job and even now, my life is pretty good and enjoyable. For others, however MS can be seriously life changing. So yes, do think about how your boyfriends MS might affect your future , the demands it might make on you, living with uncertainty and what it might all mean for your hopes and dreams. I hate to say this as well, but MS tends to run in families. Which doesnt mean that it’s inevitable that children of people with MS will also develop it but in some way or another, certain combinations of genes can make descendants of people with MS more susceptible to developing it. On a more positive note - MS treatments are improving and these days people with MS fare much, much better than the days when there were no treatments and with luck, treatments that can fully prevent and reverse nerve damage aren’t too far away. A lot for both of you to consider!
You mention that your boyfriend- partner has not been able to work since June and that he is scared to go out? Are the two related? On the one hand I can understand his fear of catching Covid or similar which can exacerbate MS. I tend to be cautious about getting Covid or the Winter Vomiting bug that’s around but i do go out e.g for meals, cinema etc while avoiding peak , busy times. Think I will avoid meals out etc during the busy Christmas , office meals out period. Other than catching some relatively serious infection there is no need for your partner to feel worried about going out.
Just jumping ahead a little but also referring to my reference above to MS and stress, anxiety. Early in my days of MS i came across a book ‘Overcoming MS’ by Professor George Jellinek - a professor of medicine at an Australian University who has MS himself. The title is a bit misleading - there is no actual ‘overcoming’ of MS but he makes suggestions on how best to help yourself in reducing the development and impact of MS. The suggestions cover diet, exercise, and meditation- relaxation. I found the book ( and subsequent website) very useful. If nothing else they provided a feeling that i wasnt simply in the hands of the MS and the medical profession and treatments and that i could do things to help myself. There are no great surprises - basically follow a healthy, Mediterranean type diet with low intake of saturated fats - high intake of unsaturates , exercise to support a healthy body and brain physiology, meditate as part of a regime of relaxation and reducing stress. Stress is definitely bad ! Basically anything that inflames mind, body and immune system is best avoided! I tend to use mindfulness but I’m not always good at keeping to a routine. Mindfulness sessions are probably good for a mind that racing at 100 mph as well
The other recommendation is on maintaining a good level of Vitamin D. The suggestion is some sunbathing which probably works well in Australia but less so where i am on the west and wet cloudy side of central Scotland ! So, i take Vitamin D supplements. I see that recommendations on diet, exercise and Vitamin D now appear on NHS , MS Society and similar sites.
I hope that some of my rambling thoughts are of use to you and as before I would be very happy to answer any questions you might have .
My best wishes to both of you for happy lives