My sister kept me company while I was in the short-stay wing of the hospital for treatment just before I got my MS diagnosis. She’d hang out with me every day while I received my treatments and I think we both just sort of pretended like it was no big deal that I was there. We assumed that if it was a big deal someone at the hospital would have said something, right?
We didn’t talk about the possibility that I could have MS.
I remember calling her after I got the official diagnosis at a follow-up appointment with a neurologist, and it was almost as if we both felt betrayed. How did all those nurses and doctors come into my room at the hospital and not say a word? How could this be happening to me, and at such a young age? We were both in disbelief, and that initial conversation was really just a cycle of anger, shock, sadness, and frustration.
Once I was diagnosed my MS seemed to be the only thing that anyone I saw wanted to talk about. I hadn’t hidden that I was in the hospital, so naturally everyone was concerned and genuinely just wanted to check in. At the same time, it felt like I was reliving the diagnosis each and every time I updated another friend or family member. At that point I still didn’t really understand what an MS diagnosis meant, but everyone around me was asking so many well-intentioned questions (with a faint sound of pity in their voices) and I just didn’t have the answers. I’m sure that I gave people a lot of false information back then — not on purpose, but because I just didn’t have enough time and stamina to figure out the answers to everyone’s questions, let alone my own.
An MS diagnosis can be a lot to process: new terminology to learn, treatments to research, and a whole lot of other information to absorb. And the people closest to you will want to know what’s going on. Where do you start? How much do you tell them? What will they say? There is no right or wrong way to share this news with family and friends, but here are a few strategies I learned from my own experiences that may help during those initial conversations.
First, educate yourself
While it may be difficult to hold off on sharing the news with family, it might be useful to do a little research before you share all the details. Like I said above, I inadvertently gave out a lot of incorrect information shortly after my diagnosis — that was because I was trying to process the diagnosis and educate myself at the same time. I wasn’t ready to share, because I didn’t have the information I needed just yet. What I shared with my family was not entirely incorrect, it just wasn’t the whole truth and so far, it hasn’t been my truth in the decade since my diagnosis, either.
Take some time to learn about MS, talk to other people living with MS, ask your doctors lots of questions, and get a good grasp on the details of MS before trying to explain your situation to others. When you’re better educated on the disease, not only can you answer questions more efficiently, but you may also be able to correct any misconceptions and help ease the fears your friends and family might have.
Start with the basics
There is so much information about MS out there that I found it all to be really overwhelming at first. I decided to go with high-level explanations for everything for two reasons:
- I had more time to learn more about MS and what my future would actually look like.
- A new, lifelong diagnosis like MS can be just as difficult to process for your loved ones receiving the news.
I stuck to my specific symptoms and shared more broad, general information about MS, what it is, and how it might affect me. MS symptoms and severity can run a huge gamut, so I could only talk about what I was experiencing personally and how that related back to my MS as a whole. I explained that MS is a disease of the central nervous system, and because of that, I may experience a variety of different symptoms in all areas of my body. Naturally, my friends and family wanted to know about my long-term outlook, so I think it was helpful to explain that everyone is different and that the best I could do at that time was to focus on managing my symptoms.
Focus on the present
I was 21 when I was diagnosed and during my initial conversations with my parents, I remember we were talking about what would happen when I couldn’t work anymore and how I would apply for disability. Those were both very big and scary topics that I didn’t need to be thinking about at that time. It’s been over 12 years since I was first diagnosed and I still am not even talking about these things. Shortly after a diagnosis, there are a lot of other, more immediate needs to handle — focus on those. It’s OK to set your sights on more short-term goals and avoid talking about things too far into the future. I couldn’t have predicted my future with MS from what I read and learned at that time and no one else can either. In my experience, it’s best to put those long-term fears on the back burner and focus your time and energy on managing your symptoms and doing what you need to do to feel healthy.
Make space for mixed emotions
Dropping the “MS bomb” on my family produced a lot of different emotional responses. My dad was angry, my mom was devastated, my sister felt guilty. My family obviously cares deeply for me, and receiving this kind of news was just as heartbreaking for them as it was for me. I had to learn to be open to the different ways my family members shared their concerns because we didn’t always react the same way. This diagnosis didn’t just happen to me, it happened to my family, too. Even though it was weird and complicated, I had to give them their own space to receive and react to the news.
Prepare for unsolicited advice and information
While my family and friends always meant well, sometimes they shared information or advice that was not very encouraging or uplifting. Most people in my community know someone who knows someone with MS, and they were using those stories to try and connect and be empathetic with me. I had members of my family who shared stories with me about coworkers or old friends who have MS and that are incredibly ill or disabled. This was definitely not the information I wanted or needed to hear shortly after my own diagnosis. Everyone was just trying to help, but sometimes the impact doesn’t match the intent. In those situations, I did my best to find ways to gracefully exit out of those conversations.
Figure out what you need — and ask for help
The most important conversation I could have had around my MS diagnosis would have been to share with my family what I needed from them… but I didn’t do that. I wasn’t sure what I needed, and to be honest I didn’t take the time to really think about it. That made it harder on all of us at first. My family tried to help with whatever they could and sometimes that was overbearing and overwhelming. I wish I had let them know that I needed their emotional support, some help around the house every now and again, and sometimes even just a little space for myself. Over the years I’ve gotten better at expressing my needs with my family and I think we’re all grateful for it. I know that I’ll get the support or space that I need, and they are confident that what they are offering is actually helping.
UK/MED/18/0318 November 2018