Learning that a loved one, friend or colleague has recently been diagnosed with an MPN may leave you at a loss for what to do or say. You may feel confused. Should you act as though nothing is wrong? Maybe you should tell them about your great aunt who had an MPN. Follow this advice from MPN patients about what you can do that’s meaningful to them:
Reach out and check in.
You can let people know you care simply by staying in touch. Many people with a chronic illness confess that they don’t stay in touch or communicate because their lives have changed so much that they don’t know how to relate anymore. Even if they don’t respond immediately or at all to a text message, email or phone call, keep up the effort. Taking a few extra seconds to contact them makes them feel supported.
Refrain from offering unsolicited advice, talking about a new cure you just read about or telling them about ways they can cope better and just listen to whatever it is they want to talk about. Don’t try to relate by using examples from your life; that just marginalizes their experiences.
Skip the pity party.
Living with a chronic illness can be a moment-to-moment kind of lifestyle. In addition to any physical pain, it can be difficult to handle emotionally. If you notice your loved one or friend is feeling down offer a few actions or words of encouragement instead of pitying them.
Learn about the disease.
MPNs are rare but a quick Google search can give you at least a rudimentary understanding of the illness. Everyone’s situation is different but, with some basic knowledge about MPNs, you can learn how typical symptoms present, what can trigger flares and the warning signs of possible complications. The key is to learn enough to provide support, not to police them.
Support instead of enforcing.
Speaking of support, now that you’ve taken the time to learn about your loved one’s illness and one of the things you learn is that they shouldn’t be eating sweets or drinking coffee, remember that it’s not your job to enforce healthy habits. You can support healthy habits by buying “healthier snacks” or a coffee alternative, but your role is to support, not to become the health police enforcing dietary or other lifestyle restrictions.
In today’s digital world emails and text messages provide a great way to keep in touch. That’s great, but if you can, take the time to make a personal appearance, even if it’s just a quick visit for a cup of tea or a quick chat. Going with them for a doctor’s appointment, lab draw or tests is another good way to support someone. It’s an excellent way to make someone feel like they aren’t in it alone.
Everyone’s different but the symptoms of MPNs may make it hard for your loved one or friend to do some of the things you used to enjoy doing together. You may need to embrace a different dynamic and find alternative ways to enjoy the time you spend together, depending on how they feel. Accept them as they are now and don’t compare them to who they used to be before their illness. That can make it seem as if you’re disappointed in them because they can’t do the same things. Being flexible is a very practical way to support someone with chronic illness.
Be a friend for the long haul.
MPN is a chronic illness and you need to recognize that this is the reality going forward. They may have good days and bad days, but their disease doesn’t have an expiration date. Too often there’s a flutter of activity from friends when someone is diagnosed but, as time goes on the visits and attention wane. Make sure they know that you’re going to encourage and support them forever, not just at the beginning.
The supportive presence of a friend or loved one can influence how well a person mentally and physically manages their illness. Visit the MPN Research Foundation for more information about how to support your loved one or friend who’s received an MPN diagnosis.