by Carolyn Thomas ♥ @HeartSisters
In 1907, Miss Helen B. Pendleton was hired as the first social worker ever at Johns Hopkins Hospital in Baltimore. The only employee in this new Medical Social Work department, Miss Pendleton was given an office that was also the storage room for surgical supplies. Her role was to help patients address problems ranging from clothing to housing, child care, medications, leg braces, eyeglasses or dental work.
Her boss was the legendary Dr. William Osler, first chief of medicine at Johns Hopkins. Years ahead of his time, he recognized the importance of addressing both the emotional and physical condition of patients. He even established an innovative home visiting program in which his medical students learned about the living conditions and personal problems of their patients.(1)
He believed that these were often the cause – not simply the result – of illness.
Hospital social workers helped to address not only the practical needs of patients before discharge, but more importantly, they offered psychological support to patients and family members during medical crises.
Modern social work is focused on our individual and personal issues, but also with important broader social issues like poverty, unemployment and domestic violence.
But today, with increasingly shorter hospital stays and the resulting increased work demands for cardiac social workers, the freshly diagnosed modern heart patient may not even see a cardiac social worker before being sent home from hospital.
That is just what happened after my own heart attack. In fact, the first cardiac social worker I ever met was the guest speaker at the last class of a 7-week Heart To Heart cardiac education program for patients, two full months after my hospital discharge.
Frankly, I was a mess by then, convinced by my not-yet-diagnosed coronary microvascular disease symptoms that another heart attack was about to hit any minute now, and obsessed with tidying the apartment every night at bedtime. It may seem bizarre, but I now suspect I was doing this so that when I died in my sleep, things would look nice and tidy for the paramedics (or worse, my family) who ultimately discovered my corpse.
After that class, I asked the cardiac social worker why her excellent two-hour presentation about the psychosocial impact of heart disease on patients was the very last one of the 7-week series, instead of being the first (back when I really, really needed to hear it). She replied: “We wouldn’t want to scare people off.”
In hospital, today’s cardiac social worker is typically the member of the care team who can sit down with an overwhelmed, frightened hospital patient to ask the questions I wish I’d been asked before discharge, such as:
- Is there anybody at home who can help to care for you once you get home?
- Is there anybody at home you will need to take care of?
- Are you able to take enough time off from your job to recuperate?
- Will you be able to afford the expensive new heart medications you’ve just been told you need to take every day for the rest of your life?
But one of the most important roles of the cardiac social worker is simply to acknowledge the life-altering effects of this diagnosis on the patient. As Kate Jackson wrote in Social Work Today, chronic illness like heart disease invariably means experiencing many losses.(1)
“Patients often feel like they’re walking down a dividing line between the past and the future. Looking backward, they can see everything the diagnosis has taken away from them or has forced them to relinquish. Looking forward, they can’t see anything quite clearly. There’s no going back to the past, and the future can seem uncertain.”
These losses can be difficult to resolve – and often even permanent. Social workers call them infinite losses, says social worker and author Mila Tecala of the Center for Loss and Grief in Washington, DC.
Depending on the nature of the illness, these losses may include:
- sexual function
- cognitive function
- mental health
But as Tecala reminds us, although these losses may be vast, the grief they arouse likely will go unrecognized or unaddressed – oversights that can have severe consequences to future health:
” Because chronic illness can strip away many of the characteristics that form identity at the same time it causes disability and loss of livelihood, the totality of the losses is potentially enormous. Since these losses aren’t tied to one event but are multiple and repetitive, the ill person may live with perpetual grief, known as chronic sorrow or sadness.
“The most prominent component is fear: fear of pain, disability, recurrence or death.”
Most often in life, grief is a reaction to a single, time-limited event such as a death of a loved one. Jackson quotes Beth Kane, a New Jersey social worker who specializes in working with patients living with chronic illness:
“Individuals often don’t seek support – either because they are unaware that help is available, or they don’t know how to approach anyone for help. There’s still stigma linked to participating in professional counseling or seeking support services. It’s not uncommon for patients to feel that they’re weak or crazy for needing emotional support.
“They think they’re the only ones who feel this way. And well-meaning friends, family or health care providers may compound the difficulty. Some, for example, may try to add a helpful perspective by saying things like: ‘It could be worse!’ or ‘You look fine! – both statements that invalidate a person’s physical and emotional suffering.
