Learning to live with a mental illness is no easy task. Periods of depression make experiencing the depth and breadth of life difficult. Inattention can lead to problems at home and at work.
Many people facing mental illness sometimes feel like it would be nice to find a panacea – the cure-all that will fix their depression/anxiety, mood swings, substance abuse, or attention problems. Oftentimes the reality is a harder pill to swallow – there is not currently a permanent cure for many mental illnesses. Medications, behavior change and psychotherapy can lead to great improvement in symptoms, but frequently the illness will persist to varying degrees. Some psychiatric illness may be temporary or sporadic in duration. In such cases, the illness may never return, or may return only occasionally. However in many cases, these disorders are companions that will stay by one’s side for the long haul. A competent psychiatric professional will be able to help make this companionship an overall positive challenge that provides many opportunities for growth and learning. Sometimes this companion can teach one new forms of compassion, empathy and understanding.
Many people who are diagnosed with a mental illness report feeling isolated because of a perceived stigma against mental illness. However, as a patient with a chronic psychiatric diagnosis, what can one learn from others with chronic disease? Can someone living with cancer or diabetes teach valuable lessons on living with obsessive-compulsive disorder? How can one achieve the best quality of life with a long-term diagnosis? Here are some tips gained from the author’s experience working with patients living with chronic illness of non-psychiatric origin:
* Take time to educate your family and friends.
A young adult with a chronic, incurable, life-limiting disease once told me that her family was the one thing that got her through the truly awful days. When she was too physically weak to care for herself, it was still not easy for her to ask her parents to stay with her and feed her. However, they made the experience dignified and bearable, and helped her maintain her focus and strength. She made a point of educating them so that they were able to act as surrogate advocates when she was unable to do so herself. In your situation, your family or friends may act in this regard too – you must only find the right people for the job and make sure they know how to work with you to achieve the best possible mental health.
As with any long-term diagnosis, there are often misconceptions on the part of the general public – in this case, your family and friends. You must begin by determining which people should be involved in the initial discussion. Your in-depth understanding of your own treatment regimen and health maintenance is a starting point for the conversations that must happen. Not everyone will accept your explanation – but it is helpful to go into tough conversations with an open mind. Some myths may be easily dispelled, others may require significantly more work. In some cases, this may be the hardest part of mental illness, because you can only control your own reactions and emotions.
Each of your loved ones may react differently. As any form of grief, some people will react with denial, some with acceptance, others with bargaining or anger, as discussed in the section on grief. Whenever possible, map out your conversation with a trusted friend or your therapist beforehand. If necessary, write out your talking points. It is important to allow your loved ones their initial reactions, even if you do not share their views. It is helpful to start your discussion with an overview of your illness, what your mental illness means in your life, and how your treatment will continue from this point forward.
You may begin your conversation faced with your loved ones’ misconceptions about mental illness. Your challenge is to elevate their knowledge base gently, and without taking offense at their potential ignorance of your situation. Offer your family members brochures, printed materials, or other information they can use at a later date. Sometimes the emotional impact of learning about a chronic disease can make it challenging to fully appreciate a conversation.
When your treatment regimen is extensive or requires behavioral changes on your part (or theirs), a planning session may be the best way to begin. You must sit down with family and close friends who will be involved in your treatment. It can help to write down a simple, rough agenda in advance and send this out to the attendees. It might help to solicit friends’ and family members’ thoughts on the process to encourage their commitment to your shared goal of wellness. This might be a good time to brainstorm your and your family members’ strengths, so that you can fairly divide up involvement based on different people’s areas of expertise. For example, if you are struggling with depression, asking friends and family to call and check in with you once a week might be a reasonable goal – but make sure to pick a loved one who will be reliable and who will be most helpful to you in that role. Alternatively, a child with a learning disability may require significant involvement to get homework and household chores done. In this case, a family meeting including friends and even trusted neighbors may be appropriate to facilitate the child’s care.
