How am I supposed to feel?

I am 18 years old and have been experiencing symptoms of MS for around 2 years now and I am currently being told by doctors and neurologists that they are 99% sure I have MS…this is probably lead because my older sister also has it.

I have had scans and I am currently waiting to see my neurologist again so that he can give me a definite diagnoses and we can move forward with treatment and such.

My sister lives in Germany and was diagnosed 3 years ago and had excellent treatment. I am aware that I won’t be getting quite as good treatment here In the UK as she won’t when she moves back here in a few weeks. I am just wondering how am I supposed to feel about all of this…it may seem stupid but I don’t know how I should feel.

If I cry I feel selfish, if I don’t I feel heartless and if I’m angry with people because they don’t understand why I’m in pain or tired then that just causes arguments. I’m worried and stressed about what is going to happen and what treatments I will get and how it will affect me later on, am I being silly? I just really don’t know how to feel and this is stressing me which is causing me to become tired and have symptoms more often…I just want to know is it normal to feel like this when its all new?

I would speak to my sister but I don’t want to bother her as she is stressed herself with moving back to England.

But does anyone else have similar feelings? I would appreciate any answers or advice on how to cope?

Thanks in advance

Give yourself a break, Mel!

Look, most of us will have felt the kind of turmoil that you are feeling, although many of us will have had a few more miles on the clock before having to deal with the prospect of having MS.

Give yourself permission to feel the way you feel. Sorry, that’s a truly cringe-making phrase, but that doesn’t stop it being right. There isn’t any ‘right’ way to feel about MS or to deal with it. This applies to the people who’ve got it and to the people who love them. No one really knows what to do for the best, that’s the trouble. So it’s just a matter of you and the people you love muddling along and not being too hard on each other when someone isn’t behaving sensibly or rationally or even very kindly. It’s just hard, this stuff.

You know your sister and I don’t, but please allow me to suggest that you confide in her if you can. She’s been over this ground before, and sometimes people who are weighed down with their own problems find it a relief to engage with someone else’s situation. Don’t just assume that she hadn’t the time or the energy.

Good luck.


Hi Alison,

thank you for your helpful reply it has really made me think my emotions through and think about how i should probably just let them be for a while. And thank you I will speak to my sister and hope she will help me through it.

Thanks again


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