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Telling someone I have MS

Hello - sorry for anon. I have to face something that is very, very difficult for me - a very close relative doesn’t know I have MS. My neurologist has told me I need to start taking fingolimod as Avonex isn’t helping me. I’m so scared. Horrible looking side effects. This person not knowing and me starting a drug with potentially very serious side effects feels so wrong - I feel I’ve left it too long. Now, this person not knowing is almost worse for me than having MS. I was trying to protect them but have ended up hurting myself and will hurt them even more when I tell them. Circumstances meant it was too hard to do when I was diagnosed four years ago. I couldn’t deal with it myself. If I tell this person it will impact the happiness of other people in family. Has anyone else been in this position and what did you do? I figure I can’t be the only one this has happened to… I don’t know what to do and I feel terrible about it, on top of having had a relapse, and having to decide whether the risk of becoming seriously disabled from MS is greater than the risks of getting PML or skin cancer by taking fingolimod. How did life get so ridiculously complicated?

Firstly I’d be on that drug without hesitation. Don’t underestimate MS, this sounds harsh but it can floor you overnight and you have the chance to help stop that happening. So that’s that decision taken care of!!

As regards telling the other person, do you think maybe you’ve built it up in your head to be a huge problem that in reality it isn’t? This is a close relative and the fact that you’re so worried about it implies they care very much for you in which case they will care for you whatever you tell them.

I had a similar situation and had left it a couple of years in an attempt to protect them but in fact, in my case, I was wrong to do that. All I had achieved in that time was building it up in my head into something it was not and when I hold them, they had nothing but love and support for me. It’s a huge thing for you, but will it really have such a huge impact on everyone else’s happiness? They’ll be concerned about you but if they’re happy now, that won’t change.

Good luck with whatever you do.

I do not actually think you need an ‘excuse’, but if you think you do, your own words here provide it.

Personally, when I was newly dx (and for some time afterwards) I could not tell anyone I had MS without dissolving into floods of tears. As you say - I couldn’t deal with it myself. Time lends some perspective, or it can do. With luck, you will be much better equipped to deal with the emotional fallout now than you would have been a few years ago. It is a pity if you feel bounced by circumstances into telling now rather than some other time. Another way of looking at it is perhaps to think that time and experience have now given you the strength and calm to do so at a time of your choosing.

One more thought - some people have a way of making us feel that things are always our fault and are good at putting us in the wrong. If the person you need to tell is inclined to do this, please let that be water off a duck’s back. You are the one with MS to deal with, and you must arm yourself emotionally against anyone - however close - who is temperamentally inclined to let his/her own concerns take centre stage and discount your concerns. Apologies if this is not at all the case here, but I am sure that you know what I mean. Do remember that none of this is your fault.

Alison

I am sure they will be much more understanding than you think. I tried to fob my nearest and dearest off with excuses when I had my first symptoms and was waiting for a brain scan because there was already serious illness in the family and I didn’t think I could dump any more stress on them. When I was admitted to hospital and had to tell the truth they told me they had known I was fibbing as they know me too well anyway and they were relieved (and of course just concerned out of love for me) when I told them the truth.

I suspect you will find that is the case for you too. Do you really think that this person hasn’t noticed there is something going on with you for four years (and not noticed the recent relapse) and wondered when you are going to tell them what is going on? They might in fact be relieved that it isn’t anything life threatening as it could be a whole lot worse really. Sometimes their imaginations can be just as bad (or worse) than our own and they need to talk about it with us so we are in this rubbish situation together.

Btw, I have to switch drugs too as Rebif isn’t working for me. I am desperate to start on fingolimod but have to wait to have a heart scan next week then the cardiologist will decide. (Btw, haven’t told dad about the heart scan as mum died during her third heart attack so he doesn’t need to know about this one little thing! Will tell him afterwards as they have assured me there was nothing major on the ECG.) Fingers crossed I can go ahead… I have already run out of Rebif and don’t like having nothing against the MS and if not fingolimod I have to choose something else. Nothing else looked so attractive.

Good luck - I’m sure the telling won’t be as bad as you thought.

Tracey xx

Hi, you`ve had some brill advice.

Each one is full of good ideas of how to tell that special person.

Good luck for when you do tell them…but luck shouldnt really come into it. You`ll be testing their loyalty to you, but it sounds like you need them to know.

Whatever happens, we`ll be here for you, offering our support.

luv Pollx