Chronic Illness Statistics: We Are Not Alone

Here are some surprising stats about chronic illness I recently found on a very interesting website, The Daily Headache, about living with and managing migraines and chronic headaches (written by Kerrie Smyres):

• Nearly 1 in 2 Americans (133 million) has a chronic condition
• 96% of them live with an illness that is invisible. These people do not use a cane or any device and may look perfectly healthy.
• Sixty percent are between the ages of 18 and 64
• The divorce rate among the chronically ill is over 75%
• Depression is 15-20% higher for the chronically ill than for the average person
• Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides and more than 50% of these suicidal patients were under 35 years of age

We are not alone. And we have a lot to learn from each other about living with illness. In fact, there is a National Invisible Chronic Illness Awareness week annually in September to bring together and educate people with chronic illness and the people who care about them.

Relationship Roles & Illness: Why Is It So Hard?

Part 3 in a 4 part series on Relationship Roles and Illness

Serious illness seeps into every refuge and rift in the terrain of an intimate relationship. It strains all daily routines and customary roles. The ordinary can no longer be taken for granted. Doctors, drugs, hospitals, and healers merge into the substance of the relationship. Unexpectedly, life and death choices become the focus of conversation instead of the wonderfully conventional “How was your day, dear?” or “What would you like for dinner?”

Underneath the enormity of this shift, some couples find that the relationship-building work they have done for years is there to support them. They can be partners in crisis just as they have been partners in life all along. Other couples find that the health crisis slices through the fragile ties that have held them together and that without the familiar routines to buoy them, they flail.

However, no matter how strong the relationship structure, illness creates new rents or widens existing cracks. Why is this? Because on some level illness makes us children again and then takes away the promise of “happily ever after.” Both partners are hurting and scared and want someone to make it better. Both are facing loss and abandonment and want someone to make it stop and to tell them that it will be all right. And that cannot happen. Even with physical recovery, the sundering caused by illness leaves its stains.

It is awful to look at the face of your sweetheart and see pain, fear, and helplessness when what you want so badly is to have it back the way it was. Some couples can find and hold each other with understanding and compassion. Some couples direct their rage against the seemingly omnipotent enemy, illness, against each other, and demand from each other the fortitude illness has taken away.

And all this turmoil is backdrop to the daily demands of dealing with a health system in crisis. Couples still have to deal with making appointments, finding specialists, researching new treatments, taking new medications. And the demands of ordinary, daily life don’t wait either. Children need new school clothes, groceries must be bought, and the office still expects you to do your job. Can you feel the pressure building?

How can couples deal with all three intersecting tensions -- daily life requirements, illness demands, and erupting emotional issues. One answer is they can't. Not alone. It takes a village to help a couple dealing with serious illness manage the daily tasks, the medical choices to be made, and the emotional upheavals. Neighbors, friends, and family (if you're lucky) can be enlisted to chauffeur the kids, do grocery shopping, rotate cooking dinners. A trusted companion can sit with the ill partner when the well partner needs a break. I, thankfully had my beloved friend, Tom, "Barbara-sit" when Richard needed to see the opening of the first Lord of the Rings movie. And I have participated in cooking brigades when an ill friend and her partner were too exhausted to prepare anything more demanding than cheese and crackers.


In the next installment on the topic of Roles and Illness, I will offer some more suggestions of things the couple can do themselves to help each other cope.

Relationship roles and Illness: What Happens to the Partnership?

Part 2 in a 4 part series on Relationship Roles and Illness

How do roles get determined in the couple relationship? Do we chose a partner who is like our idealized parent or like the flawed parent; like ourselves or very different from ourselves? I think whatever our initial reasons are, as the relationship evolves we find surprises that challenge us. As we grow beyond the initial intoxication, we bump into disappointments. How we move through those disappointments determines our future. We either stay stuck, repeating the same arguments over and over; or we stretch in our ability to listen without blaming and to love even when feeling wounded.

I have come to believe over the years that, as my relationship endures and deepens, I chose Richard because we are so different. His nature is exactly what I needed to catalyze me into driving toward becoming my fullest self. His belief in the basic goodness of the universe calls on me to challenge my self-protective distrust that things won’t work out unless I intervene. His slower, Southern pace and alertness to the beauty of small things reminds me to stop racing by the moment in pursuit of a better tomorrow. I have taught him about the world of emotions, and he has shown me equanimity.

