While I’m on the subject of getting diagnosed with MS, I thought I would share some thoughts for people who might find themselves in a similar situation. I’d never presume to be an expert — being an expert at receiving a tough diagnosis is definitely not something I aspire to — but here’s what I would tell a good friend.
1) Don’t be afraid to look stupid. Doctors and nurses speak quickly and use words and phrases that are very natural to them but completely alien to the rest of us. Stop them. Ask the dumb questions. Lots and lots of them.
2) Don’t assume the worst. Bad news is bad news, but that doesn’t necessarily mean yours is the worst news. Try to reserve judgement if you can. Not everything is defined by that initial conversation. Give it time.
3) Get another opinion. I got three different diagnoses last year, all from MS specialists. I’m actually glad I did. It helped me understand this disease. If your insurance will support it, a second or third opinion might be helpful to you, too.
4) Look after your mental health. Again, if your insurance supports it, think about seeing a therapist. Finding out you have a disease is life changing, and it isn’t easy. There are people whose job it is to help. Take advantage of that.
5) Be careful online. Of course you’re going to do research on the internet, and there’s some valuable information out there. There are also some real quacks. Choose your sources carefully and protect yourself from the crazy.
Be well, and good luck!