Any time your family or friends are involved in your situation, there is a potential for conflict. Conflict arises when two seemingly incongruent beliefs coexist in a shared situation. Sometimes it is helpful to allow your loved ones to voice their concerns or anger. A loved one may lash out, or feel that your behavior has caused the problems at hand. This is a normal reaction to feeling a lack of control, but requires some explanation from your part. You are on the path to making a change and working with your mental illness rather than against it. Beware, however, of letting the conversation turn into a rehashing of previous slights or a transit back into comfortable-but-unhealthy familial roles. If the discussion gets out of hand, there is nothing wrong with ending the encounter for the day and revisiting it at a later date.
Regardless of how the conversation occurs, this will be an ongoing process, so keep lines of communication open. A therapist will be able to help you to plan for challenging discussions with loved ones.
* Spend time grieving the losses you have experienced through your illness.
A cancer patient told me that he had lost everything – the use of a limb, his control over his life, his hair, and most importantly for him, his ability to go fishing – and yet, he had never fully grieved any of these losses. He was still in the anger phase of his grief. I often found him raging at his care providers about how he would never again be able to do the things he loved. We worked hard together to find ways he could express his anger in constructive ways, and find the meaningful moments in life. Towards the end of his hospital stay, this patient told me that he felt grateful for the first time in a long time. This moment was only possible by moving honestly through the grieving process.
William Shakespeare wrote, “Give sorrow words; the grief that does not speak knits up the o’erwrought heart and bids it break.” Nearly everyone feels a loss of some kind, ranging from initial shock to grief many years later. Whether it is as a parent, the loss of the life you had dreamed for your child, or whether it is the anticipation of the challenges you may have ahead, you must take time to fully grieve. Kubler-Ross described five stages of grief – denial, anger, bargaining, depression and acceptance. However, grief does not always follow this linear path. It may be cyclical, rapid, episodic, easy or stymied. Finding a path to travel on the hard road of self-acceptance will sometimes take a strong support system. Make sure you talk to your mental health provider if you find yourself having a hard time moving through this process. It is only through embracing the honest and challenging art of grief that one can experience all the mystery and wonder life has to offer in the future.
The result of grieving is often transcendence above symptoms. In many cases, patients find that they are more able to take responsibility for their chronic illness after moving through this process. Taking full responsibility includes proper mental hygiene, but also includes the broad range of self-care behaviors – asking for help promptly when needed, monitoring symptoms, seeking balance, and maintaining a healthy lifestyle.
* Read extensively
Knowledge is power. Successfully living with chronic illness means you must make a habit of learning anything and everything about your disease. Incredible resources are available for free through your local library and even on the internet. One note of caution – make sure you are looking up your information through reputable sources. There is a plethora of information available on the internet, much of which is not corroborated by any professional source. Websites like Wikipedia are not consistently reliable sources. Refer instead to a website like mayoclinic.com, nih.gov or nami.org. The digital age does allow a steady flow of high-quality research to be published as well, some online. In addition, there are quite a few excellent books available on a variety of mental health topics, many of which are reviewed on this and other mental health websites. You can also find a great deal of high-quality information on organizational websites geared towards healthcare consumers, such as www.nami.org. Ask your mental health provider or your local librarian for ideas and articles specific to your situation.
* Turn to Your Faith
The poet Emily Dickinson wrote, “Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops – at all.” Finding a source of strength and hope during an illness is not easy. Even more challenging is continuing to find this hope for days, months and years of challenge. Every faith tradition offers solace to the burdened soul, and those living with a chronic illness may find particular aid through their own source of spirituality. Schedule a meeting with a leader in your faith community to discuss your diagnosis and its place within your faith community. Reach out to others for support – your church, synagogue or mosque may offer a group that helps those with a chronic disease. If they do not, perhaps you could start one.
It is perfectly normal, especially during the grieving process after diagnosis, for you to feel angry at your higher power, or the universe. You may feel that your higher power has abandoned you, or turned their back on you. It is normal to want to ask for divine intervention to remove this challenge from your life. Some people even find themselves rejecting religion entirely and feeling that their higher power has abandoned them. These are all normal emotions and reactions. Your religious leader will be able to work with you, wherever you are in this spectrum of reactions. Through aid from your family and spiritual resources, you may find hope and meaning in the challenges you face.
