Rear view photo of two friends sitting together on beach at sunsetDo you have a friend who is diagnosed with a chronic illness? Having a chronic illness can present any number of challenges for the person who has been diagnosed. Some of these challenges may be realized by the loved ones of the person with the illness. At times, these issues also may have some impact on the lives of the people close to the person with the illness.

If you are close to someone who has a chronic illness, you may be very aware of the above. You might also, despite knowing none of these difficulties are the person’s fault, become frustrated with them from time to time.

If you do, it’s okay to admit it. You are not alone in your feelings.

Let me tell you about my good friend Sarah. We met three years ago working at a coffee shop. She is outgoing, intelligent, and driven, and we immediately hit it off. However, Sarah was diagnosed with both fibromyalgia and chronic migraines. Her symptoms flare up unpredictably, and as a result, she has trouble holding a full-time job. In fact, she lost the job at the coffee shop because she couldn’t keep up with her scheduled shifts. When she was fired for absenteeism, I felt bad for her, but to be honest, I was also relieved. Since she called in sick so frequently, coworkers, myself included, were asked to fill in for her, which disrupted our own personal schedules. Needless to say, that was difficult for all of us. [fat_widget_right]

Sarah also battles depression and anxiety related to her diagnoses. I personally can’t imagine what it’s like to live with chronic illness, but I can see how it can be depressing not being able to meet the goals you set, or frequently needing to change plans at a moment’s notice to deal with a flare-up of illness. Sometimes Sarah is too sad to get out of bed and cancels our plans. At other times she’s so anxious it makes her physically sick. Often she’s stuck in her head and doesn’t ask about how I’m doing. While I understand coping with all of the things she experiences must be difficult, it’s very frustrating when she cancels plans at the last minute or spends most of the time, when we do get to spend time together, discussing the physical difficulties she’s currently experiencing.

We show our friends we love them by offering support and our care, but we can’t forget to show love to ourselves by taking care of ourselves at the same time.

I want to support my friend, both in general and through her struggles. Our friendship is too important for me to give up. But I do also want to feel heard and encouraged by her. So as awkward as it was, I initiated a frank and open conversation. Together, we decided the following guidelines could help us both cope with her chronic illness:

  1. Be a good listener. While I’m willing to listen and give Sarah support when she faces challenges, I also want to share my thoughts and feelings and be heard by her. Sometimes I just need to ask bluntly for her ear, but she appreciates it when I do and admits that listening to my problems helps take her mind off hers.
  2. Be flexible. This is a tough one sometimes, especially if Sarah cancels plans at the last minute. I’ve learned that’s it’s all right to admit I’m disappointed. But it was also important for her to know that canceling plans is not a friendship-breaker. It’s important that we reschedule any canceled dates, but I also follow through with our original plans, even if it means going alone. This helps me not feel resentful about not being able to do what we had planned.
  3. Be informed. Before meeting Sarah, I had no idea what fibromyalgia really was. To be completely honest, I thought it was a made-up disease. But after reading clinical articles about it and attending a medical appointment with Sarah, I was better able to better understand how this “invisible illness” affects her life. It helped me learn not to blame her when she canceled our plans.
  4. Be mindful. We carefully word the questions we ask each other, using open-ended questions rather than ones that can be answered with a “Yes” or “No.” By doing so, we keep the lines of communication between us open and can get a better understanding of our situations in the moment. I also make sure to remain mindful of how I’m feeling. When I am having a rough day or week and communicate that, I feel better about being able to focus on my own needs.
  5. Be honest. Honesty is always the best policy. If Sarah doesn’t feel up to walking around a museum for several hours, then I want her to tell me that. Otherwise, neither one of us will enjoy the date. Likewise, I need to be open with her if I’m feeling frustrated or unheard by her. It isn’t easy to have these kinds of conversations with anyone, but Sarah and I have found that doing so helps us maintain a healthy friendship.

I have found having a friend with a chronic illness to be both a blessing and a challenge. Chronic illness will affect Sarah forever, so as long as we’re friends, I’ll be affected too. Sarah has opened my mind to diagnoses I didn’t know existed, and that has helped me be more understanding of the many challenging situations other people might also be experiencing. My friendship with Sarah has also helped me learn to more effectively identify and understand my own needs. I have also come to better understand just how important it is to maintain open communication and focus on self-care.

