I’m not a psychologist, a psychiatrist or a therapist. I don’t have any formal training, and I certainly don’t have any experience with being diagnosed with a rare, confusing, absolutely frustrating condition. When my best friend, Mary, told me she was diagnosed with Cushing’s, my first thought was “thank goodness — there is an answer!” My second thought was “so, exactly what is Cushing’s, ACTH, cortisol etc.?” and we’ve never looked back. Early on, Mary told me how some Cushing’s patients lose their friends because of their illness, retract into themselves and are left without a support network, or a close friend to help them through their ordeals. Mary tells me I really helped her deal with it and that perhaps if I shared how I was a friend, it might help others who know and are friends to Cushing’s patients. Some people can’t deal with illness, as it reminds them of their own mortality, and Cushing’s adds a level of frustration not often seen. It can take a lot of work to put friendship ahead of fear and frustration.

I’ve known Mary for more than seven years now. Her Cushing’s was full blown by the time we met, and I’ve lived through almost all of her medical problems, except the broken hip that never healed and resulted in a total hip replacement at age 30. She and I “clicked,” and we became close friends. So what did I do to help her? Basically, Mary talked, and I listened, as the “healthiest unhealthy” person I know went through the most difficult period of time I have ever seen. I listened during the hyperactivity, the sleepless nights, the excessive spending, the overwhelming work stress, and the stubborn weight that refused to move, despite rigorous diet and exercise. I shared in the frustration when no medical tests revealed why she didn’t heal, or couldn’t sleep more than two or three hours a night, or explained any of the other symptoms. I listened during the skin graft from a simple cut, and I was there for the lung embolism and the stress fracture that broke her leg. I listened as doctors were unable to diagnose Cushing’s, and who thought her condition was something she could control.

And I listened, as Mary told me about Cushing’s. I’ve listened as Mary has gone through the hard times after diagnosis. Pituitary surgery, radiation, finding out the tumor wouldn’t die easily, the broken arm, the decision to have her adrenal glands removed, a serious post-op infection that put her back in the hospital, awful medication side effects, the struggle to manually regulate her cortisone levels, pronounced mood swings and the sheer frustration of being unable to clearly see the end of the journey. I’ve also listened to her fights with her health insurance carrier, and we’ve both been tempted to physical violence by incompetent labs that lose or mess up tests. But I’ve also listened as the weight seemed to melt off, as the hyperactivity disappeared, and as sleep took eight, or more, hours. I’ve listened as everyday there seem to be new treatments discovered and new advances made in understanding Cushing’s. So what else did I do?

I also listened and I talked when Mary DIDN’T want to talk about Cushing’s. There were days when she, or I, or both of us wanted to forget about this mysterious, maddening, nerve wracking condition for a while. Cushing’s is a 24 hr a day condition, but that doesn’t mean your interest in anything else, or your ability to talk about non-Cushing’s matters atrophies. Being able to carry on long conversations where words like “Cushing’s,” “doctors,” or “the lab lost my 24 hr test again,” never appeared, kept us from burning out on talking about Cushing’s. We needed to step back from Cushing’s and talk about something else, like my tendency towards irrational obsessions, our shared interests in gardening and crocheting, or any topic in the world we tend to wander to. By not always focusing on Cushing’s, we are able to handle the times when we needed to.

While I listened, I also sympathized and supported. I let her take the lead when we talked of Cushing’s. I didn’t pass judgement. I believed what she told me and never believed that it was “all in her head.” I didn’t minimize the suffering or frustration that Mary was going through. I saved my frustration with this disease and what it was doing to my friend, for the incompetent labs, arrogant doctors and short-sighted HMOs.

I also think that we learned together. We quickly learned that Cushing’s is so unknown, that every week the doctors are uncovering something new, so what she tells me one week, may be reversed the next week, and off in another direction the third! That’s one thing that has been so difficult about this – just when we expect clear sailing, Mary has an unexpected reaction to a new medication, a new treatment doesn’t do what it is supposed to do, OR tests come back with confusing results. At first, we thought Mary was just an unusual Cushing’s patient, but since her involvement with CSRF, and from attending the conferences, we found out that unusual is normal! We quickly learned to be prepared for unusual side effects and unanticipated symptoms. I think we both supported each other, as both Mary and I were always so hopeful that the next step would be the solution. With friends, it sometimes happens that one is upbeat when the other is down, and this balancing act has kept our friendship strong.

While sometimes I did advise, I never demanded, and I recognized that I could do little else, but listen. I couldn’t fight this battle for her. It was HER body the tumor grew in. It was HER body that suffered under the overproduction of cortisol for 10 years before it was diagnosed. SHE was the one suffering from the side effects of the medication, and would be the one to suffer during the manual regulation of her cortisone levels. I couldn’t demand that Mary follow this doctor’s advice, or attempt this treatment from that doctor. I wasn’t the one who would have to live with the results.

So how have I survived? Cushing’s hurts me as well. Make no mistake. I never, ever, EVER, forget that this is Mary’s “show.” But because I care for Mary, I’ve been affected by how she’s been affected during the course of this disease. It hurts when she would tell me about what side effects the different medications would have, and she would have to decide each week whether she wanted to be nauseous, sleepy, starving, or have her bones hurt so much she cried. It’s painful when one of the smartest people I know talks about days when her short term memory is gone and her reasoning skills have flown out the window. It’s hard when your best friend talks about having brain surgery or her adrenal glands removed. It’s difficult to deal with when she explains her emergency cortisol, and how to use the syringe and medication. It’s tough when she talks about severe moods swings that have no purpose, except that they are the result of Cushing’s. It is confusing trying to sort out one test or medication from another. I want to help, but there isn’t much I can do regarding her treatment, except maybe strangling the incompetent lab technicians that mess up or lose the 24 hr tests! While parts of this have been difficult for me, this experience has made me appreciate Mary’s strength, and my own, and that’s a wonderful addition to our friendship.

We did find a way for me to help — even when I felt I couldn’t. I listened, I supported, I believed, I didn’t judge, and I cared enough to stay close. I picked up the phone when Mary didn’t.

Author: Anna M. (July, 1998)