Question: What led you to study Cushing’s and what did you hope to learn as a result of this study?

Answer: Dr. Findling is a known expert in the area and he was asked to give a presentation at the Endocrine Nurses Society, of which I am a member. Traditionally, the endocrinologist has a nurse partner, as I think endocrinologists recognize that they are part of a team. Dr. Findling asked me to be his co-speaker, and initially, they wanted me to talk about diagnostic testing. Quite honestly, I didn’t think that would be terribly interesting, and I thought that there was a bigger story to tell. The story I felt needed to be told, was the suffering of the people with Cushing’s syndrome. So, I asked patients anonymously through a 2 page questionnaire, did it impact your life, how did it impact your life, and is there anything that we could do differently that would help you more?

Question: What kind of a response did you get?

Answer: We had a very high response rate of 63% which included a mix of pituitary and adrenal based patients. We were overwhelmed with peoples stories. Many did not confine themselves to the 2 page questionnaire. One woman wrote a play about how she felt about Cushing’s, many wrote on the back of the page and included extra letters, all pouring their hearts out about how potentially devastating this health problem can be. When this work was presented, I think that everyone listening in that lecture hall could not have been unmoved or unchanged. Just listening to peoples stories, as I read many quotes. Dr. David Aron was in the audience, and he invited me to turn this study into a manuscript for publication in the Endocrine Clinics of North America issue on Cushing’s, of which he was co-editor. I feel honored to have been able to help people tell their stories.

Question: What is the overall impact on patient’s lives?

Answer: Well, I have to use the word devastating. Over 70% of the people indicated that Cushing’s greatly affected their lives. The physical symptoms are of course devastating; the weakness, fatigue, mental problems and the change in body image. All these are devastating. But as with any major health problem, of a long standing nature, out of devastation can come tremendous strength. It’s not always 100% negative. People told me that their belief in themselves is stronger now than when their journey started, they are more assertive, and they understand other’s sufferings much better. Many people have tremendous growth out of this experience, but it is a long process. People have to be prepared for a long journey.

Question: Could you comment on some of the mental difficulties that patients encountered.

Answer: My study said that 85% experienced some type of mental difficulty. This is consistent with other studies. Many things were very, very frightening for people. Several said, ” I feared I was loosing my mind.” The male patients tended to use the word violent, while women described crying. “I can’t stop crying” they said. People’s memories were impaired. Simple things that they had done all their lives became very difficult. They were fumbling and bumbling through life. Emotional instability was a concern as people didn’t have control over their emotions. Cases of severe depression were heart breaking. I will always remember one particular case where the patient had tried to commit suicide and then underwent shock therapy. That was, of course, before obtaining the diagnosis of Cushing’s. In that case there was anger involved, and rightfully so. To have gone through that with no need.

Question: How did patients describe the effects on family life, friends, work and school?

Answer: Many people felt left out of family life. I think that this was mostly unintentional, but when you can’t participate in family activities such as picnics, and ball games, your family tends to assume that you won’t go even if asked. They carry on without you and you become a distant spectator. The men were particularly bothered by the fact that they could not play with their children, as were the grandparents. Mothers were very concerned about their children. One woman actually said, ” I was a bad mother”, which I’m sure she wasn’t, but that is an emotional burden that she will carry for the rest of her life. Several stated that Cushing’s led to the demise of their marriage, others felt it brought it close to that. Cushing’s doesn’t effect just the person, it effects the family. Families count on you for a role that you are just unable to fill. They find someone or someway to replace those roles and you are left behind.

There were a couple of students, and one teen who talked about how difficult school was. She would fall asleep in class and couldn’t keep up with studies. More importantly, was the devastation on her self esteem. She said ” I lost my self esteem, I was fat and people made fun of me.” She was very hurt by these comments. Jobs were definitely effected, partially or mostly due to cognitive functions. There is memory is impairment, confusion, and of course emotional instability. Those that said that Cushing’s had very little effect on their life were home makers who wondered what would have happened if they had been working outside the home. Cushing’s effects all arenas of life.

Question: As Cushing’s patients, we are concerned about recovery. What can you tell us about recovery and how long it takes?

Answer: In this study, 18 out of 41, or 44% said that they were recovered. The recovery period was anywhere from less than 6 months to 30 months. Some patients who did not yet consider themselves recovered still fell within the 30 months window. I think it is important to recognize that recovery is in the eye of the beholder. I also think it is important to realize that physicians don’t look at recovery like patients look at recovery. Physicians look at the biological recovery, where as patients look at their life. I think the medical sociologist, Engel, phrased it the best when he said “The patient’s criteria (for recovery) has to do with how one feels, how one functions, and how one relates.”