We show our friends we love them by offering support and our care, but we can’t forget to show love to ourselves by taking care of ourselves at the same time. If you would like help exploring ways to prioritize self-care or work on communication, a qualified and compassionate therapist or counselor is always a good resource.

References:

  1. Metzger, C. (2016, July 22). Have a friend with chronic illness? Here are 10 ways you can help. Huffington Post. Retrieved from https://www.huffingtonpost.com/entry/have-a-friend-whos-chronically-ill-here-are-10-ways_us_57866e23e4b0e7c8734f4804
  2. Renee, B. (2017, November 10). 9 ways to better support someone with chronic illness. The Mighty. Retrieved from https://themighty.com/2017/11/supporting-friends-with-chronic-illnesses

Mature woman and adult daughter sit close to each other with sad expressions on their faces. Younger woman is holding her mother's hand.Whether out of obligation or out of a caring heart, more than 65 million adults in the United States take care of an elderly, chronically ill, or disabled loved one. Most of these ailing adults want to continue living at home as they age and their health declines, rather than in an assisted living situation like a nursing home. Because resources are more abundant now for in-home care, “aging in place” has become more common.

If you’re a caregiver in this situation, chances are you’re prioritizing care of another person over your own needs. You might be losing sleep and feeling fatigued or distracted. It could be you find yourself losing your temper easily. There’s even a possibility you have lost friends or are facing new financial struggles because of your caregiver role. All of this might leave you experiencing overwhelm.

Is it possible to care too much?

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The answer is yes. This “caring too much” can be described as “compassion fatigue.” Compassion fatigue, a stress condition marked by a gradual decline in compassion and empathy toward others, often affects people in professional health care positions. But it can also happen at home when a well-intentioned caregiver overexerts in helping a person with a chronic illness or disability.

Compassion fatigue is different than burnout. When a caregiver is experiencing burnout, they have all but lost the ability to empathize or give care to others. Compassion fatigue happens when we help others who are in stressful situations, and burnout originates from occupational stress and being overworked.

Signs and Symptoms of Compassion Fatigue

Caregivers tend to experience compassion fatigue rather than burnout, although in severe cases, caregivers can experience burnout too. Some signs of compassion fatigue include:

Because people in caregiver situations often feel compelled to continue this role, they could be at risk for compassion fatigue. Learning to recognize and manage the signs and symptoms above effectively is imperative if you want to continue caregiving for your loved one. If ignored, these emotions and symptoms can intensify, and can eventually lead to more serious mental and physical issues.

5 Tips for Fighting Off Compassion Fatigue

If you believe you are at risk for compassion fatigue, it is not too late to stop the progression. Here are five tips for self-healing:

  1. Get enough sleep: You will likely have more energy and sharper thinking when your body is well-rested. This might mean engaging home health care services or a sitter to be with your loved one through the night while you rest. It may help you recharge and feel ready to take on a new day.
  2. Eat nutritious food: When we’re in a hurry, we tend to eat whatever is easy, and those choices aren’t typically wholesome. Unhealthy food (including drugs and alcohol) can leave us feeling sluggish and bloated, making it a challenge to be active and effective. Meal planning for the week can be a helpful way to stick to a healthier diet. Skipping alcohol and choosing water will likely help cleanse and rejuvenate your body.
  3. Get moving: While it may seem selfish to take time out of caregiving to exercise, the fact is exercise can boost your immune system, increase the “feel-good” chemicals in your brain to fight off depression, and relieve physical stress. Sparing even 20 minutes a day can be beneficial both physically and mentally.
  4. Enlist the help of others: Solo caregiving is asking for trouble. It is nearly impossible to care for another person 24/7 without aid. Asking a family member or close friend to take your place for a few hours, or enlisting home health care may give you some respite time to care for yourself. Your support system is crucial to your survival!
  5. Practice boundary-setting: Know when caregiving is too much and when you need to ask for help. Even if your loved one prefers your care to someone else’s, be aware of your limits and say no when needed. Express your own needs and concerns with others.

