Receiving a diagnosis of a bleeding disorder and navigating management is life-changing for you and your child. Your family may feel uncertain about how this diagnosis may affect your daily lives. When your child is diagnosed with a blood or bleeding disorder or is seeking a diagnosis, a lot of focus is put on physical health. However, emotional health is just as important. It is essential to explore both your child’s and your emotional health and get help if you need it.
This section of Emotional Health covers:
Understanding Emotions and Emotional Health
Emotional Impacts of Having 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 and your child have probably 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 life stages 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 and your child have a good quality of life.
Common Emotions
Your child 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 and your child are feeling because they have gone through something similar.
- Your and your child’s emotions and feelings are very real and valid. Pay attention to them.
- Exploring and managing your and your child’s 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 and your child’s health care team, such as the team at your child’s 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 child’s 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 child’s bleeding disorder
- Feeling alone because you feel different from other parents or caregivers in your child’s class
- 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.
Examples of ways your child’s bleeding disorder may impact their emotions:
- Feeling stressed and scared going to health care providers’ appointments and treatments
- Feeling overwhelmed with having to educate their teachers and other kids about their blood or bleeding disorder
- Feeling alone because they feel different from other kids in their class
- Feeling exhausted
- Feeling angry that they have to prepare for a bleed when traveling or going on a field trip
- Feeling happy when they meet other people in the community who are like them
- Feeling excited to go to bleeding disorders camp with their friends
- Feeling nervous but empowered by sharing their story with others
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 Having a Blood or 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.5 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.
Grieving a Diagnosis
Grief is a very normal emotion to feel after receiving a diagnosis of a blood or bleeding disorder. It can feel like a loss in a lot of ways and grieving is a natural part of processing the loss. Grief is very personal. There are no timelines and no ‘right’ or ‘wrong’ way to deal with grief.
Stages of Grief
Grieving is a natural and complex process. There are many models explaining how someone moves through grief. One of the most well-known models breaks grief down into different stages. Not everyone experiences the stages in the same order and the process is rarely linear. You may move through different stages at different paces, and you may not feel emotions to the same intensity or in the same order. You may circle through all stages and then go back to the first ‘stage’. You may go from stage 1 directly to stage 4. You may stay at stage 2 for a long time. As hard as it is, it’s important to allow yourself to go through the grieving process and remember you are not alone.4
Following closely after shock, denial may be used to cushion the reality that is unfolding. During this stage you may think or even say, "This can’t be happening to my child."
These are true and intense feelings of rage. They may be directed toward your spouse or partner, yourself, or health care providers.
You may try to make a deal, bargain, or promise with the universe, asking, "If I do this, will you take away the loss?"
At this stage, you may feel emotionally and physically drained from the experience. You may have overwhelming feelings of hopelessness, frustration, bitterness, or self-pity. You may also mourn the loss of their hopes, dreams, and plans.
Once you reach this stage, you will begin to feel that anger, sadness, and mourning have lessened. You will start to see the reality of the loss clearly and acknowledge the life change it has brought.
In recent years, some researchers have also added another stage: finding meaning as well as ‘reconstructing a new life’.3 They note that when you go through grief it changes your life and perspectives and sometimes requires building a new life.
While these are guides to help you make sense of what you are feeling, it is important to recognize when you may need additional support. In these situations, seeking advice and guidance from a mental health care provider may be beneficial.
Just as adults feel depressed, children do, too. Children may feel sadness about their blood or bleeding disorder for many reasons. They have to manage a chronic illness and deal with pain and fatigue. Children may feel different from their friends and classmates, and they may be fearful of getting a bleed.
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.
Children with depression display different signs than adults who are depressed. The American Academy of Child and Adolescent Psychiatry has prepared a list of signs of depression in children.
Here are some signs of depression to look for2:
- Feeling or appearing depressed, sad, tearful, or irritable
- Not enjoying things as much as they used to
- Spending less time with friends or in after school activities
- Changes in appetite and/or weight
- Sleeping more or less than usual
- Feeling tired or having less energy
- Feeling like everything is their fault or they are not good at anything
- Having more trouble concentrating
- Caring less about school or not doing as well in school
- Having thoughts of suicide or wanting to die
Here are some situations that may relate to the risk of depression in children with bleeding disorders:
- Activity limitations: Sitting on the sidelines while classmates play sports or not being able to participate in other off-limit activities can contribute to depression in children with bleeding disorders.
- Seeming different: Children whose chronic illness affects their appearance or attracts unwanted attention may also be more likely to experience emotional struggles. Children with a bleeding disorder may be self-conscious about bruises, frequent nosebleeds, heavy menstrual bleeding, needle marks, or swollen joints. Needing crutches or a wheelchair can add to the feeling of being different.
- Overprotective parents or caregivers: Sometimes a parent or caregiver's concern about their child's well-being can also attract unwanted attention from a child's peers. Children who are not allowed to participate in activities or whose parents or caregivers are overly protective may be teased by peers.
Depression can also be impacted by other issues outside of your child’s blood or bleeding disorder, such as dealing with parents or caregivers’ divorce, moving to a different city, or bullying.
Addressing Depression:
It is important to get your child help if you think they 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.
Children can be impacted by anxiety just like adults can. Dealing with a blood or bleeding disorder on top of the challenges of growing up can be a lot to manage. Maybe your child is fearful about their treatment or getting a bleed. Maybe they are struggling to fit in because they feel different from their peers.
Detecting Anxiety
Occasional worrying and anxiety are feelings almost everyone experiences, especially related to stressful life events. With kids, it is developmentally appropriate to show distress when separating from parents/loved ones or being afraid of the dark or the monster under the bed. However, it’s important to not dismiss fears. Pay attention to how long your child’s fears and anxieties last and if they are interfering with their everyday life. Children with anxiety may display different signs than adults who have anxiety. The American Academy of Child and Adolescent Psychiatry has prepared a list of signs of anxiety in children.
Here are some signs of anxiety to look for1:
- Frequent sadness, tearfulness, crying, temper tantrums
- Bedwetting
- Uncontrollable and constant worry
- Being overly clingy
- Refusing to go to school
- Decreased interest in activities
- Social isolation
- Low self-esteem and guilt
- Extreme sensitivity to rejection or failure
- Increased irritability, anger, or hostility
- Frequent complaints of physical illnesses, such as headaches, muscle aches and stomachaches
- Frequent absences from school or poor performance in school
- Poor concentration
- Changes in appetite
- Trouble sleeping
- Repetitive unwanted thoughts
Addressing Anxiety:
It is important to get your child help if you think they 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 or your child needs 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. Kubler-Ross, D., & Kessler, E. (2014). On grief and grieving. London, England: Simon & Schuster.
4. Kübler-Ross, E. (1970). On death and dying. New York, NY: Collier Books/Macmillan Publishing Co.
5. 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