Some people who viewed recovery only from a physical standpoint, meaning they were off glucocorticoid replacement, and living life as previously, said they were recovered. I think these people, because of their definitions, were truly recovered in their minds eye. The experience was truly, truly behind them. Many patients said “I’m recovered, but”. The “but” included things such as “I am not as strong as before, I fear a recurrence, I have osteoporosis and will always have to be careful, and I can’t loose weight..” I think recovery is a yes, but, situation. For some, you never recover from an experience like this, because you will always look at things differently after it. One person said “I will never look at chronically ill patients the same way again”, others said “I am reborn”, meaning that they will never look at life the same. For some people, it was a horrible negative experience, but for others, there was hope. I think that the message of hope is an important one.

Question: Were most patients able to return to work?

Answer: Only 5 out of the 41 responses were not yet back to work. Of the five, some were still experiencing fatigue and weakness and did not feel they could keep up with the required pace. A few were dealing with other health problems, and one was still experiencing mental health problems. Another felt that her appearance and the prospect of medical costs scared off potential employers. One patient did suggest using the time off to polish job skills by taking a class.

Question: Do you have any suggestions for patients who are trying to cope with Cushing’s?

Answer: The best thing I can do is use the words from the patients. They said, “Hang in there, because you will get better. Have faith, be positive, don’t give up, but it’s a long journey.” Other suggestions included, ask as many questions of your health care providers as you possibly can, make sure you fully understand everything before they carry out a procedure on you, accept any and all support from family and friends. Sometimes we have a tendency to tough it out, but realize that it is OK to lean on your family and friends. Some said, “If I hadn’t talked to someone else about Cushing’s, I would have literally gone crazy.” One patient said, “It is difficult to have patience through a long recovery, but there is a pot of gold at the end of the rainbow.” “Be prepared for ups and downs.” ” Surround yourself with lot’s of loving supporters, keep a positive attitude.” ” You must let your family know everything about Cushing’s.” “Cushing’s is a living nightmare, you need to talk about it.” “It’s a long road ahead, but there is light at the end of the tunnel.” I think patients in general wanted to help others to maintain hope. I think your newsletter, and possibly the internet, can make it easier for people to talk to each other. Many physicians don’t have enough patients to form a support group, but ask your doctor to speak to another patient who is willing to be what I call a peer counselor, that is a past patient who is willing to share their thoughts, feelings and fears. I do think that if you ask, most endocrinologists will make an effort to reach out and find someone for them to speak with.

Question: How can family and friends be most helpful?.

Answer: There are ways that family and friends can be helpful. Going to doctors appointments can be very important. Many studies have shown that a Cushing’s patient’s thinking is impaired. Explanations of Cushing’s and the diagnostics are complex. It is always good to have another pair of ears. I also think that they can help them physically. One woman spoke about how her wonderful family helped her by laying out her clothes. She was a teacher, and she did not miss any school. Her family picked up a number of things so that she could concentrate on one thing, keeping her job. I think that helping people go to the grocery store would be a good idea. Many mentioned they dreaded the task of shopping, as it was difficult to do physically. Take them there, when it isn’t busy. This may be inconvenient to the helper, but can be so helpful. Look for little tiny ways that you can help them save their physical energy, like putting groceries away or picking something up. Little things can help so much.

Question: Do you have anything else that you would like to add?

Answer: There is a deficiency in the literature regarding Cushing’s that is easily available to patients. Things like your newsletter can raise questions in a patient’s mind, which can then be discussed with their physician. Cushing’s can be a diagnostic dilemma, and physicians and patients need to be as certain as is absolutely possible about the cause of Cushing’s prior to undertaking treatment. I believe that patients can help make their physician a better physician by asking questions.

I would also like to say that we all play a role in healing ourselves. When you have been through an experience like Cushing’s, you need to help yourself heal physically. Sometimes physicians will recommend physical therapy, or rehab programs. I think patients should really think about that, and be compliant in doing their exercises at home. Such a program can really help in physical recovery. I think people have to heal mentally. I think this involves talking about their experience with others who are good listeners. Unfortunately, not all friends are going to be those people. It might be a nurse in the doctor’s office, a counsellor, or a minister. We are sometimes hurt by those we care for the most, but some people can’t be the therapeutic listener that we think they should be. Find someone else. People also need to heal spiritually. Many people commented about prayer, finding a deepening within themselves, finding a strength, and in general finding positive things in devastation.

I also need to commend Dr. Aron for including this work in a medical publication, and also, to thank Dr. Findling for his support and compassion.

Author: Pamela Miller Gotch, RN, MSN (Spring, 1996)

Editor’s Note: Pamela Miller Gotch, RN, MSN, was a nurse in the Endocrinology and Diabetes Department at St. Luke’s Medical Center in Milwaukee, WI where she worked directly with Dr. Findling, who is world renowned for his expertise in Cushing’s. In 1993, Pamela conducted a survey to determine the impact of Cushing’s on patients lives. Sixty two questionnaires were mailed and forty one were returned. This work was presented at the Endocrine Nurses Society meeting in 1993, and later published as part of the Endocrine Clinics of North America issue on Cushing’s in 1994. She was generous to grant the CSRF this interview.