Dealing with people's responses to a new diagnosis of RRMS
(UK) Hi all! First time poster :)
I just got diagnosed with what we think is RRMS - I'm waiting for a contrast MRI and an appointment with the MS specialist consultant at some point in the new year to discuss treatment options and get a better sense of where we're at. Luckily right now my symptoms are very mild with just some residual weird feeling in my face after an episode of numbness in the summer. It also looks like a strange episode I had back in 2009 when my hand went numb for a bit was probably my first attack, but I've had nothing since then apart from on-and-off residual crappiness in that hand/arm (some of which is also RSI/carpal tunnel).
Based on conversation I've had with the diagnosing neuro consultant and the research my partner and I have done my outlook is very good. I'm trying not to tell too many people as I don't think it's relevant, but I am telling a few close family and friends. I'm finding their reactions quite distressing - people react like I've told them I'm going to die next year, mostly because they don't understand what the disease is, or how things have come on in recent years.
It makes me question my own outlook and positivity and makes me not want to tell anybody, but at the same time I feel like I'm constantly lying to the people I care about when they ask how I am and I just say "Oh fine!!"
Anyone else experienced something like this?
Also I'd be keen to chat with people living with RRMS who have busy lives - I'm very active and I run my own business, so I am all ears for positive stories and tips for coping, treatment options, not freaking out with every tiny twinge etc.
Thanks.
Hi and welcome @scribe! The reactions you describe are familiar and I totally agree it’s mostly that people don’t understand the condition is incredibly varied in how it affects people and that actually so much important progress has been made with medication options etc. Like you I didn’t tell many people and 7 years on from my diagnosis I still choose not to tell many people. I also don’t have many visible signs so most people would have no idea when they look at me. And I still tend to say ‘I’m fine’ when people ask how I am (whether they know or not) as I’d rather not get into a long conversation about my fatigue or random sensations. Keep your positivity - it is really important!! I’d be happy to chat with you more, I completed my Masters after my diagnosis and i work full time. My top tip is pacing and not pushing yourself too far...I have been known in the past to overdo it when I’ve been feeling good, because I’m fine right and there’s so much I want to do!...but then I’ve paid the price when my energy levels have crashed and the MS has reminded me it’s still there! It’s a tricky balance but you know your body best, listen to it, take care of it but don’t be ruled by the condition.
Thanks @ss17, it's really good to hear your story and let's chat more in the new year