Skip to Navigation Skip to Search Skip to Content
Search All Centers

Single or Married: Getting MPN Support

Read Transcript Download/Print Transcript

Published on November 25, 2019

Key Takeaways

  • Advice for MPN patients on managing relationships.
  • Support can be found in your spouse, family, friends and neighbors. 
  • Different people in your life may offer different types of support.  

How can myeloproliferative neoplasm (MPN) patients find social support? Watch as care partner Esther Schorr shares how MPNs have been a part of her relationship with her husband and ways they have learned to manage it over the years. Patient advocate Maryann Gray also explains how to find support in a network of friends and neighbors, and how different people can provide different types of support. Watch now to hear their MPN expert perspectives.

The Partners series is sponsored by Incyte Corporation. This organization has no editorial control. It is produced solely by Patient Power.

Featuring

All I can say is wow. This is completely fantastic. I am newly MF dx and live in France and am frustrated with language barriers. The information I receive via Patient Power and from this town meeting is priceless.

— Jane , online attendee of Stanford MPN meeting

You might also like

Transcript |

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Beth Probert:               

You know, the MPN is part of your relationship for a very long time. And could you talk a little bit about that, how you went from husband and wife to now being husband and wife and care partner? You know, that is a very unique thing, and you’ve managed it beautifully for such a long time.

Esther Schorr:              

I think the way that Andrew and I have dealt with the ups and downs of him being a patient/now survivor and thriver is very open communication about how we’re both feeling. I will say that when Andrew was first diagnosed, and this is—MPN was actually his second diagnosis, so we’d been through a couple of chapters of how do we deal with this together.

We used counseling. I’m a much more uptight, anxious person than Andrew is. He sort of goes with the flow and is very pragmatic. We had to figure out how we could come together and look at his diagnosis and say, “How are we gonna tackle this together? How are we going to run our family when there’s a bump in the road, and how do I personally as a care partner manage the anxiety that I feel?” He was in a sense less anxious than I was, or at least on the outside.

So how do we handle it? Open communication. He’s having a bad day. Talk to me, tell me what you need. How can I help? If I’m having a crappy day or a bad day, if I’m having a bad day, you know, what do I need? Do I need a breath of fresh air? Please—oh, I will say to him, “You know what? This is just not a great day for me as a care partner. I’m gonna go to yoga class. I’m gonna go for a walk by myself.” Or, “Let’s go for a walk together.”

So I mean, in total, what I’m trying to say is that you hopefully have a partner, whether it’s a husband, a wife, a good friend, whoever it is, that you can share the experience with and communicate and help each other. Whether it’s with a group or it’s just a one on one. I think it’s very much just a give and take of how you’re feeling and what do you need to feel comfortable with what’s going on.

Beth Probert:               

Your feedback is so wonderful, and that will be so helpful to our community here listening because you have to learn. You have to learn what works. And Maryann, I mean, I’m sure you’ve experienced different effects to relationships. Could you talk a little bit as well about how this has affected it and what you’ve learned, how to better manage that?

Dr. Gray:                      

Absolutely. I’m single, I don’t have children. I’m fortunate that I do have a large social support network. As a social psychologist, I know that there are many different forms of social support. There’s a vast literature on social support. And I think about who in my network is best able to provide different kinds of needs. So I have friends and neighbors who are fantastic at tangible support. Do I need a ride? Do I need an errand? Do I need help with something at home? And they are more than happy to help. But some of them maybe don’t want to hear about my feelings.

And I have other friends who will sit and talk to me as long as I want to talk, and really go as deep as I feel the need to go, and they’re just right by my side.

And I have another friend that I call and I say, “Help me think,” when emotion is taking over. He can help me plan. Okay, what am I gonna do? I really don’t feel well today, I have all these commitments. He’ll help me figure out a plan.

So there are different forms of support, and people are better suited to providing some forms than others. A therapist can be a very important part of that. My doctor’s care team is a very important part of that as well, for informational support, for coordination support, and of course the medical treatment itself is a form of support.

So it’s possible, even without a primary caregiver, to have a very rich social support network.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

You might also like