So your friend or loved one has been diagnosed with Multiple Sclerosis. What the heck do you do now? When I think back at my time of diagnosis, I was lucky to have great support from friends and family. It helped that I was really open about what was happening, so my friends went through it all with me. However, not all the support, although meant well, was appreciated.
To help you support your friend, I have decided to compile a little list of what to do; and what absolutely not to do.
Acceptance
To reach acceptance of our new world with Multiple Sclerosis requires a similar process to grieving. We mourn our old lives, especially in the beginning when treatment hasn’t kicked in fully and our symptoms are a little bit all over the place. Mostly we need time to adjust to our new worlds. It would be good if you could give us this time without judgment, and eventually embrace the new version of ourselves. We might come out the other side with a few scrapes, but we will learn to find ourselves again, and soon enough we can laugh about the same stuff that we always laughed about.
Support
When we are ready to talk about all the turmoil that has come with our new diagnosis, please be supportive. Please do not think that we are lazy, or not trying hard enough. And please don’t put pressure on us to make more of an effort. Believe me, we’ve already tried the “mind-over-matter-stance”, it doesn’t work with our bodies. We’re not being awkward deliberately; and we are opening up because we need your support.
Holding Space
This leads me on to my next point. Sometimes, all we need is for someone to just listen. No judgment. No suggestions. And definitely no “…but have you tried Yoga?”! Sometimes all we want is someone holding space for us and letting us have a good old rant about the injustice of life.
We’re not all the same
Please take note that my journey with MS is not the same as that of your aunt Joan’s. Everybody with MS has a very different experience and it is not fair to be told that just because someone else is doing really well, I should too. In actual fact, I have come to learn that it is most likely the case that you cannot see what your aunt Joan is actually going through because much of what we experience on a daily basis is completely invisible.
Keep us included
Yes, we often cancel plans at the last minute. But please know that we hate having to do this and we feel super guilty about it already! Don’t let it stop you including us. We are still the same person inside and getting an unexpected invite or a text to check in with me, can literally make my day. Don’t be afraid to keep reaching out.
Three things you should never do
Listen, it is super depressing and I have already spent hours in the middle of sleepless nights going around circles of these exact thoughts!
Pity us
I know that often, this is not intended to come across as pity and I know comes from a really loving place, but it is so so hard to deal with as a patient. I honestly cannot cope with someone telling me how terrible my situation is and how sorry they are about what’s happening to me.
It is super depressing and I have already spent hours in the middle of sleepless nights going around endless circles of these exact thoughts! So much so, that I have stopped opening up to people like that because I simply cannot deal with the negativity. I need to stay focused on the belief that tomorrow is a better day and I might just turn the corner.
Assume
Don’t assume anything about how we feel inside. I’m really open with everyone about my health. I am happy to answer all your questions. Yes, really! Don’t assume that because I’m laughing and in a happy mood that I can walk two miles to the carpark. Chances are I probably can’t and it is really awkward and tiring constantly having to explain the same things over and over.
Don’t stop loving us
Love the person with MS and make sure you show them that you do. They are still the same inside, make sure to remind them of that. It is the single best thing you can do to let you both feel some kind of normal. Include them just as you did before and make them feel wanted regardless of the limitations their body suddenly presents.
How have you supported a friend with a chronic illness like MS? Do you have any tips you would like to share?
