Saturday, March 21, 2009

Advice for the newly diagnosed

I remember sitting in my car in 1996 crying. I had just walked out of the doctors office and he'd given me the news that I had MS. I'd asked him a few questions and then was strangely blank. He asked me if I had more questions, as I think he had a lot more he wanted to say to me, but I said "no, probably tomorrow I'll have a lot, but not right now." I walked out of his office and sat in my car for 10 minutes and cried.

I went home and called my best friend and told him the news. He asked if I'd had dinner, and when I said no, he told me he'd be by in a few minutes with some pizza. I called my parents and had a very short conversation with them. I told them the news, that my friend was coming over, and that we'd talk more tomorrow, but I just needed to digest the news on my own for a moment. I called my other best friend and he said he'd be by with some beer. I called my third best friend. He asked if I wanted pizza, then beer, and finally settled on bringing by some videos.

We watched comedies, talked, drank beer, ate, and laughed for a long time that night. It was just what I needed: to be reminded that even if I was sick with a disease about which none of us had the slightest understanding or knowledge, I was still loved. The next day, I started dealing with what had changed.

It took me awhile to realize it, but actually very little had changed for me. I was still having this strange problem with my eyes, only now it had a name. But other than that, things were not that different. The change was in those around me.

I quickly realized there were two types of people: those who could support me and those I had to support. Here I am, 26 years old (my birthday was two days earlier), and dealing with what everyone thought was a major change to my existence, and I was having to offer support to most of the people I met. There were some who just cried when they heard the news. So I had to comfort them. I'm a guy and had never learned how to cry with others, so the only thing I could do was to try to hold them and try to comfort them.

There were those who got scared and asked the stereotypical questions: so, are you going to have to be in a wheelchair now? They usually asked it as we were taking my dog for a walk. Or worse yet, I would just see the fear in their eyes, but they wouldn't say anything.

Maybe it's my nature, but I always tried to have compassion for these people. I had to realize that the news was difficult for them to hear, especially so for those who loved me. While I was dealing with it 24/7 and living it, they were only dealing with it a little bit at a time, so in some ways, it was much more difficult for them.

And then there were those who had no emotional reaction at all, or kept it in check, which gave me the space to have my own reaction and deal with my emotions. There weren't many of those people, but I really valued them.

One of the worst pieces of advice I got was to keep quiet about it. I'm not a quiet person by nature and how weird is it to be telling people who I've known for two or three years that I'm having an episode but didn't want to tell them earlier. It shakes the trust in the relationship. It's much easier to just talk about it then they can feel free to ask questions when they have them and MS is just a part of my life, not the elephant in the room.

So my advice for the newly diagnosed:
1. Surround yourself with people who are going to love you no matter what. (I think this is good advice for life in general too.)

2. Get ready to comfort a lot of the people around you.
Try to balance your days between the people you have to comfort with the people who will actually comfort you. One of the advantages of being newly-diagnosed is that you can be rude to people and they'll write it off as part of your newly-diagnosed status. That gives you the freedom to spend time with who you want and not feel obligated to spend time who aren't going to be helpful.

3. Give people a box to understand you.
One of my rules is that I never tell people I have MS without then asking them if they understand the disease. I've found that if I don't, no matter what people's visible reaction, that if they don't know what MS is, they will imagine the worst things and it will change our relationship for the worse. They will always be worried about bizarre things that stem from theirs fears. If I tell them about MS it does two things: it gives them a way to understand what's going on and it lets them know that I'm open to talking about it (though I usually explicitly say that too). The understanding lessens their fears, and my openness makes it a topic of conversation instead of something to be skirted around in uncomfortable ways.

I can't tell you how many people have called me to say that a friend of a friend just got diagnosed and the friend needs to talk to someone about it. So I end up explaining MS to the friend so they can be a better friend to their friend with the new diagnosis. I always got the feeling that just having a normal conversation about it is very relaxing for those who are scared by it.

So that's my advice for the newly diagnosed: stick with the people who will support you, not those who drain you, and help people to understand what you're going through. Let me know if it's helpful.

1 comment:

  1. Aaron,

    Thank you for leading me to your blog. You've got some wonderful posts already. Welcome to the MS Blogging Community and I invite you to read at Brass and Ivory as well. Will certainly add your blog to the list.