That’s the thing. We don’t. We don’t understand OCD.
But I can try and help you understand what it is like to live with chronic OCD.
That person, that normal looking person is far from normal. They are disabled, in a crippling and most often hidden world inside their heads. That picture you see on social media, of a happy free person, smiling with their friends, is a tiny moment in time, which took days and days of pain and rituals to achieve. It is a snippet of a life which is 95% of the time in pain, darkness and indescribable torture.
That person who has OCD, is living in shame, confusion and unhappiness. That person is exhausted, and frightened and hates the part of their brain that makes them have to do things, or stops them from doing the things they want.
Chronic OCD does not go away, it sits there in the mind and plays up on it’s own accord. It is as if there is an evil entity playing inside your beautiful self. Like a punishment that never goes away. It rules every thought you have, it steps in with force and power, it conjures the deepest parts of fear that your brain can ever imagine.
To face it, to make it less, to challenge it, is to feel more fear than any human should ever have to go through. The fear puts up a huge firewall that is impossible to walk through. Every counter thought that brings some relief or ease, no matter how crazy or how ever long it takes to go through, is preferable than the OCD thought producing fear. This is why people who suffer, and I mean really, really suffer find themselves in loops and behaviors that they know are mad, they know are not really helping and the snow balls gathers and gathers and gathers until you are literally drowning in your own mind. But still this is better than walking through the firewall.
To parent a child with chronic OCD is to feel hopeless, responsible, entangled. We feel blame, shame, despair, every single day. We wish we could take the pain from our child, but we cannot. We wish we could share with others what really happens behind closed doors, but we cannot. We have thoughts of death. We have thoughts of ending life so it can no longer take us.
We search every day and we lay out the options. Mainstream tell us this is wrong and the only way to beat it is to drug up and then face it if the drugs didn’t make things worse, which often they do. Calling an ambulance in the middle of the night might get us some nice emergency room Doctors, but the circle will eventual go round to the same old system. Alternatively we can seek our own ways, and there are many, but this comes at a great cost financially and that’s only if your patients will engage. More often that not, they will not, they cannot, they are scared to death of you taking away the control they have created through their OCD. They do not want to live with OCD, they cannot imagine life without it.
Can you understand the prison in the mind of a sufferer of chronic OCD? Can you understand the difficulties of the families who live a secret world of distress, anguish, pain and doubt, every, single moment of every single day?
Even to me, it is hard to make sense of, because there is no sense in OCD, just layers of the brain fighting to try and help itself from fear.
There are biological reasons for OCD. OCD is not always a simple explanation of a chemical imbalance. Genes, infections, deficiencies, immune systems. There are leading edge Doctors uncovering more and more in these areas every day. Our medical mainstreams are very, very far behind.
Sufferers of Chronic OCD cannot handle stressful situations where a ‘normal’ person will just pass on through. They are highly sensitive. They need space, respect, sympathy, love and understanding. They need to be able to talk about what goes on in their brains without judgement or common sense suggestions, because there is no common sense in OCD. They need others to know that the days when they are appearing OK, have come at great cost and will most likely suffer for many days after until the next time you see them laughing at school, or putting up a fun pic on instagram. If they cannot talk about it and do not want to talk about it, that must be respected too.
Everything, and I mean everything is effected by OCD when you have chronic OCD. It is a disability, a broken part of the brain. Imagine not being able to sit on a chair. Or tie your shoe laces, not because you are physically disabled, but because your brain just will not let you. Imagine spending nights awake in ritual, waiting for the sun to come up, alone, scared, exhausted. Imagine screaming in anguish and pain and frustration. Wanting to open your head and take your brain out. Imagine not being able to tell anyone any of this because you are ashamed. All day every day. All day, every day.
Now add in PDA.