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Myeloma patients need emotional support

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Myeloma patients need emotional support

I’ve had to make some pretty tough therapy decisions lately. It got me thinking. Where do patients like us go for emotional support?

Online? Hard for me to dis that approach. Support groups? They can be exceptional ways to learn more about our cancer. Phone counseling? Patient to patient mentoring? Seeing a therapist? How about intimate, heartfelt conversations with a spouse and/or caregiver?

FullSizeRenderAll have their strong points. But there are significant downsides, too.

Online exchanges can help us feel like we aren’t alone. We can pick and choose who to respond to. Writing about our hopes and fears can help us feel better. But like a sugar high, reality can come crashing down on us later. Respondents have no obligation to be there when we need them most: to reassure us and follow up. Are you comfortable sharing your deepest hopes and fears for all to see?

One would think that organized patient support groups would be the answer. But one thing I’ve learned working with–and attending–myeloma support groups over the years: groups aren’t a great place for patients to share their insecurities.

Yes, the interpersonal relationships and friendships made can be awesome. Yet I’ve watched other group members squirm as a member cries, or shares fears about death and dying. Peer pressure to stay positive is not a recipe for helping a patient or caregiver feel emotionally safe.

Phone counseling? I’ve found this approach to be uneven at best. Some phone counselors are excellent, others not so much. I recall working with someone I really liked one week, only to learn that they weren’t available when I called back at our scheduled time the next. An example of how it can be hard to develop an ongoing relationship with phone counselors, especially volunteers. As with online support, will they be available when we need them most?

The same drawbacks apply to patient mentoring. And while seeing a professional, trained therapist might be the best option, ongoing therapy can be expensive. That, and some counselors are better and more emotionally supportive than others.

Our spouses, family members and caregivers want to help. And they should be aware when we’re stressed or suffering. But think about the pressure this adds to an already difficult and ongoing dialogue. Great; we unburden ourselves on our caregiver. How are they supposed to cope? Who do they go to for answers when they’re unable to help?

I have yet to find a solid source of emotional support that I can recommend. Hearing from readers has been amazing!  I’ve been able to piece together a loose patchwork of emotional resources that works for me, but it hasn’t always been easy. Honestly, I could use a lot more help.

The stress caused from the realization that, “I’m probably going to die soon,” is starting to get old. Sometimes hearing that “everything will be OK,” or “Pat, you’re tough. I know you’re going to be around for a long time,” doesn’t really help fix anything.

I’m sorry, but thinking positive–and advice to live one day at a time–sometimes isn’t enough.

What about grief counseling? I’ve lost too many friends to myeloma already this year. Who’s going to help with that? And what about anxiety caused by the difficult therapy decisions many of us are forced to make? The emotional slug-to-the-gut we experience after relapse?

So let me ask you: Where do you go for emotional support? To talk through angst you feel over changing therapies or doctors? To grieve the death of another patient you know, the loss of a spouse or loved one, or over your own mortality?

If you aren’t comfortable commenting for all to see you can email me: I won’t share your name–or any other personal information online–without your permission.

I’m anxious to hear from you.

One caveat: As you mull this over, please be honest. Not for us, but with yourself. Positive platitudes make for good sound bites, but we all have fears about an uncertain future. What about those?

I hope this exercise helps you feel better; that a dose of reality and soul searching doesn’t make things worse. But how would I know? I’m not a trained therapist…

Feel good and keep smiling! Pat