If you are on the downward spiral of compassion fatigue, seek the support of a licensed therapist and start caring for yourself, too. As American author and teacher in American Theravada Buddhism Jack Kornfield wrote, “If your compassion does not include yourself, it is incomplete.”

References:

  1. Signs of caregiver burnout and how to prevent it. (n.d.). Retrieved from https://www.vitas.com/resources/caregiving/signs-of-caregiver-burnout
  2. What is compassion fatigue? (2013). Retrieved from http://www.compassionfatigue.org/pages/compassionfatigue.html

Young parent kneeling on path near grassy lawn holds arms open for toddler to run intoWhat are your core values? Can you state them without thought?

A better place to begin might be, What are core values?

A core value can be considered a life direction, an internal compass that serves to guides us throughout our lifetime. Our values mold who we are and help point us in the direction we want to take in life. According to Russ Harris, therapist and author of The Happiness Trap: How to Stop Struggling and Start Living, values are what we want our lives to be about, deep in our hearts. Values—which vary from person to person and may change over time—include ideals like trust, love, success, wealth, freedom, health, and adventure.

Some of us may have identified our core values but experience challenges or barriers of some sort in moving forward with them. For many, chronic illness may be one of these barriers. Many of the people I work with in my practice who have a chronic illness experience an internal battle between their core values and what their bodies will allow as they attempt to work to establish these values in their lives. [fat_widget_right]

Allison,* for example, is in her early twenties. She recently married, and she and her husband had planned on having children soon after their wedding, but instead Allison received a cancer diagnosis. Without hesitation, she went through the necessary therapies to treat the cancer, but unfortunately these treatments left her unable to conceive. “I want to have children, but I can’t because of my illness,” she sobbed in one session.

Allison values family, but her plan to have children was waylaid by cancer treatment. “I’m so disappointed and sad,” she disclosed, tears streaming down her face. “This isn’t where I thought I would be at this point in my life.”

Allison and I began to address this by first paring down her value list to her top three—love, family, and health— in order to help her come up with some committed action steps to help move her forward. While she cannot become pregnant herself, she can adopt children to start her family. To this end, she and her husband have begun the adoption process by going to informational meetings, saving money, and interviewing different adoption agencies.

Sometimes Allison has to sit with the feelings of sadness and grief, accepting the temporary pain with the knowledge that the feelings will pass. But she also knows that if she continues to move toward her values through committed action, she will indeed find a life filled with love, family, and health.

Determining Our Core Values

How do we determine these values for ourselves? And once we have done so, how do we take action in our lives to implement them? It’s not all that easy to do, but it can be life-changing! There are lists of core values available online, but you can also make a list for yourself.

When you have a list, further whittling it down to the top three values is next. This process, which can be an interesting and insightful one, is important, because it may be too overwhelming to find direction if we have too many core values. Like the old adage says, “The hunter who chases two rabbits catches neither.”

Once we have identified three top core values, we can move forward. Proactive behavior moves us in the direction of our values. If we find we value adventure, making plans to travel someplace new could be a “moving toward” behavior. If health is one of our core values, eating more nutritious food, exercising regularly, and practicing self-care are some committed action steps we might take.

Along the way, we might notice certain distracting behaviors that move us away from our values, rather than moving us forward with them.

Learning to be observant of our behaviors can help us catch ourselves when we’re moving away from our values and get us back on track.

Behaviors that sidetrack us might include:

When we get caught up in these behaviors, our values are waylaid, and ultimately, we are left feeling unsatisfied. Learning to be observant of our behaviors can help us catch ourselves when we’re moving away from our values and get us back on track. (Any of these behaviors might also be indicative of an underlying concern, though this is not always the case. It can be helpful to raise these concerns, and others that may impact daily life and function, with a mental health professional.)

Sometimes even ordinary illness or fatigue can get in the way or slow down the process of moving toward our core values, and coping with a chronic illness can make a person’s quest to attain their values particularly challenging. However, because our values are ever-present in our lives, we can always commit to some kind of action steps, even if they are small.

What kinds of distracting behaviors are keeping you from moving toward your values? Acceptance and Commitment Therapy (ACT) is one approach that can help us identify our values and make a commitment to taking action steps. I believe that doing so can ultimately help bring meaning to life, even in the midst of chronic illness.

