Rare disease diagnoses generally come with mental health issues. Oftentimes, we see depression and anxiety go hand in hand with the unknown. An analysis of the de-identified self reported patient data from our HOD Patient Registry shows a clear comorbidity with depression. This should surprise no one. You see, receiving this diagnosis is a double edged sword. On the one hand, you are relieved to put a name to the collection of truly bizarre symptoms that you have been living with. On the other, you are now the proud owner of a neurodegenerative disease with no treatments and no cures. This starts the majority of us in a spin-cycle of doom.

With a diagnosis of Hypertrophic Olivary Degeneration, many of us wake up one day with a completely different experience of the world from the day before. It just happens to us with no explanation and no prior issues. Even for the folks that did have prior brain issues, HOD comes out of nowhere. It is truly remarkable if a patient is able to experience this with their mental health intact and unscathed!

How Can We Recover Our Mental Health?

Above all, we need to let our doctors help us. There is absolutely no shame in pharmaceutical intervention under your doctor’s care. This can and may be one part of a long term solution. Many have found it helpful to seek a therapist who specializes in grief and chronic illness. Accepting that this has happened to you is important in the healing journey. Fully grasping your new reality and letting go of your past self is incredibly therapeutic. Acknowledging the person you were before and honoring that version of you is restorative, albeit terrifying. However, mentally processing the trauma is an essential step.

Finding and embracing your second life is also quite beneficial. Some find solace in embracing creativity. Perhaps there has been an artist waiting to step into the light and shine. Maybe HOD has given you a new ability to relate to others in a vulnerable way. Have you tried baking or bike riding or becoming a pen pal? What if HOD helped to amplify your hidden talent? Basically, changing your perspective on the future can transform your present. You can still do great things. HOD doesn’t get to take your potential from you unless you choose to give it away.

Doing Great Things Bolsters Mental Health

If you follow the Two Disabled Dudes Podcast, you know that Sean and Kyle are embarking on a Trike Trek up the world’s highest road in the Himalayas. This is a two hundred mile ride. What makes this remarkable is that the dudes both have Friedrich’s Ataxia. Acquired Ataxia is the second most common comorbidity in HOD. Maybe you are thinking that is an impossible dream for you, and maybe it is. But what is an attainable dream for you? What about a public speaking engagement? Or hosting a fundraiser? Perhaps making a goal to exercise three times a week? Whatever you choose, it is important to set a goal, set an intention behind the goal, then make small steps to make progress towards achieving the goal. Your life is only just beginning!

Your Turn!

How have you managed your mental health through the rough waters of diagnosis? What great things are you doing or striving for in your life? Tell us in the comments!