Rare Disease Day 2023- Mental Health

Hello. Today is Rare Disease Day 2023!

My name is Frank Rivera and I have a Rare Disease called Sarcoidosis.

I started this like that because every Rare Disease Meeting it seems like we are in a support group meeting, we always say our name and what rare disease we have. I say this because we are over 30 million strong in United States in over 7000 rare diseases worldwide. There is only 5% of rare diseases that have a cure. That in itself is ridiculous.

We as a rare disease community have had so many challenges when it comes to diagnosis, treatments and of course cures.

I wanted to take today to talk more about Mental Health and Rare Diseases. Being a male and talking about mental health and its effect on rare diseases was unheard of not that long ago. 10 years ago, I didn’t hear about it at all. Luckily it has moved into the forefront lately.

I am going to bore you with statistics:

  • Every day, approximately 132 Americans die by suicide.
  • There is one suicide death in the US every 10.9 minutes.
  • Suicide is the 3rd leading cause of death for 15- to 24-year-old Americans.
  • The highest suicide rates (per 100,000) in the US are among white males (26.4), followed by American Indian/Alaska Native males (25), and Black males (14.1).
  • There is one suicide death for every estimated 25 suicide attempts.
  • There are approximately 1,204,575 annual attempts in the U.S. (using 25:1 ratio) or one attempt every 26.2 seconds.

We as the rare disease community fight with the physical health and unfortunately forget about our mental health care. I am going to hit on different aspects of Mental Health in this blog. I am going to speak about Men’s Mental Health, Patient Mental Health and Caregivers Mental Health.

Men’s Mental Health

I have been speaking on this subject for a couple of years. We as men have been told for most if not all of our lives, have been told to “Be A Man!” “Real Men Don’t Cry!” “Buck Up and Be Strong!” and so much more. Well, you see that does NOT work! Look at those statistics up above. We as a community need to acknowledge that men need to be able to ask for help. It makes you Strong to ask and know you need help. We need to show support to our male patients and caregivers and let them know they are not alone. You see when I go to many rare disease conferences the amount of men that are at these conferences are small. Not because men don’t want to be there, it is because there are too many stigmas on roles as men and women. We need to knock down those stigmas and those “suppose” to follow. As time goes by I see more male advocates, which is great, but we need to have more breakout groups for men. I believe now that Covid is over more people are learning that men suffer just as much as women.

I also want to say to men, asking for help could be a therapist, a religious leader, a really good friend (one who will be able to support you and also get you moving both physical and mental), another patient or caregiver or a support group. There are support groups that are in person as well as male support groups online.

Statistics of Male Caregivers

  • Of all caregivers in the United States, 16 million, or 40% are men. Of these men: 63% identified as primary caregivers. 50% are caregivers by choice, the other half felt obligated to take on the role.
  • In recent decades, gender norms in American society have begun to shift away from stereotypical roles where women are characterized as innately nurturing and passive, while men are seen as independent, decisive, and natural problem-solvers.  Younger generations are challenging the traditional ideals of how our culture defines our roles and expectations based on our gender or sex. 
  • The average age of male caregivers is 26.9, although the average age of adult children caring for an aging parent is 46.4. Men who care for a spouse are an average of 62.5 years old.
  • 37% refrained from telling their employer about their caregiving responsibilities. For millennials, that rose to 45%.
  • 49% of men felt they had no choice in taking on their role as caregivers. This number rose to 60% when caring for a partner or spouse.
  • 52% of male caregivers anticipate caring for someone in the following five years.
  • 56% of caregivers assisted with medical and nursing duties (75% for those caring for a spouse). 47% helped give medication or injections, but 72% reported having no prior training.
  • 62% state their responsibilities to be stressful, 46% report physical strain, ad 44% experience financial stress.
  • 62% found it necessary to assist with personal care and secondary tasks, and 54% found it difficult to help with more intimate responsibilities.
  • 63% of male caregivers report being the primary caregiver. Of this percentage, 52% had additional help, but 78% received no outside support.
  • 66% of men work 40 hours a week. 62% of this group had to make special work arrangements. 48% were late, left early, or took time off to handle caregiving duties. 15% had to take a leave of absence or work part-time.

