October 10 2019 is World Mental Health Day to raise awareness and mark this day we have published a MENTAL HEALTH Special supplement and are running a series of blogs #WorldMentalHealthDay
Frank Rivera, Sarcoidosis of Long Island, was diagnosed with sarcoidosis and talks to RARE Revolution about his experience of the disease and the enormous impact on his mental health
I have a rare disease called sarcoidosis, a disease characterised by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs. With sarcoidosis there is no known cause or cure. They do know what accelerates the disease: heavy dust, chemicals, moulds and other environmental causes.
In 2011, I was diagnosed with sarcoidosis in New York. You see, in 2004 I was diagnosed with lung cancer and went through four years of chemotherapy and radiation while living in Florida. I was told I was in remission in 2008. Only to find out I never did have lung cancer at all. I was misdiagnosed. That happens a lot in the rare disease community, only they went that extra step of four years of chemotherapy and radiation. I say this part because the chemotherapy did help the granulomas from growing, but the radiation actually compromised my system so much that by the time I was diagnosed with sarcoidosis it was already in 75 per cent of my body, I was part of the 30 per cent of sarcoidosis patients chronically ill.
What the doctor said to me next changed my life forever:
You have a choice in life! You can curl up in a ball and give up or you can be a fighter!
I had a choice. It was up to me to decide which way I was going to go. I decided right away to find a mental health counsellor, best decision in my life. I still see her now. In 2012, I became a Rare Disease Patient Advocate Why? I wanted to make sure nobody would have to ever go through what I did and to make sure that no one else would feel alone. For several years I started out as an advocate that spoke to the government officials first, to raise awareness for sarcoidosis then I branched out for all rare diseases. In 2015, I was in so much pain both physically and mentally. I was being told treatment after another treatment and nine surgeries later that I was not responding to any of the medicines they have used for sarcoidosis patients. That they were not giving up on me, but don’t know what to do with me at the same time. I started to get in a real dark place, just because you have a counsellor it doesn’t mean everything is going to be fine. You still must believe what you are saying to yourself and to others. Well I stopped believing it. In September 2015, I called my counsellor with thoughts of suicide. That is right Mr. Strong Guy was giving up. I was the guy who was positive, the guy everyone called for advice and to pick them up. I called it: “The Tears of a Clown.” It is a song from the sixties I grew up hearing from my parents. On the outside I was smiling, but on the inside, I was falling apart. Yes, that person, ME, was ready to give up on life. I knew exactly how I was going to do it too. I had the opportunity to do it. I rationalised by saying I am being a burden on my family, and they would be better without me. What made me make that call to my counsellor that day I truly don’t know for sure, but I believe that there were two main reasons, my wife and daughter. Another part of me believes I called my counsellor because I was my Mother’s child. She was sick for most of her life and most of mine and never gave up. I am not a quitter! I ended up going into the local hospital for a 72-hour watch, which basically means on suicide watch. It changed my life. It made me become more aware of not only my mental health but other people’s mental health too. In the past two years in the sarcoidosis community of people I know, there have been about 100 sarcoidosis patients that have passed away from sarcoidosis or related illnesses. That is a lot of people, too many, but what makes it worse is I know in that same time about thirty of them committed suicide. This isn’t just a sarcoidosis problem. This is a rare disease problem! When you are dealing with a disease that is hard enough, but when you are dealing with a disease that has no cure it sure can work on you mentally. If there is one takeaway from this blog, I want it to be: Don’t think you are alone or that you are too strong to seek mental health assistance! You know what makes you strong? ADMITTING YOU NEED HELP! In April of 2018, I was told by a group of amazing specialists, both sarcoidosis and Parkinson’s that I have been reclassified from chronically ill to terminally ill. I have sarcoidosis in almost every major organ except my liver and kidneys. I was given a couple of months to live. Guess what?? I am still here! You want to know why I think I am here? For me being sick is 10 per cent physical and 90 per cent mental.
It has grown into an advocating organisation to fight for the rights of people who have this rare disease. They work with local, county, state and national government officials to gain recognition and raise awareness for this rare disease.
Supporting sarcoidosis patients with a support group.
Partnering with other organisations to help find a cure.