What’s stopping you from living a rich and meaningful life?

Editor’s note: Names in the preceding article were changed to protect confidentiality. 

Reference:

Harris, R. (2008). The Happiness Trap: How to Stop Struggling and Start Living. Boulder, CO: Trumpeter.

Two businessmen talking seriously, blurred focusJake, who has been seeing me for therapy for some time, is sliding further into depression. He is struggling to get up in the morning, complete daily living tasks, and concentrate at work. Jake needs to take some mental health days off to stabilize his mood, but he’s unsure how his employer will handle his request.

Also working with me in therapy is Sarah, a person with a chronic illness who is unemployed but wants to work part-time to contribute to her family. She experiences unexpected pain and fatigue that can be debilitating, sometimes confining her to bed all day. Sarah isn’t sure if she should tell her potential employer in the interview about her condition, fearing she will not be hired.

Does either of these situations resonate with you due to a mental or physical diagnosis? Are you afraid to tell your employer about your condition out of fear you will be treated unfairly? If so, you are not alone. Many people with chronic conditions face this dilemma.

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Should You Tell Your Employer?

How do you decide whether to tell your employer about your diagnosis? Certainly, there are risks to disclosing; you leave yourself vulnerable to those around you and risk being treated differently or unfairly. But there are dangers to not telling, too. If you don’t disclose your condition’s symptoms to your employer, you run the risk of being seen as incompetent or lazy at your job, which could lead to negative consequences. And if you don’t disclose important information, you may not be protected legally in the event of discrimination.

What are your rights, you ask? The Americans with Disabilities Act (ADA) protects you from any potential consequences and requires employers to make reasonable accommodations for anyone with a condition it defines as a “disability.”

Certainly, there are risks to disclosing; you leave yourself vulnerable to those around you and risk being treated differently or unfairly. But there are dangers to not telling, too.

The term “disability” is defined by the U.S. Department of Labor as:

Likewise, a mental health disability is “a mental impairment that substantially limits a major life activity.” Some common mental health conditions include depression, bipolar, posttraumatic stress (PTSD), obsessive compulsion (OCD), panic, and schizophrenia.

Common challenges include:

Ultimately, disclosing your disability to your employer is a personal decision. It might be helpful for you to find support in making this decision. Your choice to tell can change depending upon the situation and the need for an accommodation. If you decide to tell your employer about your condition, do so in a way that feels good for you; share as much as you think is necessary with those who need to know.

Note: To protect confidentiality, names in the preceding article were changed by the author.

References:

  1. Tugend, A. (2014, November 14). Deciding whether to disclose mental disorders to the boss. The New York Times. Retrieved from https://www.nytimes.com/2014/11/15/your-money/disclosing-mental-disorders-at-work.html
  2. United States Department of Labor. (2016). Entering the World of Work: What Youth with Mental Health Needs Should Know About Accommodations. Retrieved from http://www.dol.gov/odep/pubs/fact/transitioning.htm

Cropped shot of a couple in a coffee shop, focus on hands and cups of coffee on tableA 28-year-old woman sits across the room from me. Recently diagnosed with bipolar, she is slowly but surely accepting her diagnosis. With a perplexed look, she asks, “But what, exactly, am I supposed to tell guys when we go out? And when should I tell them? And do I even need to tell them at all?”

If you have a chronic illness and are in the dating world, these questions may sound familiar. Whether you have an “invisible” condition (think arthritis, HIV, diabetes) or a chronic mental health diagnosis (think bipolar, obsessive compulsion, major depression), it can be difficult to know when or how to disclose sensitive information about yourself to romantic prospects.

The realm of online dating has brought about fast and efficient ways to meet new people. Online dating can take away some anxiety and stress when meeting others, and it can open up a world of possibility. Online profiles generally allow users to disclose as much or as little as they want. Similarly, users can often make checklists of must-haves and deal-breakers. So you may put it out there that you don’t want to date someone who smokes, but do you want to tell the dating world about your battle with fibromyalgia?

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People who have been rejected by friends and family because of their diagnosis may feel even more anxiety when it comes to sharing it with a date or potential date. It’s a quandary, no doubt! So how do you decide when to tell a prospect about your diagnosis?

