As a therapist, I frequently talk with my clients about their quality of life. In fact, assisting them in increasing their quality of life is often one of our goals. As you might agree, quality of life is an especially important concern and, yes, challenge, for individuals and families who are living with a chronic condition like a bleeding disorder. Agreed?
Now, you may already be asking, that’s a pretty general term so how do you make that an actionable goal. That’s a good question. So let’s take a step back and consider what having quality of life actually means.
Just What Is Quality of Life?
Google provides what I think is a nice overall definition of quality of life:
“The standard of health, comfort, and happiness experienced by an individual or group.”
Three important words here: standard, individual, and group. What that says to me is that quality of life is defined by the individual or the group. Group can include the family the individual belongs to. And standards can vary from one individual or group to the next. Your definition of quality of life may be very different from mine.
To help further define quality of life, let’s take a look at the elements that make up quality of life. These include:
- Your health, of course. I would place that at the top of the list. And keep in mind that health includes both your physical and your emotional health.
- Access to adequate health care, another important topic for members of this community.
- Access to education, something else that we talk about often in the bleeding disorder community.
- Feeling safe and secure, in our homes and in our communities. Just read the news if you have any doubts about how safety and security contribute to quality of life. Your physical surroundings have an impact on your quality of life, like clean water and air.
- Meaningful work, as you define it, is an important aspect of quality of life. Holding a job, or choosing not to work outside of the home. It’s all work. I would include work-life balance here as well. Again, as you define it. Some of us live to work, others work to live.
- Adequate financial resources. Again, this might defined by the individual and family. A livable home and regular meals might be considered necessary for quality of life, it sure is for me. Someone else consider Disney World and a cruise to the Bahamas as necessary for a quality life.
- Social status, might be on your quality of life list, whether that means being considered a leader in your community or being considered wealthy.
- Being able to make your own decisions, or at least to be considered in decisions that are made about you, contribute to quality of life. We talk about this so often with other members of the bleeding disorder community, right?
- Social interaction is to me a really important factor in having a quality of life, and I often talk to my clients about how to increase their interactions with other people. We need other people in our lives: friends, family, community involvement.
As you may have guessed by now, I break down the components of quality of life with each of my clients. We define quality of life based on their vision of their own quality of life. We break down the overall goal of quality of life into realistic and reachable goals and then work on them together.
So, some questions for you to consider: What does quality of life mean to you? Right now, what does your individual quality of life look like? What does quality of life for your family look like?
Chronic Conditions and Quality of Life
Please pardon me while I take a brief moment to preach to the choir.
Let’s be honest with each other. Living with a chronic condition like a bleeding disorder has a big impact on your quality of life, for the family member living with the bleeding disorder as well as other family members. Preventing bleeds and responding when they occur. That’s a starting point. But also dealing with healthcare providers and insurance companies or Medicaid. Copayments. Vacations versus staycations. Household chores. Making sure everyone in the family feels cared for and valued. And on and on. I am sure you have additional challenges unique to you and your family.
Quality of life? For me?
But let’s also not assume quality of life is out of reach. Almost every week, I talk to a client living with a chronic condition who says to me, “My quality of life flew out the window.”
For a mental health professional, hearing those words is like dangling red meat in front of a lion. I know I have my work cut out for me. I accept the challenge! Because I truly believe that regardless of the limitations and frequent curveballs a chronic condition, like a bleeding disorder, can throw in your path, having quality of life is not out of reach.
So… ready to take a look at how to have more quality of life for you and your family?
Building More Quality into your Life
Quality of life is actionable! It’s possible to increase the quality of life at your house by paying more attention to the areas of that your life that, for you, are important to achieving quality of life. Here are some ideas to consider to help you achieve more quality.
Pay Attention to Where You are Paying Attention!
As a mental health professional, of course I can’t help but to place your emotional wellness at the top of the list of ideas to enhance your quality of life. But I think you might agree with me that your mental health is a big factor in how you experience the day. So here are some ideas for helping your day go better:
Take a look at your perspective. Are you all about where you aren’t in your life or where you are? You can choose to get down on yourself for not living up to an ideal image of where you think you should be in life, or you can choose to focus on where you are now. It’s up to you. How about looking not a where your life is lacking in quality – by your definition – and focusing on where you are achieving quality!
