“My friend was just diagnosed with multiple sclerosis last week.”
She said it because she’d overheard me telling someone else about some good resources for studies that had been done, but for someone newly diagnosed, I had other advice. I told Amy that a lot of people lose their friends when they get sick and are no longer able to be as social as they had been before. I told her to make it clear to her friend that she’d be there for her, no matter what. And that she then needed to follow through. I told her that a lot of web sites indulge in fear-mongering, and that she needed to tell her friend to ignore those sites. I told her that her friend needed to talk to others with MS, but only the ones who could be realistic and encouraging, not the ones who are in denial or who will tell her that her life is over. Amy asked how her friend could find the right people while avoiding the wrong ones and I told her to do the research herself, to go on Twitter and on blogs, filter out the negative ones, and give her friend links to the better ones. I warned her that it would be scary and discouraging to see some of the writing, but that it was the best way to help her friend from hundreds of miles away. Amy said that her friend was wondering if she should leave her job and I told her to tell her friend not to give up anything before she has to; when she becomes too disabled for her current work then she can find something else, but there’s no reason to act disabled before she really is.
And then I gave her my email and phone number and told her to have her friend get in touch with me. But I doubt the friend will.
When I first started feeling sick, I felt so alone. I didn’t know anyone else with symptoms like mine. I looked in books, but I didn’t find anything. The world wide web was just coming into existence and didn’t have a lot of information. As my symptoms progressed and the internet grew, I tried again, but with no luck. Now it’s the opposite: there are too many places to turn. Someone who is newly diagnosed can easily be bombarded with information, some accurate and some not. There are scam artists and legitimate resources. There are bloggers who talk only about the worst symptoms and others who act like life will never change. There are horror stories scattered across social media like landmines. There are so-called “inspirational stories” leaving most people with unrealistic expectations of what they are expected to achieve. If you look hard enough, you just might find, hidden amongst all of that, a few people talking about the reality. They discuss the good and the bad, the easy and the difficult, and present it as fact.
What’s missing, I realized while I spoke to Amy, is a mentor. There are probably a few hanging around the web, but I haven’t met them, and I imagine they’re even harder for a newcomer to find. We see mentors in business situations all the time, but where’s the mentor for someone newly diagnosed with a chronic illness? Where’s the person to guide you when you’re scared and your family and friends don’t understand? Where’s the person to help you navigate doctors and insurance and nightmares about a scary future? I needed that when I first got sick more than 20 years ago. People need it now.
The other day it was Amy. Last month it was the woman who gave me my tetnus shot. I can’t help everyone, but I’ve decided to label myself a “chronic illness mentor” so that at least the occasional person will feel comfortable calling me. I’ll print up some free business cards and hand them out. I will make no promises. I won’t cure an illness or even make the journey easy, but I hope that I can at least make it a bit easier for people at a very difficult time.
Does this sound like a reasonable approach? How would you offer your help to people? What else do you think I should do? Please comment and let me know.