PTSD Awareness - Rare Disease

Post Traumatic Stress Disorder commonly known as PTSD is defined as an anxiety disorder that develops in reaction to a physical injury or severe mental or emotional distress, such as military combat, violent assault, natural disaster or other life-threatening events (DSM 5, 2018). June is recognized as PTSD awareness month. Going back to that definition that mentions a few specifics, I would like to point out that it does not mention medical PTSD, but for those of us who have been through a long, complicated diagnostic journey to be diagnosed with a complicated and often misunderstood life threatening chronic rare illness, the trauma is real.

Going back to the diagnostic journey....Just imagine being sick knowing that something is wrong, very wrong, but no one believes you - not the doctors who should treat you and not even those who love you most in your life. Every day you feel sick, some days to literally the point of death, but there are no clear answers and those who should be helping you seem to be working against you instead.

It is natural then for you, as patient or caregiver, to begin doing your own research. These days most people will then turn to the internet. And the internet can give you a lot of good information, but it can also send you down a "rabbit trail". When searching on the internet you will typically find the most serious conditions first - not to cause fear, but because you would not want to overlook something serious. But when you are grasping for answers that no one will give you and you see these results they can make your heart sink. It can feel like those worst options are in bold and the only ones you see.

You bring those ideas to those who care about you - your closest friends and family - they tell you not to worry, that it is all in your head. Each day you are still feeling awful, maybe worse, possibly with new symptoms. You bring those internet diagnoses to those who care for you - your doctors and they tell you that those things are so rare that you needn't worry about them. Again, you are told that in so many words that what you are feeling is not so bad, that you are overreacting, it is all in your head.

Many times this is the road to a rare disease diagnosis. Until something happens that requires urgent medical attention. Now those who care about you are demanding answers from those who care for you. Often it is an emergent situation like this that leads to answers, often a life or death situation.

This is how it was for my son who was diagnosed with Addison's Disease. It was not until he was in a full-blown adrenal crisis that he was diagnosed despite months, possibly years of not feeling well. I sometimes wonder if he ever really knew what it was like to feel well and that breaks my heart. I imagine and have shed countless tears over the times I pushed him out of bed, to school, onto the soccer field, not knowing that he was literally just fighting to stay alive. Doctors diagnosed him with anxiety, ADHD, severe asthma, told me he was prone to more upper respiratory infections, and tried treating all of those conditions.

My son definitely has medical PTSD from all that happened to him at a very young age, and that is very typical of someone with a rare diagnosis. The mental anguish of not being understood even by those who love you most, the anxiety of what it could be, the fear of more symptoms of feeling worse and no answers until a life-threatening crisis, all lead to actual trauma. This is just one more reason that I believe that at the time of diagnosis with a rare and/or chronic illness someone should be prescribed mental health care.