Start out the day with gratefulness. Take a moment every morning to think of something you are grateful for. Encourage friends and family members to do the same. Psychological research has shown that being grateful keeps you more open to what’s possible. Gratefulness picks up your mood. Mood, in turn, affects your quality of life.
Accept life on life’s terms. When you accept where you are now in your life – and tell that critical voice to be quiet – you’re on your way to being more compassionate toward yourself. Along with freeing yourself up to start looking at what’s possible! How do you come to this place of acceptance? It starts with the messages you play inside of your head. Acceptance is a big one!
The worst thing that can happen is not always the worst thing that can happen. It’s easy to get caught in the trap of “catastrophizing,” making every situation that comes up feel like an emergency. Take a step back and ask yourself: Am I looking at life through the lens of fear? And is this causing me to create the worst possible scenario that may not even be realistic? Catastrophizing and quality of life don’t go together.
Remember: Having a chronic condition doesn’t mean you are “damaged goods.” When I talk to clients about the impact of their chronic condition on their life, the word that often comes up is the word “normal.” They worry that they aren’t like other people. And their biggest fear about not being normal is being socially disconnected, not included in social events, not fun, not datable. All because their chronic condition feels like a stamp on their forehead. Your bleeding disorder is a part of your life, sure. And yes, it presents responsibilities and challenges. But this is a slice out of a very multi-faceted pie. It is not all of who you are, it’s not all of who your child is. Shift your perspective by embracing the kind, caring, engaging person that you are inside, and then commit to showing that to the outside world! Teach your child to do the same.
Manage Your Stress
I never stop talking about the importance of stress management. Why? Because my clients never stop talking about their stress. You’ve probably heard all the stress lectures. They never go out of style. Let me just say: Better stress management equals better quality of life.
Monitor yourself and your family members for signs of stress. And then address it. What are your stress buttons? And when you are feeling stressed, where do you feel it? How does your stress affect your behavior? Your stress affects your emotional wellness. In turn, when you are stressed you also affect the mood, and the quality of life, in your home. So pay attention to yourself. While you are at it, also watch for stress signs in your partner and your children. What helps you to bring the stress down in your home? Keep your stress management techniques handy!
Look for ways to relax. Doing things to promote your own calmness and peace of mind can go a long way toward healing yourself emotionally. Taking a walk, sitting in a quiet place, listening to soft music … choose an activity that helps you to relax and build it into your schedule. Especially when your emotions are threatening to boil over.
Treat the part of your brain that doesn’t talk. You’ve probably been hearing a lot about the benefits of yoga and meditation. Regularly practiced, they can help you to maintain your inner balance, so that when a stressful event does occur, you are that much better prepared to handle it emotionally. Yoga and meditation, even martial arts, can have a positive impact on areas of the brain that you are less aware of yet are also involved in your emotions. Let’s work on tackling the stress that impacts our quality of life from all angles!
Pay Attention to Wellness in the Other Parts of Your Life
Body and mind work in tandem. Don’t forget to pay attention to your physical health.
Be aware of your basic self-care needs. Take an inventory of what you need to function at your best every day. What do your meals need to look like? How many hours of sleep? Exercise? Breaks? Following your healthcare provider’s advice for managing your bleeding disorder? Sure, on some days, you may have to settle for meeting the baseline requirements – diet, medication, and as much rest as reasonably possible. But don’t allow yourself to let the self-care regimen slide day after day.
Watch out for unhealthy coping. During the pandemic, I often spoke with clients who said, “I used to have a glass of wine in the evening. Now I drink the whole bottle.” It’s all too easy to use alcohol as a way of coping with difficult situations and the feelings that come up. So is misuse of prescription medications as well as marijuana and illegal substances. When you are using substances, legal or otherwise, to cope, you are essentially kicking the can down the road, and setting your self up for a fall. And short-circuiting your quality of life.
Encourage Better Quality of Life in Your Home and Community
Decide to be kinder. Take time to give other people compliments. Make it a point to say thanks for acts of courtesy and kindness in your daily life, no matter how small. Look for reasons to give compliments. And say thank you when someone compliments you. Own it, don’t brush it off. Make giving compliments a part of your daily interactions with people around you, starting at home. Smile more, even if that means smiling first. Kindness is a boomerang, pass it around and sooner or later it comes back in your direction.
Encourage other people for their strengths, starting with your family members. When someone does well, your partner, your child, for example, focus on their strengths and how you or others benefited. Identify strengths in others. Identifying strengths builds confidence, and relationships, criticism does just the opposite. Get specific, e.g. “You’re really good at…” This encourages others to be grateful for their own gifts. Let’s help each other to feel good about ourselves.
