When I was diagnosed with multiple sclerosis I was lucky to have great support from my friends and family. It really helped that I was open about what was happening to me, so it felt as if they all went through this difficult time with me.
However, not all the support - although meant well - was appreciated. I found that family members closest to me often fell into two camps: pressure and pity.
The pressure camp
Those who fell in the pressure camp were full of advice to ‘fight’ and ‘stay strong’. They’d say things like:
- “It’s all mind over matter”
- “Don’t give in to it”
- “Don’t let it change you”
Essentially, this advice is good. Yes, when faced with such life-changing news I did need encouragement and I did need to focus on the positives. But I didn’t need that particular advice at that particular time. Before anything else, I just needed time - time to digest and time to grieve. I wasn’t strong enough to fight, physically or emotionally like they suggested I should. As for not letting the diagnosis change me? MS had already done that.
The pity camp
The pity people offered the polar opposite of the ‘stay positive’ encouragement. Their support also came from a loving place and was completely unintended to come across as pitying. Ultimately however, it can be really hard to deal with when you’re the patient. Often, we just need to vent about a new symptom that made an appearance, or a mishap we might have had that day. At this point we just need to be heard and reminded that tomorrow is another day where we might just turn a corner. Instead, those in this camp would make the conversation go down a dark and downward spiral.
Let’s face it, that was the last thing I needed when I’d already had those kinds of negative conversations with myself, late at night when my mind was full and my thoughts were racing. I personally found pity the hardest to deal with and it stopped me from opening up to some people.
So, what can you do to support a loved one living with MS?
Just listen and let us vent to get it all off our chests. This is hard, I know. Listening is especially good in the early days, when new symptoms and complications feel as if they just keep coming and coming. Also if you don’t know what to say I’d suggest just giving us a hug - really it’s that easy!
This is important for both the patient and their support network. We all need time to adjust to a diagnosis that’s connected to so much uncertainty. Patients are often told that no MS diagnosis is the same, so how is it possible to know how our lives will look in five, 10 or 20 years? It’s important to take one step at a time and understand how you can come to terms with the diagnosis as a team.
Try to educate yourself about your loved one’s condition. Find good, reputable sources and read about other patient experiences to help you understand how your loved one is feeling. It is so much easier when you are both on the same page, and when your loved one doesn’t have to try to explain something that can be difficult to put into words.
Encouragement - not pressure - is what we need. It takes time to learn the difference but you will get there. All we need is a little encouragement, not an endless list of clichéd phrases like, “push harder when you get tired” or “there are no excuses”. Those statements are just not true when it comes to MS – believe me, I have tried!
Before my diagnosis my go-to exercise was running. I loved the headspace it gave me and I always pushed my body to improve and to go longer and faster. Now however, things are quite different and pushing through fatigue or pain is absolutely not an option. Instead of pressuring your loved one, encourage them to slow down and take breaks if they need to.
Let them know they are loved
One of the most important things you can do is to remind your loved one that they are loved. This is the best thing to help you all feel some kind of normal, particularly during the initial chaos of the diagnosis. Include them, just as you did before and make them feel wanted, regardless what limitations their body might have.
Three years in - with a treatment plan that is working and symptoms that are more or less under control - I no longer wake up each morning with MS being the first thing I think about. Finally I am able to start looking for the old me again and after years of the right support, now is the time to look at finding the positives. Now I can embrace the encouragement with it no longer feeling like pity or pressure.
UK/MED/19/0194 August 2019