Pay It Forward: Talking To People Newly Diagnosed With MS

People newly diagnosed with MS are understandably rattled. I try to pay it forward with compassion and by sharing the insight I've gained over the years. It's personally rewarding and hopefully helpful to them.

I met with someone this week that was recently diagnosed with MS. She’s justifiably having a hard time, and I’m glad she sought out the NMSS self-help group. She contacted me and attended our group meeting. We agreed to have lunch following the meeting, and at the end of our long lunch she hugged me and said she felt better. This was the best gift she could have given me.

I was diagnosed seven years ago, and I remember how lost I felt. In 2008 there were web resources, but not the volume and patient interactive groups that exist today. I scoured the local library and web for information, but I felt like anything that I related to was few and far between.  Now the advice online is overwhelming in volume and the range of advice contradictory. I think having someone to talk to one-on-one that understands and is experiencing the same illness is useful.  I hope to help others when they ask.

I’ve spoken with newly diagnosed people a few times now, and I think it’s been helpful that when I talk to them I try to:

·         Listen to them. Ask them about their experience so far. Leave it open. They’ll focus on what’s important to them.

·         Validate their experience. When a person shifts from pre-diagnosis to post-diagnosis, everything is viewed through a new lense. And every relationship they have with each family member and friend is going to change.

·         Offer personal experience in similar situations, but acknowledge that their experience may be different.  Know that what helped me may not be what will help them.

·         Acknowledge that each case of MS is unique and because of that, I think each experience is paradoxically normal. MS is very confusing with a wide range of symptoms. Some symptoms are vague, and others are glaringly affecting. But none follow the cause and effect explanation that an injury provides. A twisted ankle may hurt, and you can conclude it’s sprained. There’s not usually a triggering event that explains fatigue, blindness, numbness, constipation, paralysis, or pain. It can come and go with no way for us to understand how we can stop it or prevent it next time.

·         Each person is on a journey. Not all information is useful or able to be absorbed when everything is new and overwhelming. Pick the most frustrating issue for them, and plant a seed of solution or hope.

·         Ask them as they reflect now if they had symptoms that came and went in the past. They may still be in the midst of an exacerbation, and feeling terrible, depressed, and scared is normal while still having an exacerbation. Especially when an MS diagnosis has come out of the blue. It’s frustrating that no one can predict how long the exacerbation will last, but if symptoms came and went in the past I’d guess that they will subside. I’m 99% confident that this person will feel better again.

·         Assure the person that they don’t need to worry about forever right now. Give it three months to see if symptoms improve. And if symptoms don’t improve in three months, they can figure out what to do then. There's no need to worry now about what may not be a problem in the future.

·         Let them know that life can be better after MS diagnosis. Children can learn to be more compassionate and independent. Relationships can grow to a healthier dynamic. Being forced to deal with the limitations MS demands can also lead to living a life worth loving.  Gratitude for what still is can make for more joy in life.  

·         Offer to be available in the future to talk. They may or may not call. But sometimes just knowing someone would be there is enough.

As I compile this list, I recognize I strive to do these things and I may be better at it sometimes than others. We’re all human.  I’m not the person I strive to be all the time, but I’m getting closer each day.  I may have more to add to this list as I grow and learn more, but this is a good start. I’d love to hear suggestions!