Beating the Bleeding Disorder Blues

Beating the Bleeding Disorder Blues
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Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column.

It happens to the best of us. The alarm goes off in the morning and we do NOT want to get out of bed. Pulling the covers over our heads, our deepest desire is to hide from the world, at least for the moment. The safety of our warm bed encourages us to stay, even though we need to move.

The world and our day-to-day responsibilities do not stop for our bleeding disorder, even when we would like them to. Sometimes the thought of facing the day and our bleeding struggles can be too much.

Some signs your bleeding disorder is getting to you

  1. Loss of interest in social activities. You are no longer interested in activities that you used to enjoy. It becomes a chore to join the basketball pickup game or choir rehearsal.
  2. Withdrawal from friends and social situations. You find yourself making excuses or shying away from social interactions, parties, movies, and gaming nights that used to bring you joy and connection.
  3. Infusion routines become intolerable. You may even think about skipping an infusion because you do not feel you have the mental energy to cope with the process and time it takes to treat yourself.
  4. Anger and jealousy. You may feel jealous of your peers who do not have to cope with bleeding issues. The feelings of injustice may also cause you to be angry at your non-bleeding friends. This can negatively impact social interactions.
  5. Loss of patience. When life is tough, it is hard to have patience with day-to-day frustrations. We all have moments when we make mistakes, drop glasses, or spill food. When we are struggling, it is hard to find patience. You may ask yourself if your reactions are appropriate for the situation or if your emotions are coming on a bit strong.
  6. Feelings of desperation or thoughts of suicide. This is a tough topic, but sometimes when life gets overwhelming, people think about harming themselves. If you are in this place, know that many people care about you. You deserve help and deserve to live. Reach out to your local or national suicide prevention resources immediately.

Some ways to help with the blues

  1. Give yourself permission to be human. We all have bad days. When you do, look for solutions instead of beating yourself up.
  2. Journal your feelings. Allow yourself to express all of the emotions you have. Write down your feelings or a letter sharing them. You can even address a letter to your bleeding disorder, telling it how you feel about its presence in your life!
  3. Join the larger community. Attend chapter events or national conferences. Join an online support group. Connecting with individuals who also have bleeding disorders can provide a wonderful opportunity to both give and receive support. You are not alone.
  4. Seek out mental health support. It is not a sign of weakness to seek assistance from a trained mental health professional. In fact, it takes great strength to ask for assistance with facing struggles head-on. Licensed professional counselors, marriage and family therapists, psychologists, and social workers can assist you.
  5. Spoil yourself. Book a massage, read a book, pick a bouquet of roses, purchase a new perfume, take a long bath, binge-watch your favorite TV show. Allow yourself to take time to nurture yourself with the things you love.
  6. Surround yourself with support. Spend time with supportive friends. Laugh and cry with them. Allow your support network into your life. If you feel your support network needs to expand, consider adding a new hobby that will allow you to meet people. Perhaps this means joining a choir, civic organization, or local sports team.
  7. Get moving. Never underestimate the power of natural endorphins! Participate in safe aerobic activities that have been approved by your medical team, such as swimming, bicycling, or walking.
  8. Absorb the power of pet therapy. Spend time cuddling a group of puppies or kittens, volunteer at a shelter, or give a great big hug to your own furry friend. Unconditional love from our pets bolsters our souls.

It is normal to have emotional ups and downs, particularly when living with a bleeding disorder. There are times when we will struggle, and that is OK. Having a plan in place to assist us when we hit our low points is so valuable.

The struggle we face with a chronic disorder is real. Support through the battle to help us beat the bleeding disorder blues is critical. It will help to create balance in our lives and make our journey more manageable.

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family.
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Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family.
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