Like all couples, we fell into patterns and came to rely on the complementarity and predictability of each other’s roles. One shops; the other cooks. One researches; the other negotiates. One analyzes; the other intuits. One grooms the dog; the other prepares her food.

But when one member of a couple becomes ill or incapacitated, this equilibrium and the unspoken rules that govern it change, forcing partners to assume new roles and behaviors, to learn new lines. Typically what was once a relationship of equals becomes one of caregiver and patient.

How can a couple achieve a new kind of balance - one that accommodates to the reality of the illness but also maintains a partnership of equals? Is this even possible?

A Story About Uterine Cancer & Relationship Roles: Susan and Charles

This begins a 4-part series on Relationship Roles and Illness.

Illness is an amplifier – enlarging existing relationship patterns and boosting the complexities. Illness forces awareness that might otherwise go unnoticed for years. In every activity– to hold, to feed, to acquiesce, to argue, to seek outside help - the couple looks into the mirror of their relationship. And often, illness forces decisions that change the nature of the relationship.

Susan and Charles both had a previous marriage and children. They had been living together for many years and had settled into a comfortable pattern in which Susan controlled and Charles accommodated. This was a satisfying arrangement and suited Susan’s outgoing, decisive nature and Charles’ restrained, more placid personality.

After ten years as committed partners, Susan was diagnosed with uterine cancer and had a hysterectomy. Susan’s recuperation was long and difficult, and she could not continue to oversee the tasks and patterns of their lives with the degree of vigor she had prior to her cancer. Initially, Charles responded by accelerating his attentiveness and taking on more responsibility. The situation changed dramatically when Charles’s demanding teenage daughter came for an extended visit.

Swept away by the waves of his daughter's adolescent antagonism, Charles reverted to his customary, more passive stance and expected Susan to return to her "take charge mode." Susan, however, was still too debilitated and wanted to continue to be taken care of. The conflicting role needs of the couple collided repeatedly until a crisis point was reached. Susan insisted that either Charles' daughter leave or she would. The daughter left, but the rift in the couple relationship remained, and Susan and Charles decided to separate.

After several months apart, Susan and Charles reconciled, but they realized that things could not go on as before. They needed to create a better role balance in their relationship. With the help of a good couple's therapist they worked on equalizing the relationship load. Now, they each carry a more even share of responsibility and consciously nurture each other.

They were committed, and lucky. Susan seems to be recovering well, and their relationship had enough elasticity in it so that it could stretch to accommodate changing needs. This is not the outcome for all couples -- especially when the illness is very long-term and leads to permanent impairment or personality changes .

Do We Really Know What Makes Us Healthy? No! So What Can Couples Do?

This past Sunday’s New York Times had a very meaty article that was both disturbing and comforting – “Do We Really Know What Makes Us Healthy?” The main premise is that epidemiological studies can be so fraught with bias, assumptions of correlations, incorrect correlations, and short-term vision that it becomes almost impossible to know what studies to believe. And therefore, it becomes very difficult to know what advice to follow. The long, sad story of HRT (hormone replacement therapy)– initially a cure for aging for women and ultimately thought to be a precursor to increased risks of heart disease, stroke, blood clots, breast cancer and perhaps even dementia --- is a brilliant example of well-intentioned research gone wrong in the end.

But how is one to know what to trust when it comes to medical advice? The author, Gary Taubes, writes, “All of this suggests that the best advice is to keep in mind the law of unintended consequences.”

For a couple holding hands and wandering through the snaky corridors of medical information, it is so easy to get lost. Especially if the health condition crosses the boundaries of several medical disciplines (like chronic pain, back pain, diabetes, fibromyalgia, headaches, and more), the couple is likely to hear not only more information than is comprehensible, but information that may be contradictory.

In seeking help for my chronic pain, one physical therapist who specialized in pelvic pain told me never to bend backwards, while a myo-fascial physical therapist told me never to bend forwards. Vertical or horizontal were the only positions left – neither one tolerable for too long.