“The notion of ‘it could be worse’ translated into ‘you could be dead’ is a big roadblock. There is a lot of material out there about positive thinking, which in its own right has its own merits and can be useful. But when statements like this are made or not made but used as a viewpoint, it is very dismissive of the pain the person experiencing this type of grief is trying to manage.
“Telling a patient that things could be worse is not only unhelpful, but it also minimizes and dismisses the person’s right to have their feelings.”
Jackson adds that our health care providers, although certainly aware of the serious diagnosis, are often unable to spend the time required to address every issue of loss that may arise with each patient. And patients often aren’t even aware that grief is present.
Under these circumstances, there’s a grieving process “that most often eventually leads to resolution or closure along with the healing that provides the person the ability to experience the pain of loss differently and not as acutely,” Kane explains.
Strategies that medical social workers have found useful to help their patients deal with this grief include journaling and mindfulness-based therapy. Written worksheets can also focus on weekly goals of the patient’s choosing to help them regain some sense of control and mastery over their lives.
Kane cautions patients, their family members and other healthcare providers, however, not to set the bar too high:
“Help individuals focus more on what they can do and at the same time to find new interest, new structures, and new routines. In the course of doing this, we can help provide them with new coping skills and outlets for their feelings.
“This does not mean we tell them how lucky they are or that things can be better, but rather that they are still valuable, they still have something to contribute, and can still be very active participants in their lives.”
Hug a social worker during World Social Work Month!
(1) Kate Jackson, “Grieving Chronic Illness and Injury — Infinite Losses: Social Work Today. Vol. 14 No. 4 P. 18, 2014.
(2) Kay Davidson and Sylvia Clarke, editors, Social Work in Health Care: A Handbook for Practice (New York, Routledge, 1990)
Q: Were you able to see a medical social worker before your hospital discharge?
Study: 91% of patients are discharged without a written care plan
Why don’t patients take their meds as prescribed?
Handling the homecoming blues: the third stage of heart attack recovery
The simple new tool that predicts how well you’ll do after discharge
How we adapt after a heart attack may depend on what we believe this diagnosis means
“I’m not depressed!” – and other ways we deny the stigma of mental illness after a heart attack
Six personality coping patterns that influence how you handle heart disease
“Seeking Social Solace”: why aren’t heart patients online?
More about the important work that social workers do (via the Canadian Association of Social Workers)
9 thoughts on “Learning to live with “infinite losses” in chronic illness”
This article was very moving for me. It hit home in many ways, particularly the list of losses. I was diagnosed with congestive heart failure and mitral valve prolapse in 1998. I had thought my profound fatigue was due to my Chronic Fatigue Syndrome, Fybromyalgia, and very physically, emotionally and intellectually challenging less-than-full-time job.
Although I didn’t have a name for it, I was familiar with infinite losses. Now my career was over. My income was gone. My usual social contacts were gone. Before long my ability to navigate my house was gone. I had already lowered my expectations repeatedly. My cardiac diagnoses were shocking to me.
My first open heart surgery was in 2000. The second was in 2011. There’s no “fix”, no guarantee that this or that will enable me to halt the lowering of my expectations. My cardiac surgeon cannot tell me whether or not I will need surgery again someday. My latest additional diagnosis, in December, was Prinzmetal angina, but I’m not responding as expected to the med, so it may be cardiac microvascular disease so another med has been added to the 30-something I take every day. And I have to have my nitro spray with me at all times. And wear my compression hose.
I didn’t mean to write a “poor me” piece, Carolyn, but your post hit me where I live. Feelings I don’t usually acknowledge came flooding to the surface. There are lots of people who have complex medical conditions. Maybe someone will read this and feel less alone.
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Hello Jenn – thanks for sharing your unique story here. You’re so right – we are definitely not alone. No matter how many diagnoses people live with, we can often find others who have walked in our shoes (or hospital booties). That awareness doesn’t help ease symptoms, but it’s oddly comforting to feel less alone. Good luck with your new meds to address your cardiac symptoms. PS I too carry my nitro spray with me at all times – would never leave home without it!
Loved this column Carolyn. So often the emotional impact of a chronic illness gets overlooked while we focus on the obvious physical symptoms.
