Finding out that you have hemophilia A can be tough. Coming to terms with the diagnosis won’t happen overnight. But soon enough you’ll find ways to feel better and continue on. Here are some helpful management and coping strategies to get you started.
Join a support group
If you’re in the United States, you can reach out to the Hemophilia Federation of America or the National Hemophilia Foundation to connect to other people in your area who have hemophilia A. Support within your community can help make you more confident about managing your bleeding disorder, improve your quality of life, and help you learn about other resources available for managing your disease. Socializing with other people with bleeding disorders can be a beneficial experience. Children living this this disorder can connect in person through summer camps and local events set up through a hemophilia support group.
Online support groups and forums are also excellent ways to get advice and support from others with hemophilia A. The anonymity of an online forum makes it a bit easier to talk honestly about your feelings and problems. Children’s activity on online forums should be monitored for their safety.
Focus on what you can do, not what you can’t
If you have hemophilia A, you may find yourself discouraged by all the activities you were told you can’t do. It’s important not to dwell on what you can’t do. Your limitations in no way define who you are. Instead, focus on what you can do. Plenty of physical activities are perfectly safe for people with bleeding disorders. Certain types of exercise are now even encouraged.
Exercise and physical activity has been shown to reduce bleeds and decrease joint pain, and many people find that exercising is an excellent way to release some tension.
There’s no need to run a marathon or climb a giant mountain. Start with stretching programs and walking. You may even find that this is enough for you to feel better.
If you want, you can slowly progress into some activity or sport. Swimming, biking, and hiking are all excellent choices. If you need a social environment, bowling clubs offer an excellent opportunity to play a sport and also make friends.
Most people underestimate the importance of eating a healthy diet on their overall stress levels and well-being. A bowl of ice cream might make you feel good for a brief moment, but a diet rich in vitamins, minerals, and fiber will leave you feeling your best in the long run. In addition, keeping yourself at a healthy bodyweight is much easier on your joints.
Your diet should focus primarily on menus filled with vegetables, fruits, beans, whole grains, and nuts, along with lean proteins, low-fat dairy, water, and unsaturated fats. Limit your intake of foods high in saturated or trans fats and added sugars.
Get enough sleep
A lot of people undervalue the importance of a good nights’ sleep. Adults should get at least 7 hours of sleep each night. Adolescents need more than 8 hours of sleep a night, and children should be getting anywhere from 9 to 15 hours of sleep a night depending on their age.
Try going to bed and waking up at the same time each day. Establishing a sleep routine can help put your body into a healthy rhythm, which in turn leads to higher quality sleep.
Good sleep reduces your stress levels, and improves your overall mood. This can make tackling your busy day — and hemophilia — that much easier.
Meet with a mental health professional
Living with a chronic disease isn’t easy. When depression and anxiety interfere with your normal life and social activities, it should be taken seriously.
Sometimes you need to talk about your problems with someone other than a friend or family member. A mental health professional, such as a counselor, social worker, psychiatrist, or psychologist, can give you the guidance you need to get through seemingly overbearing problems.
People with chronic illnesses have more stressors than healthy individuals. Repeated doctor’s visits, medical tests, health care costs, and ongoing treatment can be overwhelming. Hemophilia treatment centers (HTCs) usually have mental health professionals on site and ready to help you.
A mental health professional may recommend that you start taking antidepressants to help you feel better. Antidepressants don’t work right away, but become more effective over time. Finding the right medication for you can take time and patience. Treatment for depression or any medical condition should always be discussed with the staff at your HTC.
You’re the only person with the ability to make yourself feel better. While that may sound intimidating, you can do many things to achieve this goal. Finding a support group to vent your frustrations, exercising, joining a sports club, sticking to a daily routine, and getting enough sleep are ways to make living with a chronic illness just a little bit easier. You’ll need to be proactive in managing your condition. If you’re struggling to get going, don’t be afraid to ask for help from friends and family members or a member of your HTC team.