The uninvited house guest often stays on well beyond the point of “wearing out his or her welcome.” Likewise, for many people, chronic illness/disability is not a short-term inconvenience but rather a long-term, often permanent way of life. In the early stages of adaptation, the changes that happen in our lives and families may seem tolerable—at least while we still think there is a chance that the diagnosis is wrong or the cure is in the magic pipeline offered by big pharma.
Eventually, denial and bargaining give way to anger and depression. The uninvited guest is still ever-present, and no amount of cajoling or suggestions result in change. Bouts of anger may become a way of life for a while.
Many people flow in and out of anger and depression, rather than progressing neatly through one stage and into the next. It is often said that depression is anger turned inward, which makes expression of anger in a safe and effective way very important. Getting adequate support from formal and informal support networks is critical.
It is not unusual for tempers to flare and fuses to shorten during this period of adjustment. People who are typically long-suffering seem to be constantly on edge; those with fewer coping skills may be in a chronic state of agitation and irritability, if not outright rage. It often seems as if they are pushing away those who are closest to them at the time when they need them most.
Loved ones may unconsciously spend less time with the person who seems to find fault in their best efforts. Children are often left confused and afraid. Doctors and other providers frequently find themselves being blamed for their inability to help. This is all part of the process of adaptation.
While most people understand cognitively that their loved one is struggling and coping as well as can be expected, their own feelings of inadequacy and powerlessness may lead them to retreat on some level—if not physically, then emotionally. This often feels like abandonment to the person who is already overwhelmed by disability or illness. It is very important for caregivers and loved ones to be aware of their own feelings and find support.
Coping skills: Separate the person from the behavior. Try to remain aware of the real target for your anger—the illness or disability, not the person in your midst. Remember that we often treat those we love the most with the least respect; make amends as soon as possible if you do so. Give each other a break and extend the benefit of the doubt when possible. If your loved one treats you badly, remember that everyone is under extreme stress and doing the best they can at that moment. It is also good to remember that your caregivers and medical providers are probably not inadequate, but the resources they have to work with may be.
Caregivers and loved ones should speak up if they are being treated badly. Being sick is not an excuse to mistreat people, particularly if there is a pattern of abusive behavior developing. These behaviors need to be identified and discussed in a calm, loving way (not in the heat of the moment). This may require professional help, or perhaps the assistance of a minister or family friend who is not emotionally involved.
Most of the time, the person who lashes out or treats people badly feels guilty and needs the opportunity to make amends. For those who are unaware of how their behavior comes across, specific examples of the unacceptable behavior or hurtful/abusive language helps them develop a better awareness of their inappropriate behavior. In some cases, this is a manifestation of the illness or disability. In others, it may be the result of coping skills that are maxed out. Either way, left unattended, it usually gets worse. This is not the time to let conflicts and hurt feelings stack up. If you need help addressing these issues, ask your medical provider for a referral. Providers often have therapists or chaplains they work with who may be able to help.
Depression often occurs during the adaptation process, and may happen at other times or continue. Clinical depression can be very difficult to manage. It is more than sadness or disappointment; depression is a collection of symptoms that exist most days for two weeks or longer and create some level of impairment in daily functioning. The symptoms may include many of the following:
- low energy or agitation/irritability
- loss of interest in things previously enjoyed
- problems with concentration/foggy thinking or trouble making decisions
- changes in sleep or eating patterns
- feelings of guilt or worthlessness
- thoughts of death or suicide/not wanting to live
- rumination/negative thinking
- others (physical pain, changes in motor skills, etc.)
If you or someone you know have four or more of these symptoms that are present for more days than not over a two-week period, talk to your medical provider about getting help.
There is also a type of depression called situational depression that is a normal reaction to a loss or change. Almost all people with chronic illness or disabilities and their loved ones experience this. The same symptoms are involved, but the symptoms may not be present most of the time, or may not be severe enough to impair your ability to function (relationships, work, taking care of your kids, etc.).
Situational depression can linger or become more serious after a while, becoming clinical depression. If the symptoms begin to impair functioning or last longer than a few weeks, it is wise to speak with a medical provider or therapist. People with situational depression are often able to experience periods of happiness when receiving good news, or other momentary reprieves from the darkness of depression. Those with clinical depression may be unable to experience even brief moments of relief when the situation calls for it.
