The Issue of Depression

Today, Debbie de la Riva is a champion in the hemophilia community. Her experience in social work and community advocacy in the bleeding disorder community is echoing across the nation.  However, 20 years ago she had never heard of the disease. She discovered she was a carrier when her son was born in 1994. Since then she has spent her career passionately advocating for the hemophilia community. 

Debbie and her husband Jorge made it a priority to attend the memorial session at each annual meeting in order to learn more about all the history and tragedy that occurred in the community in the past generation. While she and her family have become incredibly involved, It wasn’t until the tragic death of their friend and the hemophilia communities beloved Barry Haarde that Debbie recognized the austerity of depression among people living with hemophilia.  “If this can happen to this superhero prototype, what else is going on in our community?” Debbie described her revelation of how common depression in the hemophilia community is, and it motivated her to learn more. She was enlightened to learn that depression in the bleeding disorder community was a bigger problem than what was currently being discussed and wanted to do something about it. 

Debbie became a professionally certified trainer with the National Council for Behavioral Health. As a mental health first aid instructor, she began reaching out to the hemophilia leaders and offers an 8-hour course to learn and recognize the signs of mental health conditions. The course provides ways to start a conversation with someone who is struggling with mental health concerns and help them find resources. She has launched her endeavor to educate and empower this community and is excited to be providing this training to local support group leaders during the Hope for Hemophilia HOPE Group leader training at the HOPE Conference in November. 

Living with hemophilia has endless challenges. Everything from: target joint bleeds, constant pain, bone deterioration, arthritis, inhibitors, infusions, spontaneous bleeds, and so much more. That does not include the emotional and mental battle the bleeding disorder community faces every day. It is understandable that all of these issues can compound up to affect a person's quality of life.

Take the issue of employment for example. Many adults living with hemophilia have struggled to maintain consistent employment because of extended stays in the hospital or frequent bleeding episodes. Unemployment and financial crisis is proven to affect stress levels, and increase anxiety. It also can be critical to maintaining physical health due to the stability of insurance coverage and access to quality care. We also must take into consideration the health of a traditional family. Some statistics show that 75% of married couples dealing with chronic illness end in divorce. (cite: http://time.com/83486/divorce-is-more-likely-if-the-wife-not-the-husband-gets-sick/) If a person living with hemophilia faces emotional pain due instability in their home it can only compound their already difficult set of circumstances. All of these factors contribute to the stability of mental health. 

In the hemophilia community, the fact is, we are living longer, and this is the first large-scale wave of adulthood the bleeding disorders community has ever experienced. “Now that we are living longer, how can we bring the best of ourselves to lead a more full life? It’s like we have to catch up.” Debbie goes on to say, “If you look at the pharmaceutical ads, it portrays that we are thriving but, my son has told me, it puts pressure on him when he has a failure. ‘I am not supposed to be having a failure, I’m supposed to be thriving, if you look at all these other ‘people’”, he says. Debbie goes on to explain that it creates a false expectation that everything for someone with a bleeding disorder should be normal with medication. 

Another aspect to consider is not only the patient but the family of the patient walking through this disease. Hemophilia is a family disease. Any mother, father, brother, sister, grandmother, aunt, uncle, or other family member having to watch someone they love to suffer in pain leaves a scar for anxiety to quickly reopen repeatedly. Due to the long road for everyone involved, it can become difficult for the caregivers and extended family who also can face depression. No one should have to walk that road alone or carry that burden by themselves, including the family members. This is why being involved with other families who understand the challenges we all face is so important. We must stick together. 

Debbie emphasized several different ways to act if you think you are experiencing symptoms of depression. First, get informed. Next, “let yourself know, it’s ok to NOT be ok.” Take the next step to let someone know, “ask for help and be super loud,” Debbie explains. It is also important to empower yourself by reading self-help books, encouraging social media posts, or listening to a motivational speech. Lastly, Debbie encourages all people living with a bleeding disorder to get involved with a support group. She encourages support groups like Blood Brotherhood and Hope for Hemophilia’s peer-led HOPE Groups. “Because of my involvement with the hemophilia community, I never felt alone.” Debbie describes. Her son has suffered through several life-threatening moments over the years, she explains. “I embrace the hemophilia community with the warmth and knowledge but, I have a healthy fear of hemophilia.” When we experience these low points, it is important that we stick together in community. We will all have ups and downs, but when we are honest with ourselves and each other, it can help us to avoid the deep moments of our depression and help us to navigate rough waters. 

“There is a misconception of depression that depression is sadness, or you may be in a catatonic state or you just can’t function.” Debbie goes on, “That’s not it. Usually, a person becomes more agitated and socially withdrawn and just has a negative outlook about life itself.” Don’t ignore these warning signs she says, and be sure to take steps to act, or as she likes to say, “do a checkup from the neck up”.  

Debbie continues to speak out about the dangers of depression and hopes to empower the hemophilia community through education. She believes that through awareness we can embrace the mental and emotional challenges that we all face and help eliminate these issues from becoming taboo. After all, the power of community is found in the things we are willing to share. 

“Alone we can do so little; together we can do so much.” - Helen Keller

If you are in crisis and need confidential support, please call the National Suicide Prevention Lifeline. It provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals. Call the National Suicide Prevention Lifeline Available 24 hours a day at 1-800-273-8255.

If you would like more information on resources and support for the Hemophilia Community or to help a loved one living with the issues discussed in this article, please call the Hope for Hemophilia office at 888-529-8023 or email us at [email protected]. 
If you are in crisis and need confidential support, please call the National Suicide Prevention Lifeline. It provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals. Call the National Suicide Prevention Lifeline Available 24 hours a day at 1-800-273-8255.

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