Psych Services: An open letter to one suffering from a fatal disease

Lisa Garmezy

This letter to an imagined friend sums up a lifetime of experiences with clients, family and friends. I am grateful for their trust.

 

Dear T.,

 

Your diagnosis is a nightmare. You and K. got horrifying news about protocols and survival rates, and I’m so, so sorry. I’m sharing some ideas that seem to help my clients, with the hope that they might help you. Believe me, this feels inadequate.

 

First, you guys are wondering how far to go with treatment and how fast the disease will ravage your body. Maybe, you think, you should tell the doctors to get lost.

 

Is knowledge power or is ignorance bliss? If things can’t be fixed, it’s not clear that people have a better quality of life by knowing more about their disease. But that’s a big “if.” It’s your call.

 

  1. will have to live with your choices, at least for now. We wives hate that.

 

The two of you face impossible stress in the days ahead. To cope, both of you will need to strengthen your circles of support. Both of you will need to accept offers of help from others, starting right now. Counseling can help. Faith is a shield and a source of hope for so many. I’m not sure what your beliefs are, but check out Job 10:1.

 

Make no mistake about it, K and every member of your family is impacted by this. Your kids, who are just beginning to establish their own lives, may decide to push pause and stick close to home. That’s okay, as is expecting them to help out.

 

Sometimes you’ll be strong for the family, and sometimes, they’ll be strong for you. You don’t always have to be the calmest one in the room. You’re very special to me, but you’re not John McCain.

 

But do not, do NOT be a baby about putting K’s name on accounts and making a will. This will lighten her burden whether you die a week or a decade from now. Get your stuff together.

 

You “just” have to manage your illness, but K must plant one foot in Disease World, and one in the land of work and everyday routines. It gets weird, and physically exhausting. So does waking up at night to give you meds or worry about widowhood.

 

You need to take it slow when pain or fear make you even grouchier than you’ve always been. She is suffering, too. Bite your tongue and tell her how much you love and appreciate her. Encourage her to get out when she can; she probably feels guilty for leaving you.

 

You’ve probably noticed that feeling maimed, scarred, weak and generally awful doesn’t improve your sex life. Be open-minded to different ways to be romantic or sexual with each other, to maintain that connection as long as you can. It’s a loss for both of you.

 

Sadly, if I’ve learned one thing from three decades of doing therapy, it’s that people with serious health problems don’t think their spouses quite understand how hard they have it, and that the well spouses think the sick loved ones aren’t sympathetic enough to them, either. Please open up to K about what you’re going through. After all these years, don’t go out feeling, “You weren’t there for me.”

 

Listen hard to her story, too. Partners of dying patients have told me they think they almost have it harder, because they are the ones facing decades alone. (I’ve heard a lot of secrets.)

 

On the other hand . . . like the draftees in “Alice’s Restaurant,” you are the one who has been detected, affected, inspected, and injected. The pain is all yours. And while K is shaking in her boots, you alone will wrestle in your soul about what waits on the other side. You will watch the calendar the way someone at the airport monitors the time.

 

This is beyond obvious, but illness and dying can be depressing. People overlook it—doctors miss it—as sadness and fatigue become more frequent. You may want to ask your doctor to screen you, and see if meds might help. Depressed people enjoy life less, and they don’t take good care of themselves.

 

Fight isolation, which feeds depression. Hold your loved ones close.  Make amends and reach out where necessary—what do you have to lose? You might not feel like seeing friends and family who remind you of your gone-forever past, but you can’t just stare at the walls. Tell your hunting buddies to come over and not talk about next season.

 

Like a veteran with PTSD, you may feel no one without your diagnosis can understand your experience. That’s why support groups exist. Go at least once—they can offer amazing camaraderie and practical advice. The folks there won’t act like what you have is contagious, like people in your “old life” might. Group members can talk frankly about disability and death, when others around you can’t.

 

Now, attitude matters, and the mind-body connection is real. Still, genetics and access to health care and early intervention all matter more. Your disease doesn’t care much whether you are “fighting hard” or living under a dark cloud. Feeling down won’t kill you. What you feel is what you feel.

 

Don’t let anyone blame you for getting sick. Above all, don’t blame yourself. Maybe you regret smoking in college or skipping physicals or not eating your spinach. Sorry, no mulligans in this game. You were human, and you made mistakes. Try to forgive yourself. The same advice goes for K.

 

Perhaps this hideous mess will teach you to treat yourself with compassion. Don’t expect vast inspirations about life, however. Meghan Daum, after nearly dying from typhus caused by a fleabite, wrote that health crises “don’t always impart lessons, and contrary to what we tell ourselves, they’re just as likely to bring out the worst in people as the best.”

 

Maybe you’ll just stay you—a sicker, sometimes crabbier version of you, but you all the same. Speaking for myself, I love you as you are, and I will welcome that.

 

With hugs and prayers for your (plural) healing, strength, and peace of mind.

 

Lisa