When hit with a challenge, look for the opportunity to connect with your support team. Ask yourself: Is this a chance to learn to work together better? To share our collective expertise? To learn from each other? To strengthen our bond as family members, friends, co-workers? Think back to situations that felt hopeless at first but left you feeling stronger, supported, better prepared for the next challenge… And yes, grateful for the people who have your back. Support from other people is a key ingredient in quality of life!
Some Advice for Parents
Parents can do a lot to bring more quality of life into their home, starting with creating an environment where emotional wellness is valued. Here’s how:
Make your home a safe place for sharing thoughts and feelings. Kids have all kinds of emotions. Ask your children what kinds of feelings they are having. Listen without judgment. Encourage your children to open up, to express and talk about their emotions. Talk about your own feelings. Keep in mind that children have a sixth sense about what their parents want to hear about and don’t want to hear about, so make it clear to your kids that they can speak about whatever’s on their mind.
Share the decision-making. While you’re at it, give your children some control in their lives. Listen to their opinions. Negotiate. Encourage good decision-making and accountability.
Talk to your kids about unhealthy coping. And that may mean talking to them about alcohol and drug use. So back to my previous point. If your home is a safe place for your kids to share what’s on their mind, they will also feel more comfortable talking with you about what they are being offered by other kids at school, including alcohol and drugs. Open the conversation. Ask questions. Don’t hesitate to make your concerns known. Keep an eye on your kids, who they are hanging out with and what they are doing. Give them lots of love and support. Speak up when you have a concern and talk it out together. And connect them with a mental health professional if they need it.
Advocate for yourself and your family. Do your research on you or your child’s bleeding disorder and its treatment. Stay up on the latest research. Ask your healthcare providers questions. Give yourself permission to question their recommendations, too. And advocate at school and in your communities. Sometimes you have to make some demands to help assure quality of life for yourself and your children. And in the process, you also are acting as a role model for your children in how to advocate for their own quality of life.
Going Forward…
Here are a few additional ideas to create more quality of life at home:
Stay focused on the possibilities that each day holds. It’s all too easy to get caught up what’s hard in life. If you need some help, just take a look at the daily news. Sure, we all have some bad days, but here’s something to consider: A disappointment or a setback is a blip on the radar screen of your life. It’s not all of your life. In other words, a bad day doesn’t mean a bad life. And a bad day makes us all that much grateful on the good days.
Stay optimistic. Back to the big picture. The way things look right now isn’t necessarily the way they will look in the future. Life never stays the same for long. And you’re a resilient person. Remind yourself every day that life is good. Remind your kids, too.
Love yourself. The road hasn’t been easy. Start by going easier on yourself and not piling on the self-criticism. Give yourself a few words of encouragement. Do things you enjoy, that promote your wellness, that connect you with people you care about. Watch your self-care. Have more balance in your life.
Let go of resentment. Sure, you’ve had some big disappointments along the way. And that’s left a lot of hurt behind. But the past is past, but sitting with all that resentment is keeping you stuck there. Make a conscious effort to give up on changing what’s already happened or getting back at someone who caused you pain. Let’s move on.
Have a vision. What’s possible in your life? I mean, what’s possible when you stop placing all those limitations on yourself? Be realistic but also have a vision for your future: The kind of person you want to be, how you want to be living, who you want to be to the people you value the most. Have a vision for the quality of life you want to work toward.
Quality. On Life’s Terms. On Your Terms.
I can’t write an article on a mental health topic without reminding you that we are not control of most of life. If you or a family member are living with a chronic condition like a bleeding disorder, I’m probably preaching to the choir again. Quality of life begins and ends with acceptance of life on life’s terms, including the terms set forth by your bleeding disorder, or your child’s bleeding disorder, and your healthcare providers. But there’s room in the middle for finding quality, in your life and in your home, on your terms.
What does quality of life mean at your house? Take time to define it, and then take action.
This article was originally published in “Lifelines for Health” magazine, published by CHES.
Gary McClain, PhD, is an educator, therapist, relationship coach, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. His book, “The Power of Closure: Why We Need It, How to Get It, and When to Walk Away,” will be published by Tarcher Perigee in the spring of 2024. His website is www.JustGotDiagnosed.com. He is a frequent presenter at bleeding disorder conferences.