While it is disturbing to hear that we can’t really know what medical advice to trust, it is also comforting to realize that this failing returns a good chunk of responsibility for decision making to the patient and the partner. We can feel empowered to voice our concerns and bring our intuition back into the treatment room.

A STORY:

I waited three months for a follow up appointment with the chief of neurology at a renowned hospital. He had me put on a gown and told me to lie on my stomach. Richard was seated in a chair nearby. As I was automatically moving into place I asked him what kind of exam was he going to do. He replied that he was going to do an epidural to test my spinal fluid for signs of infection, since that was one of the few test left undone. I sat bolt upright and started asking questions about the procedure, its risks, and the likely outcome given my medical history. His responses made the test seem much less appetizing. But here I was gowned and ready. And here he was, credentialed and authoritative. How dare I resist!

Luckily, Richard was there. And this is a grand advantage of going through the medical maze with a partner. Richard was able to hold up the stop sign and voice what I had been feeling but was too stressed in the moment to say – “It sounds like we have some doubts about the procedure and aren’t ready to go through with it today.” I could breathe again.

His intervention also opened up a line of questions I didn’t have the perspective to consider. I now place these questions among the top ten to always be asked:

• What will happen if we wait a week? Two months? Six months? A year?
• Are there any alternative ways of getting the same information?
• What symptoms should we be on the look-out for that would indicate that we should have the procedure done right away?

Making medical decisions is one of the arenas where couples can collaborate brilliantly and use the wonderful advantage of having a listening/sounding board immediately at hand. Even if the relationship is strained and torn by heated issues, couples can try to declare an emotional moratorium in order to work together and bring their combined intellect to bear on treatment decisions.

Ultimately, the decision to take the meds or go through the procedure is the patients; and the patient must rely on his/her trust in the doctor weighed alongside of his/her own research and intuition. The partner can be the voice of gentle challenge to the doctor and to the patient, and can infuse the equation with her/her own research and intuition. This is a situation where two loving heads can truly be better than one frightened, overloaded one.

For Younger Women with Chronic Health Issues

I recently started reading a website that provides an online community for younger women with chronic health issues who want to be their best. The founder of ChronicBabe.com, Jenni Prokopy, was diagnosed at the age of 25, with fibromyalgia. Soon after came diagnoses of asthma, anxiety, Raynaud's phenomenon and GERD. Young women coping with chronic conditions just as their adult lives are really getting started face complicated issues. Jenni's mission is to help women feel in control of their lives in spite of their health situation. While the site has compelling stories and useful advice for younger women, I think anyone can benefit from having a read.

Here are a few recent article about love and chronic illness

Do You Want to Know Your Medical Prognosis?

When doctors don’t tell you the bad news, it can make life even harder. The author of this New York Times article (Nicholas A. Christakis, a physician and a professor of sociology at Harvard) makes the case that giving a terminally ill patient a realistic assessment of how long he/she has to live can be vitally important. It can give the patient time to take care of the practicalities, speak what needs to be said, and be in charge of end-of-life medical decisions. Doctors often fear that telling a patient he/she has two months to live will strip away the patient’s investment in life. Dr. Christaki writes, “It should only refocus attention on the quality of the patient’s life. Sometimes living life to its fullest requires knowledge of its finitude.”

I take a pretty hard line about this issue of don’t tell. I don’t think any medical person (or family member) has the right to censor my health reality, even in the name of kindness. Whether the news is about how much time I have or how much functionality I’ll have – I want to know. Even if I don’t want to know, I need to know. The labyrinth of life is tangled enough without false exits being offered. I want to walk it carrying whatever my load is.

Richard was aware of my need for complete and accurate information; and he had the same need. We discussed whether he would accompany me to appointments with specialists and decided that four ears were better than two. We asked questions from different perspectives and remembered responses the other sometimes forgot. We both found this to be a very useful form of partnering.

Prognoses of death or limitation are not the end. While the final certainty of loss is unavoidable as we age, with the truth as catalyst, who knows what new paths any one of us may create, even in the last moments of life. My pain brought me my dog, yoga, a few glowing embers of spirituality, and strangers who, surprisingly, became beloved allies.

What is your stance on the issue of to be told or not to be told?

Have you faced the situation of having to decide whether or not your partner should be told the medical truth? How did you handle it?