Perhaps these guidelines can help you navigate the world of dating with a chronic illness:

  1. Inform yourself about your condition and find acceptance. First and foremost, educate yourself about your diagnosis and empower yourself in your treatment. Once you have accepted your condition (at least on most days!), your confidence and self-love will shine through to others. If you need help with this step, find a therapist who can help you move through the stages of grief when it comes to chronic illness.
  2. Know what you want and what you need in a partner. You are not looking for a caregiver here. You want a partner who will physically help you when needed, one who will be supportive and understanding, and one who is empathetic to your condition. Don’t settle for someone who can “put up with” you. Look for someone who will accept and love you for who you are. Remember the 80/20 rule of relationships: you get 80% of what you really want. Maybe your new date doesn’t like hiking or going to the movies, but the 80% of things you do have in common is really great.
  3. Share your information thoughtfully. In other words, don’t dump out your purse or pockets on your first date. Think about the important facts of your diagnosis and be able to share them in a succinct way. If your new date has questions, answer them accordingly. If not, that’s OK, too—some people need time to process or may not, in fact, have any questions. Allow the other person time to digest the information, and be open to answering questions if he or she wants to talk more about it later.

In my experience, the vast majority of people who follow these guidelines when disclosing their chronic illness are welcomed with open arms. It’s a rare occasion when a new person is turned off by this kind of disclosure, but if it happens, then he or she simply isn’t the right person for you.

Think you want to share your chronic illness with others on dating websites? There are dating sites, such as PositiveSingles.com, NoLongerLonely.com, and Prescription4Love.com, that cater to people with chronic medical and mental health conditions. The idea behind these sites is that you will be in good company and can more openly talk about your experiences with others who understand.

envious girl with mom and sibling in the backgroundWhen a family member is diagnosed with a chronic illness, he or she is not the only person who has to deal with the diagnosis—the entire family is affected by it. Think of a car: every part has to work properly and in conjunction with the other parts in order to run smoothly, right? Something as simple as a flat tire can cause the entire system to slow down. The family system is like that car. Each member has roles and responsibilities, and when one person has a medical diagnosis, it can throw off the entire system.

So when a child is diagnosed with a chronic illness, the entire family system is affected. Having a child with a chronic illness can be difficult for everyone. Managing schedules and doctor appointments, going to different therapies, and dealing with sudden changes of symptoms can be exhausting for the child with the illness as well as for the parents.

But what about the nondiagnosed siblings? How are they affected? Family routines and dynamics can drastically change when a child is diagnosed with a chronic illness. This change can affect the nondiagnosed siblings in different ways. Some normal emotions for nondiagnosed siblings include:

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What can you do as a parent to help your nondiagnosed children cope with their sibling’s illness? Here are a few tips:

Express Feelings

Encourage your kids to talk about their feelings, even when it’s not so positive, and validate them when they do open up. Model this behavior by expressing yourself in a truthful and age-appropriate way to your children.

Maintain Rules

Keep your family rules intact. Many parents feel guilty enforcing rules when there is an illness, but structure can help children know what to expect; it helps them feel safe.

Include Siblings

Do not allow siblings to be caretakers per se, but invite them to doctor or therapy appointments when possible. This can help them understand what your diagnosed child is going through.

Stay Active

Although some extracurricular activities might have to be altered, it’s important to find doable hobbies in which everyone can participate. Being able to enjoy the fun things in life can help the family cope better and feel “normal.”

Make Time

The diagnosed child gets a lot of your undivided attention. Be sure to take time out for your nondiagnosed children, too. It will help them know that they are still important to you.

It’s not always easy to see when a nondiagnosed child is struggling because he or she doesn’t always know how to express feelings. A few things you can look for are changes in sleep, mood, or appetite. You should also be aware of regressed behaviors or changes in school functioning. If you see these changes consistently, consider seeking the assistance of a therapist to help the child cope more effectively.

Important Notice

GoodTherapy is not intended to be a substitute for professional advice, diagnosis, medical treatment, or therapy. Always seek the advice of your physician or qualified mental health provider with any questions you may have regarding any mental health symptom or medical condition. Never disregard professional psychological or medical advice nor delay in seeking professional advice or treatment because of something you have read on GoodTherapy.