Part of becoming independent is exploring, understanding, and learning how to manage your blood or bleeding disorder. Many aspects focus on the impact of physical symptoms, but it is important to talk about the emotional effects, too.
This section of Emotional Health covers:
Understanding Emotions and Emotional Health
Emotional Impacts of a Bleeding Disorder
Understanding Emotions and Emotional Health
Emotional health involves understanding your emotions and how to cope with them. There are many different emotions, and it is normal to feel all of them at one time or another. In fact, having emotions is part of what makes you human. You probably have felt happy, sad, scared, excited, bored, and engaged. There are no ‘good’ or ‘bad’ emotions, though some may feel more comfortable than others. Your emotions and their intensity may change at different stages of life and even day to day.
It is important to learn how to identify and express the emotions you are feeling. Once you can do this, you are better able to cope with your emotions. Being able to cope with emotions will help you have a good quality of life.
Common Emotions
Your might feel:
- Content
- Angry
- Happy
- Sad
- Alone or Lonely
- Fatigued
- Exhilarated
- Calm
- Stressed
- Guilty
- Empowered
- Helpless or Hopeless
- Confused
- Confident
- Resentful
- Thankful
- Empty
- Rebellious
- Engaged
- Awkward
- Excited
Here are some more things to remember about your feelings:
- You’re not alone. Although each person’s situation is different, there are people who understand what you are feeling because they have gone through something similar.
- Your emotions and feelings are very real and valid. Pay attention to them.
- Exploring and managing your emotions is a process and you do not have to do it alone! It’s important to seek help from trusted people in your family’s life if you are struggling. These may include mental health care providers and your health care team, such as the team at your HTC.
- Finding a support network and feeling connected to others is important. It can help ease the feeling of being alone. Your local chapter can be a great starting point to meet others in your community.
If you would like more information about where to find your local chapter, please go to NBDF’s Chapter Network
Examples of ways your blood or bleeding disorder may impact your emotions:
- Feeling stressed navigating health care providers’ appointments and treatments
- Feeling overwhelmed with educating others in your life about your blood or bleeding disorder
- Feeling alone because you feel different from others around you
- Feeling exhausted
- Feeling confused about how to navigate family planning
- Feeling angry that you have to prepare for a bleed when you travel
- Feeling thankful for the supportive people you have met in the blood or bleeding disorders community
- Feeling nervous but empowered by sharing your story with others
- Feeling engaged when you advocate to elected officials
- Feeling confident as you take on a leadership role in the blood or bleeding disorders community
Managing a blood or bleeding disorder impacts you and the lives of those you love. It may seem overwhelming at times but managing a blood or bleeding disorder can also bring opportunities for building confidence and strengthening relationships
In this video, you'll hear the personal experiences of those who have not only met the challenges of managing a bleeding disorder but have gained the benefits of a positive outlook.
Bleeding Disorders: Find Your Silver Lining
Emotional Impacts of a Bleeding Disorder
Dealing with a blood or bleeding disorder may evoke many feelings and emotions. If you are struggling with any of these feelings, you are not alone! Between 20 -25% of people with chronic illnesses have a mental health disorder.3 These can be disorders like anxiety or depression. Below are some of the emotional impacts of having a blood or bleeding disorder or caring for a child who has a blood or bleeding disorder.
Depression is thought to impact around 9% of people with bleeding disorders.2 People with bleeding disorders have the stressors of everyday life combined with their chronic illness. This can exacerbate feelings of depression. Depression appears to be connected to bleeds, hospital visits, quality of life, and joint pain issues.
Detecting Depression
Depression isn't just a few days of bad moods and feeling down or sad. Depression includes persistent feelings of sadness or hopelessness which can be strong enough to interfere with everyday life.
The National Institute of Mental Health has a list of signs of depression in adults and teens.
Here are some signs of depression to look for2:
- Frequent sadness, tearfulness, or crying
- Decreased interest in activities and hobbies
- Hopelessness
- Persistent boredom or low energy
- Social isolation
- Low self-esteem and guilt
- Increased irritability, anger, or hostility
- Frequent complaints of physical illnesses, such as headaches and stomachaches
- Difficulty concentrating, remembering, or making decisions
- Changes in eating and/or sleeping patterns
- Thoughts or expressions of suicidal or self-destructive behavior
- Abuse of drugs or alcohol
- Suicide attempts or thoughts of suicide or death
Addressing Depression:
It is important to get help if you think you are depressed. Talk to your Hemophilia Treatment Center (HTC), primary care provider, or mental health professional about resources and recommendations. Additional information can also be found in the Finding Resources section.
Anxiety disorders are the most common mental health disorders in the US. In the bleeding disorder community, it is thought to impact 10.1% of people.1 People with bleeding disorders have worries and concerns of everyday life combined with their chronic illness. This can exacerbate feelings of anxiety. Like depression, anxiety appears to be connected to bleeds, hospital visits, quality of life, and joint pain issues in people with bleeding disorders.
Detecting Anxiety
Occasional worrying and anxiety are feelings almost everyone experiences, especially related to stressful life events. Anxiety involves worrying and other symptoms that do not go away and can get worse. Anxiety includes symptoms like worrying, restlessness, and feelings of dread that interfere with your everyday life.
The National Institute of Mental Health has a list of general signs of anxiety in adults and teens.
Here are some signs of anxiety to look for1:
- Uncontrollable worry
- Persistent feelings of dread
- Feeling restless or on-edge
- Fatigue
- Social isolation
- Increased irritability, anger, or hostility
- Frequent complaints of physical illnesses, such as headaches, muscle aches and stomachaches
- Difficulty concentrating
- Changes in appetite or weight
- Change in sleep patterns and difficulty falling or staying asleep
Addressing Anxiety:
It is important to get help if you think you are suffering with anxiety. Talk to your Hemophilia Treatment Center (HTC), primary care provider, or mental health professional about resources and recommendations.
Finding Resources
It is important to remember you are not alone – there is always help. Be sure to act if you need professional help.
If you want more information about managing stress, please go to Managing Stress.
If you want more information on where to find your local HTC, please go to Search Directory (cdc.gov)
If you want more information about where to find your local chapter, please go to NBDF’s Chapter Network
1. Anxiety and Children (2017, October). The American Academy of Child and Adolescent Psychiatry. Retrieved from https://www.aacap.org/AACAP/Families_and_Youth/Facts_for_Families/FFF-Guide/The-Anxious-Child-047.aspx
2. Depression in children and teens (2018, October). The American Academy of Child and Adolescent Psychiatry. Retrieved from https://www.aacap.org/AACAP/Families_and_Youth/Facts_for_Families/FFF-Guide/The-Depressed-Child-004.aspx
3. Turner, J., & Kelly, B. (2000). Emotional dimensions of chronic disease. The Western Journal of Medicine, 172(2), 124–128. doi:10.1136/ewjm.172.2.124