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Very true, Kit. Yet there’s a profoundly obvious mind-body connection that, as you say, is often overlooked for so many reasons.
A perspective from a recent discharge, Feb. 21: the discharge group of people I saw asked the questions about physical things, such as medicines and the home situation. But not one person – then or during the hospital stay or after at the cardiologist’s – has ever addressed the psychological component, warned about depression, said what to do with side effects, mentioned to possibility of traumatic stress from the experience.
At the hospital where I was admitted twice during the two-week period it took them to figure out I needed three stents, there was no counseling, comfort, visit from a chaplain offered – nothing.
So I can’t say that this aspect was dealt with at all.
It is good to ask if someone will bring you food, but maybe they hope the other, fuzzy psychological side will take care of itself? With (I read somewhere recently) a 60% depression rate, you’d think they might mention it just so you know what it is and what to do. It hits like a second bolt from the blue.
I removed the hospital names from this comment, but it was in NJ/PA – names available if you think it helpful.
I will tell you of infinite losses. I had a massive MI in October. I have 40% blockage in other artery; dr is trying meds.
Worse thing ever in December, my oldest son died from suicide, he was my heart. My mother died 8 days later, we were so close she was my good friend and confidante. Nine days later my 17 year old poodle died, she was my sweet little baby.
I also have MS, been waiting for disability because I can no longer work. I’m a nurse. I don’t know if I’ll ever be able to do anything.
The fatigue from coronary artery disease is terrible. Can anyone help me???
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Oh Lisa. There are no words to describe all the dreadful events you have experienced, and in such a short period of time. I am so sorry for these tragic losses, piled one on top of the other – what we used to call when I worked in hospice palliative care “complicated grief”. Grief in itself can cause crushing fatigue – even without any heart or other medical issues. The only possible way to get through this is one day at a time, one hour at a time. You are still in early days yet, and time really is the healer here. I hope you are seeing a professional counselor to help you. If not, please reach out to a counselor, therapist, social worker, pastor – or ask your physician for a referral. Here’s some information about complicated grief that may help a bit (see page 5 for “Multiple Losses”).
As this post says, when these losses happen, “there’s no going back to the past, and the future can seem uncertain”. Best of luck to you as you take each small step…
Lisa, I am deeply saddened to read this and wish I knew you personally to give you a loving hug of support. I can only share how I have dealt with multiple losses, and vast health problems. I worked in the medical field for over 30 years, and wanted to still be of value, but I cannot work due to a brain-stem aneurysm bleed, 2 strokes, heart problems LVH untreated because the cardio dr said I had too many problems! – and an autoimmune blood antibody issue that keeps me living pretty isolated. I cannot fight infection.
I am a Christian, and my main support is the Lord Himself. I have a very hard time not being able to be with people as I had always worked with people in the church too, counseling, and was a lay pastor. It was devastating when this all happened to me. I lost many family members too, and yes even my beloved tiny hairless dog Miss Miracle last Jan. to devastating cancer.
The way I coped, and still cope, is that I used my medical background to help others online, on prayer lines, and to encourage people. Many times people need medical help, and cannot afford it. I was used to saving lives more than one time-one girl had gotten home from a surgery and her tongue was swelling from anaphylactic drug reaction – I told her to go to the ER NOW…it saved her life.
In time, you may want to help others that way, even if it is just one a day. YOU ARE NEEDED. The secret is to find your “new normal.” I am on an international prayer line that has supported me for over 14 years, and I give back to them, of the spiritual and medical experience I learned. I also have a type of chihuahua sanctuary here for elderly dogs. Your medical background could benefit the dogs or pets you choose to help. They give me a DAILY reason to get up, and have a routine. I do not think I would have survived without them. They do not know I am limited! It is wonderful to have their love and dependence on my “mothering” skills. If you do not have a pet, please consider one. I use a mobile vet, and she too is a great friend to me. Your grief process will be difficult for you for a while, but you will survive, and the gift of all of this loss is that now you will know HOW to comfort people who have gone through exactly what you have.
God will send them to you. I gained more genuine relationships than I ever had when I was well. So take heart, my friend, there are other days up ahead that will hold some joy and less pain. Stay in touch – we care about you.