@erinlidia 

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erinlidia

Supporting newly diagnosed boyfriend

Hi everyone :) I'm here to ask how to support someone I love more than anything. Sorry if this is long, I just want to set the stage. My boyfriend of 8 years and I moved in together a few weeks ago. It's been an awesome adventure so far, and we're so excited about the future. A few months ago, he started experiencing symptoms - significant numbness, muscle weakness, difficulty walking and using his left hand, light and heat sensitivity, etc. These symptoms eventually subsided. He saw a neurologist, got several MRIs and other tests, and went for the follow-up appointment two days ago. The MRIs found lesions and inflammation on his upper spinal cord and in his brain, some older, some newer, some currently active. He was diagnosed with relapsing-remitting MS, and prescribed Tecfidera. He is 27 years old. It's a huge shock, especially as we're just starting our new life together, and wondering what this means for the future. The medication is so expensive, there's no way we can afford it, we'll have to find some way to subsidize it - we live in Canada. I am very driven to research everything there is to know about MS, and to talk to him all night, and be extremely supportive, and plan for our shared future. I suppose this is my coping style. He is very driven to distract himself with anything and everything. He says he 'feels nothing' and doesn't want to talk about it. He's not in denial. He says 'it is what it is' and is willing to start treatment. But I think he's in shock, and understandably so. I don't want to force him to talk about it, or give unsolicited research-based advice, or treat him like a 'patient.' His family is already asking tons of questions and being very overprotective, and it's obvious he doesn't like that. Do any of you have advice on supporting someone newly diagnosed, especially if your loved one is a young man? Or, are you a young man with MS? What are some ways I can be supportive in the aftermath of the diagnosis and throughout the course of our lives now that MS has entered the picture? Any comments, feedback, suggestions or advice is hugely appreciated. I am absolutely committed to being the best support I can be, and tackling MS together as a team. Thank you! ~ Erin
@naomih

Hi. When was diagnosed I told everyone pretty much what your boyfriend has said. I just felt that by over talking or analyzing with others made it an issue. I can't plan for the future because that brings fear. Just be there if he needs it and don't take it to heart he probably just wants life to be like it was before. Talking can be overrated anyway ?

@Stumbler

@erinlidia , first things first, MS is now a manageable condition. MS is one of life's taboos, no-one speaks about it, until it comes to call. It is not a one way express ticket to a wheelchair! But, it can be a bit undermining for us blokes. It tries to reduce our masculinity. And, then there is the fear of the unknown. but, it's really good of you to come here to support your partner. He's presently starting on a bit of a journey, which goes through defined emotional phases :- 1. Shock and Denial 2. Pain and Guilt 3. Anger and Bargaining 4. Depression, reflection, loneliness 5. The upward turn 6. Reconstruction and working through 7. Acceptance and hope It will probably be easy to see where he is at the moment. Give him space to get his head around this diagnosis, but be there to support him and talk about it, when he wants to. Try and help him find a balance in his life, trying to avoid extremes. Have a healthy, balanced diet. And, see if you can help banish stress from his life. I know, it's not a good time to avoid stress. But, stress is a major antagoniser of MS and does nothing constructive. There's some reading material here, http://www.mstrust.org.uk/shop/products.jsp?catid=56 , which is from a good source, which may help you. But, let your partner seek this knowledge at his own speed, rather than you push it in his direction. There's a lot of experience on this forum, so we can help support you, to support your partner.

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