May is Mental Health Awareness Month

I have said before that mental health care is the hill I will die on. Rare disease, while very important to me and a passion, if I drill down to the part of rare disease that is most important to me it comes down to mental health care for everyone diagnosed with a rare disease. I feel this with every fiber of my being that at diagnosis, you are given medical instructions, you have specialists involved in your care and one of those people should be a mental health specialist. No one, is prepared for the news and everyone deals with it differently - some may hear the news, take it in and adjust their lives to living with it, some may take it as a bump in the road, and for others it derails the life they had.

Part of the problem with not getting mental health care at the time of a diagnosis will go back to many in the medical community not understanding the complexities of many of these rare disease, the trauma involved in a rare disease diagnostic journey, the fear of having something that is misunderstood by so many and the possible isolation from the life they had prior to the illness. Change can be hard - even good change in one's life sometimes requires the necessity of talking with a professional to process what is happening. And quite often when the change is unexpected and not positive intervening with mental health services quickly can prevent more serious mental health problems later.

According to a study of over 1200 adults with a variety of rare disease on their quality of life 75% reported more anxiety than average Americans and 70% greater depression (Bogart & Irvin, 2017). The numbers don't lie. People living with rare diseases face obstacles, fear and isolation that may lead to more mental health issues.

Why then are mental health needs not met in the rare disease world? Right now the mental health community in general is in crisis. Many in this field are burnt out and fewer are entering the profession. I am not one who is shy when it comes to sharing ideas and I have one here that I have shared with legislators at my local and state levels and even at the federal level. I would love to have the support of more people, as I feel that it makes sense and solves problems....

We know that the current administration is in favor of forgiving college student loans. I am really not trying to get too political, but this is where change needs to happen. What if, instead of forgiving loans for everyone in a certain period of time we looked at the professions where our country is most in need and forgave loans of those invested in working in those professions? This would give those considering professions like mental health an incentive to not only pursue that field, but work in it after graduation.

This is to me the most important part of rare disease advocacy - mental health care of those diagnosed. Removing the stigma involved in mental health diagnosis and care, getting more mental health providers, and making sure that they are trained in assisting those with rare/chronic illnesses. If you stand with me on this - please reach out and work with me to see if we can work to make change happen.

References:

Bogart, K. R., & Irvin, V.L. (2017). Health-related quality of life among adults with diverse rare disorders. Orphanet Journal of Rare Diseases, 12(177). doi: 10.1186/s13023-017-0730-1