Patient Mental Health-

Patients are a rare breed, yes pun intended. We go through so much just to survive. We go through things like pain, disease progression and other diagnoses as well. We fight each day just to live that day and more in the future. But my question is:

What do you do to help your mental health?

My specialist told me on my very first visit. “Fighting off any disease is 90% mental and 10% physical. I can give you any medication and if your brain gives up your body is going to give up too.” I took that to heart. From that day, I try to fight each day both mentally and physically. I have learned to ask for help. In time I learned to say no when I didn’t feel well.

I also have been steady going to the same therapist for the past 12 years plus. She has been a savior. You see in 2015, I was ready to attempt suicide. I had it all planned out. I was being told they didn’t know what to do for me anymore and the pain was so tough to bear. Plus I could barely get out of bed and felt I was being a burden to my wife and daughter. So, I truly was ready to leave this world. But I did one last thing that saved my life. I called my therapist! She brought up something to make me think. She said “You don’t want to die!” I was like “yes I do!” She was like “No you don’t!” I asked, “Why do you say that?” She replied “You would not of called me!” That rang true to me. So, we decided to talk further, and we decided that I should sign my self to a 72 hour watch. I could of easily have been one of those statistics from above. Yes, I have a personal stake in Mental Health, but I also see too many patients suffering and either not knowing they need help or more likely they can’t afford to get a therapist or there aren’t enough therapists for patients.

Caregivers Mental Health-

Now here is what I deemed “The Forgotten Ones.” Caregivers can be anyone who help a patient in any capacity. I have always been told that a Caregiver is the one taking care of the patient. Well to me there are different types of Caregivers. There are those who are there all the time, those who help whenever possible, or those who spend their available time no matter how long who also can be Caregivers. I am also going to say that Caregivers aren’t specifically family, partners, or friends. There are appointed health care workers and so many others.

You see I call the Caregivers the forgotten ones because they are the ones who work so hard to be there for the patients, that they forget about their physical and mental health. They are also the forgotten ones because they are never asked about their own health and/or their mental health care. People forget that being a Caregiver is one of the most stressful positions in life. For the most part many Caregivers are just expected to be there for the patient, especially for children with rare diseases. Some Caregivers are not warned and don’t get a road map on how to deal with the diagnosis, the patients, or how to be Caregivers. So stress plays an important everyday outlook for all types of Caregivers. Not only are they running around taking care of the patients, but they are also expected to take care of themselves.

Here are more statistics:

  • Half of all family members who care for elderly people die before the patient, statistics show, or they become seriously ill due to self-neglect.
  • The study was published in the Journal of the American Medical Association.
  • In the May 2022 survey, 36% of caregivers said they suffer from depression/anxiety, a figure that is 114% higher than reported by non-caregivers.
  • 40% to 70% of family caregivers have clinically significant symptoms of depression. About a quarter to half of these caregivers meet the diagnostic criteria for major depression. [Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective.]
  • Roughly 4 in 10 (38%) family caregivers find their situation highly stressful (score 4 or 5), 25% report moderate stress (score of 3), and 36% report little to no stress (rating of 1 or 2 based on a 5-point scale). [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • Thirty-five per cent of parents with chronically ill children met criteria for clinical depression, compared with 19 per cent of parents with healthy children. More than half (57 per cent) of parents with chronically ill children met criteria for anxiety compared with 38 per cent of parents with healthy children. As per Sick Kids Research

These numbers are staggering. We need to support Caregivers just as much as we support Patients. We also need to make sure that both men and women get help.

So, as night falls on another Rare Disease Day, I just want to say that we need to keep pushing for better Mental Health. As my Specialist said, “You can’t fight your rare disease if you give up mentally.” That also pertains to Caregivers!


Author: fjr311

Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Patient Ambassador for Illumina Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.

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