By Dr Sally Shaw
It is often said that the first three months following a diagnosis of MS are the toughest. I disagree. The psychological challenges of incorporating this diagnosis into your sense of self last longer than that. Of course they do. This diagnosis is big news to process. Some normalcy might start creeping back into your life after about a year... But it is very common to go a full 12 months with thoughts about MS, and the uncertainty of the whole thing, very close to the surface.
And this is just the start of the rollercoaster of emotions that can often accompany MS, not only at the time of diagnosis, but right through a life lived with MS. The emotional rollercoaster that everyone in your life acknowledges for the first little bit, and then some might be quick to forget because 'you look so good' or if you don't look so good, they think you must be used to having MS by now, and they think you've reached the magical (or mythical? Maybe that's a discussion for another time...) 'acceptance' stage.
But they didn't get the memo. The memo that states that this news will pervade every fibre of who you thought you were before MS. The whole 'nothing is certain anymore', and 'why do I feel as though I don't even know who I am now?' memos. Yep. It is weird. It is disconcerting. And it feels wrong because most of your symptoms have disappeared, you're on the right drugs for you, you're happy with your neurologist, you're thinking everything is actually pretty good considering... Yet you just feel a bit unsure of what is up and down now. Who are you?
And where are the casseroles? Where is the cooked chook? Can't you see I'm grieving here?! If you were lucky enough to get one or two baked goods from friends or family at the time of your diagnosis... Why haven't you got another one recently? Chronic Illness people. CHRONIC. It's not over after three months... Where is my lasagne?!
Ok, so let's talk about friends and family. And a common, entirely understandable, but yet still strangely unexpected, part of the rollercoaster. It occurs, often a number of years down the track, when your friends and family have accepted your diagnosis of MS, and you think you've 'accepted' your diagnosis.... And then something happens. A relapse. Or your existing symptoms get worse. And you are crying, angry, frustrated, depressed or well, going out of your mind losing the plot... And no one gets it. Your friends and family were expecting that MS might get worse: 'It's a 'progressive' disease isn't it? She knew she had MS, and that it might get worse... Why is she so upset about it again?'.
You were diagnosed with MS ages ago. Your friends and family were shocked. Just like you. Then they incorporated this new information about you into their idea of who you are and what may lie ahead for you. It's not that they are expecting something bad to happen, but they thought it might, and they are not that shocked when that day came.
You... Not so much. You probably worked really hard to incorporate some part of the label of MS into your identity, and the reality of whatever symptoms you had going on at diagnosis into your day to day routine. Most people with MS work hard to come to terms with how MS impacts their life. They size up the goal posts and they work around any challenges MS presents. They get used to incorporating their new limitations into their expectations of themselves. When they work so hard, and nail it, they feel a sense of calm and reassurance that they can manage MS well. But when new symptoms present, the goal posts change. It is almost unfathomable, to have to go through the process again. It is a whole new grief. It is dealing with it all over again. And if symptoms are invisible, friends and family find it even harder to understand the emotional rollercoaster they see you on. The person with MS themselves is often also shocked that they are feeling upset about the change in symptoms: 'I've had MS for years, I don't know why I'm not coping all of a sudden'.
Top tips for managing the emotional rollercoaster? Talk about it (of course!). With someone who gets it. Friends and family can be super supportive, but they may also try to make you feel better by encouraging you to 'look on the bright side' or 'feel more positive'. The benefits of talking to someone else with MS can be enormous. They may be able to readily identify with the unexpected grief that comes with a new symptom, or change in situation, and support you with acknowledgement, validation, and empathy.
Have a chat to your GP. Let them know if your bad days are outweighing your good, if you are feeling less equipped to 'bounce' after a rough patch, or if feeling flat is lasting more than a few days.
Consider seeing a psychologist - they can help you prepare for ups and downs, normalise what you are going through (it is a big deal!), increase effective communication with those around you, and negotiate the emotional rollercoaster that you can find yourself on (often unexpectedly) when you are living with MS.