I guess its safe to say many people have experienced some sort of loss in their life from death of a loved one family or friend and loss of a job/career. Which is pretty normal wouldn't you think?
What no one prepares us is for
loss of health. No one grows up thinking, he I got until I am 33 of healthy years and bam I'm sick now. Wait a minute. My disease is invisible, am I really sick? How long can I hide what I have from everyone. How long can I let people know I am healthy when I am not.
Its really sad and pathetic to think that people who are not visibly sick should be visibly sick to obtain some sort of empathy. I have been visible disabled by using a cane for almost 3 years and still off and on. I tore the ligaments and tendons in my left ankle and then broke my right hand 2 weeks later so I had to hop on my right foot for 5 months. Then using my cane for almost 3 years. Now periodically I will still use it.
What is so sad is my silly ankle got way more empathy from people than any recognition for my invisible disease from people that know I have it. How a stranger will help me open my car door as I hop on one foot but as I scream on the floor in public in agony, pure hell. No one asks if I am ok??? Why is this? Who do people assimilate visual pain to non visual pain?
My son has Elhers Danlos Syndrome. An invisible disease. He can make it visual by showing certain traits. Elhers Danlos Syndrome is a connective skin tissue disorder. Basic simple traits are rubber elasticity skin, double jointed. Transparent skin that is baby soft. Non visual traits are aortic valve on his heart that leaks, bunions, and my son dislocating his hip and knees simply by getting out of bed which leaves him in constant pain. Now doctors have found three abnormalities in his spine. As we are waiting for a specialist appointment again to find out. So here is a tall handsome 6ft 3 16 yr old boy who appears very healthy to the eye. No one knows how much pain he is in 24/7. No one sees his IBS he deals with. No one sees his chronic migraines and tension headaches. They just see a tall handsome young man. My wife. Is Bi Polar. And to me is the most normal person I know. As kind as they get and I am a better man for just knowing her. Yet her mind tells her different. Makes her feel things that are not considered normal. Makes her feel a way she doesn't want to and relies on medication to make her feel stable which 99% of us totally take for granted. Its not simple. You can not just think of puppies and be happy. Its not like that. People do not see or treat mental illness as a disease. Most people just think well be happy. Ask Robin Williams.
And then there is me. I have Cluster Headaches. The worlds most painful disease known to medical science. Watching a 300 Lb+ man drop to the floor beg to die and punch myself repeatedly in the face to knock myself out for what? You didn't see me hit myself with a hammer, you didn't see me close the door on my finger. So why am I screaming at the top of my lungs wishing I was dead? You can not see what is happening in my head. Why? Its invisible. A disease no one has heard of. A disease that has had almost NO advocacy except patients. Zero empathy from non sufferers who have never heard of it and a disease I been told "Oh it cant be that bad, its just a headache. You didn't have to quit your job, quite your whining your broke." and then" your having brain surgery? oh uh maybe it is that bad".It was only when I walked around in public with 28 yes 28 staples in my head or I had wires protruding from my brain into the open that anyone aside from family looked at me with validity. Fucking sad isn't it.
I have friends with visible disabilities. They get it. They see what happens to me, my wife, my son and understand that when someone sees them. They get immediate empathy. Which they should. But most of them just want to be treated normal. Yes they appreciate a door being held open for them or assistance getting their coat on. Who wouldn't. Its common courtesy.
Since my disease is not visible. I do not need help. People with invisible disabilities need compassion. Not ignorance.
When we first get told we are sick, that we have this. That we have that. Everyone goes through the 5 stages of loss. Some never complete the 5 stages and get stuck in one of them. It is not our choice we get sick. But its our choice how to live sick because they tell you that you are sick but do not tell you how to live sick.
1. Denial. The why me stage or no it can't be. They have it all wrong. I am only 33. What do you mean there is no cure and i will die like this? Can't be....I must have something else.
2.Anger. Fuck the world, fuck everyone who doesn't believe me I am sick. Fuck
3. Bargaining: What if I diet? What if I exercise? What if it goes away? Ok Ill change my lifestyle maybe it will go away.
4.Depression: Knowing deep down in your soul that you are starting to feel lousy and see no joy in life because of the disease.
5.Acceptance. This one not many people get to. It took me YEARS to accept my CH. It did not really accept things until I accepted I no longer could work. That my life was forever changed and that I felt like a burden t society yet changed into an advocate for the disease. Acceptance comes in many stages. Its the most complicated yet the most simple. Once you realise that things will never be what they were, and to be grateful that things will be. Life will be much easier. Once you will not worry about hiding an invisible disease and accepting whatever peoples take of your disease is. If its sincerity or people think its fake. Or that people think you are playing it up. Its ok to let things, people, money go. Happiness isn't in possessions and whoever wasn't' there at your worst should not be there at your best. Its ok to move forward and be happy for yourself. its you with the disease not them. You can be sick, just don't be the disease. Being sick doesn't define who I am its a part of who I am. Its very much a part of my day and my family's day every day but it isn't my whole day. We, my family that is....tries to live the best we can with what we have. I see more people jealous of the life I have now more than the life I had and that must mean we are doing something right. That despite my and our pain we endure that people look at us and say we are doing something right. That we are living happier than some who have everything. I an attribute much of everything I have to my faith and love for my family.
Id like to add 2 more to the list.
6. It gets better( doesn't have to be visual)
7. Fall 7x....get up 8
Love and blessings
I suffer from EDS Type 3 and cluster headaches. Luckily my cluster headaches are not all the time, but come in cycles. They only last approx 3 minutes each, tho I do get 4 or 5 in a row usually. Yours sound so much worse, I really don't envy you. Invisible illnesses are so hard for others to understand. As for the loss thing, yes I agree, losing your health is like a bereavement, if only others understood that as well!ReplyDelete
Jules. Thank you for the kind words. I am not a neurologist but it sure sounds like you have symptoms of SUNCT not cluster headaches. Cluster headaches are 30 min to 3 hours long each. Not minutes. However I do empathise with you and the EDS. Invisible disease suckDelete