Link to Carol Watkins’ article on faith and mental health
* Have a sense of humor about your situation!
A female cancer patient I cared for would find the joy in any number of truly challenging situations. When she lost her hair, she would bring in multicolored wigs, or paint her head different colors. When she had to wear a bright orange duck-billed mask out in public, she drew a literal duck bill on the mask and would quack at strangers, often sending them into gales of laughter. When a treatment made her skin turn bright yellow, her family sang songs with her about bananas. Positivity made all the difference for her and those around her in getting through her treatments and recovery. One patient who was losing her hair briefly shaved it into a Mohawk and sent out pictures. Her son was probably one of the few middle school students who could show a picture of his mother sporting a Mohawk.
The well-known traveler and author Kurt Vonnegut once said, “Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning to do afterward.” Vonnegut may have been speaking from personal experience – his son is a prominent pediatrician who has written candidly about his personal battle with bipolar disorder and addiction.
It is easy to think of your diagnosis as a burden. However, there are so many wonderful, creative, and, yes, funny aspects of mental illness. Even the down moments can be times to challenge yourself to find humor in the present moment – sometimes a loved one or close friend can help. The more you can find those moments of joy, the more you can work with your diagnosis as a reality rather than a sentence. A growing body of research now relates laughter to better mental health, as well as improved physiologic well-being. There are many fantastic mental health humor sites on the web – a few are listed in this website’s links.
Mental Health Humor Links:
*Refocus on What Really Matters
Most anyone could use a little of this philosophy in life. Choose to accept daily challenges without letting them obstruct your path towards your goals. This is a powerful tool in the arsenal of anyone with a chronic illness. Some days depression might make it hard to get out of bed, or impulsivity might cause a major social faux pas. A serious bout of mania might lead you to a devastating spending spree, or substance abuse might lead you to a painful change in a relationship with your loved one. Many patients find themselves mired in anxiety or doubt at what they view as the fallout from their mental illness. But just as a Pointillist painting is made up of many small dots, so is life made up of many discrete moments. A blemish on one dot in the painting will not ruin the whole picture. Even major missteps offer opportunities – for growth, education, and new beginnings. The hardest struggles in life can either decimate one’s confidence and will, or strengthen and elevate one for the future challenges. Forgiveness, of one’s self and others, is a vital part of mental health. Mahatma Gandhi asserted that “The weak can never forgive. Forgiveness is the attribute of the strong.” This simple act of patience with one’s current state can be healing.
You have the incredible gift and power of being able to turn your burdens into your teachers. A stumbling block offers the opportunity to revisit one’s deepest held priorities and goals. I often advise my patients to make lists of their life’s primary values. Many people find that their lives do not reflect what is most important, and their priorities require rebalancing. My patients frequently realize that they do not spend as much time “giving back” as they would like. Just as the dots in a Pointillist painting remind us of the discrete moments of life, so does the rich tapestry of color remind us of life’s ups and downs. When months of deep depression lead to an inability to care for one’s self, volunteering of time upon recovery can boost your self-worth and engender goodwill in your community. Volunteerism is ideal for those with an intermittent course of illness, as many opportunities allow minimal commitment. You will reap a major personal reward, and this can strengthen your support network for when you need help later.
Mental illness, like any chronic disease, can be a burden. Adversity can also teach us strength. Rededicating oneself to living a substance-free life every day teaches perseverance. Working tirelessly with one’s child with learning disabilities enhances patience. Attending therapy sessions enables greater insight and self-awareness. Mutually sharing life’s challenges with others allows for understanding.
Each mental illness is a chronic disease with real challenges. It is a hard road, but taking life one day at a time during its toughest tribulations may help to ease the frustration of chronicity. There are millions of Americans grappling with a diagnosed serious mental illness. In every challenge is a new mountain, and at the top of each mountain is an incredible view.