The best treatment for depression is believed to be a combination of talk therapy, exercise (I know—it is very hard to exercise when you are depressed), a good diet, and medication, if deemed medically necessary. The right intervention for depression depends on which type of depression you are experiencing. For those with a few symptoms that are not present all the time, self-help may be sufficient. People with four or more symptoms that are present most of the time probably need to see a therapist and possibly a psychiatrist.
Anyone who is suicidal should seek professional help immediately. This national hotline is for people struggling with depression. The crisis line is staffed 24 hours a day by trained volunteers: 1-800-273-TALK.
Coping skills: I recommend that people talk with a therapist when dealing with situational depression and try to get as much activity in as possible. This may mean simply walking outside to get the mail, sitting on the porch for 20 minutes to have a cup of coffee or juice, watering the plants, or walking the dog. Sunshine is another natural remedy that increases vitamin D, which is often deficient in people who are depressed and those who do not go outside often. Eating properly is also critical, and there are natural supplements available at your local health store that may help with situational depression. Talk to your medical provider or therapist about these options.
Support groups and self-help groups can be very helpful. Groups provide a great resource for people living with chronic illness and disabilities and their loved ones. You can find online and local resources, and most are free. Many are affiliated with local hospitals or nonprofit agencies that serve people with chronic illness or disabilities.
If depression is serious enough to impair functioning, or you/your loved one has thoughts of suicide or not wanting to live, it is important to get professional help immediately. Start with your medical provider or therapist unless the person with depression has a plan to cause self-injury or death.
In situations where someone’s safety is at risk, call 911 or the local emergency number for your area, or take the suicidal person to the closest emergency room. Your role in the situation is not to intervene, but to get professionals involved as soon as possible. If the suicidal person is unwilling to go to the ER (or medical provider’s office during business hours) or you believe it may be unsafe to transport them, simply call for the emergency medical providers to come to you.
Don’t worry about the person who is suicidal being upset by your actions—when people are in crisis, they are usually not thinking clearly, so it becomes crucial for you to make good decisions on their behalf. The medical professionals who are trained to help in these situations will make the decisions once they arrive. This will likely mean that the person who is suicidal will be transported to the hospital for an evaluation, and may need to stay there for a few days until stabilized.
Again, it is not up to you to make that decision, only to make sure the person is safe until medical professionals can take over. It is a lot of responsibility and instills fear in most of us, but in the end, when your loved one is thinking rationally again, he or she will likely be grateful. If not, you will know that you have done what you needed to during the crisis.
Ongoing thoughts of suicide or not wanting to live need to be addressed with mental health and/or medical professionals regularly. Some states (Washington, Oregon, and Montana) permit medical professionals to participate in a well-thought-out, documented plan to end life (known as rational suicide), but most do not. Discussion of a patient’s end-of-life wishes should also be considered carefully and documented in a legal document for your specific state. Legal resources such as a living will specifically identify a person’s end-of-life wishes.
It is a good idea to talk about signing a consent form that allows you to discuss your loved one’s mental health (and physical) treatment with medical providers and therapists. This will enable you to enlist their help if depression becomes unmanageable or a crisis occurs. The consent can be relinquished at any time if the patient is considered to be of sound mind, and could be a great resource. Fortunately, resources are available to assist you in being prepared for a suicidal crisis should you need them.
There are many issues to be discussed regarding suicide, including family members’ thoughts and feelings about it. It is important to remember that euthanasia is against the law in all U.S. states, and assisted suicide with the help of a physician who prescribes a lethal cocktail after careful planning and documentation is legal only in Oregon, Washington and Montana. Legal professionals should be consulted if “rational suicide” is something you or a loved one is considering.
Using the analogy of the uninvited house guest, this is the period when people have settled into their routines and learned to live together with whatever adjustments are necessary. The initial period of adjustment after a disability or illness almost always requires going through each of the stages in the process outlined here. It can take a long time for some to arrive at adaptation, and not everyone in a family gets there at the same time. With some luck, a lot of support, good communication, and teamwork, the process will likely resolve in time for most people.
Unfortunately, surviving the initial period of adjustment does not ensure there will not be others. As mentioned earlier, people tend to get emotionally triggered when there are relapses or new symptoms/stages of the illness or disability occur. Triggering means that some reminder of the initial trauma (usually diagnosis or the actual accident or illness) sets off the same cascade of emotions experienced at the time of the original event.
Living in fear of a relapse or a change in physical status creates a certain amount of anxiety for everyone. The unpredictability of living with a chronic illness or disability will be the focus of our next article.
In the meantime, please share below how you have effectively coped with anger and depression.
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