Hi, I’m Mcget. A 23 year old guy and I’m Sick, the thing is : NOBODY CAN SEE IT
I’m not a sick-looking person, not laying in a bed all day, sitting in a wheelchair. But I’m on medication and treatments in the hospitals and that’s the side nobody sees.
Most people say : you are young and young people are pure energy and healthy.
When I tell them I have a rare disease they say : no you are just lazy.
Well Do I look sick?
Now there is a difficult thing. There are a lot off different “Invincible Diseases “
I’m only telling my view and I will give you some information about my health issue.
(If there is someone with similar complaints and diseases, please contact me! I would love to come in contact with people with the same/sort like diseases )
When I was 15 my body was all bruised. I got in the hospital and the amount of Thrombocytes where to low (Ref. normal is 250-300 mine was 7) Blood transfusions and treatment where not working,
The body was breaking itself down, the White blood cells where overactive and seeing the body own blood as bad. When I was 18 they had it “Under control” thanks to a lot of heavy medication.
They stored it under the name of “ALPS-Like disease”. ALPS is a disease that comes in many forms, for now there are 368 different Mutations. But ‘mine’ is not in the list.
Information About ALPS
( https://en.wikipedia.org/wiki/Autoimmune_lymphoproliferative_syndrome )
When I was 20 they found something else. The liver was breaking itself down. So same problem, different place. They called it “Autoimmune Hepatitis” And that was a problem. Because. I was 20 so I should use drugs and drink a lot of alcohol. So it was my own fault. That’s what a lot of people said.
But I never used drugs, I never got drunk. I know I’m boring. Sorry! But that is something nobody wants to see.
Information about Autoimmune Hepatitis
( https://rarediseases.info.nih.gov/diseases/5871/autoimmune-hepatitis )
But, what does it with me?
Before this all gone bad I was a guy full of energy, no I have to plan everything in advance.
When I do this, I can’t do this. I need to spread my energy. Need to see everything in advance for the next 2 or 3 days. I sleep a lot, have no energy left to do a lot extra stuff.
In 2 years I have gone from a 50 Hour work week, going out and sports
to : work 2 days a week (15 hours max) and sitting in treatment.
Still I have friends that don’t want to see I’m not be able to go out all night after a day in the hospital.
“Yeah but come on, it’s just for a couple of hours.”
I know, but when I go out for 3 hours… it takes my body 6 to recover (and I don’t drink alcohol..)
When your body is sick it is constantly working on 150% to get itself better. And that takes energy.
I have periods when it is calm.. But when it all goes bad I lose weight, A LOT OF WEIGHT. Almost 7KG a week. And I do not change the diet. That’s the amount your body need to recover itself.
When my body is really messed up I sleep like 18 hours straight. Get up, shower, eat, and go back to sleep. And that’s not because we are lazy.
Because. I really want to do my passion, my job and ride my motorcycle but I just simply can’t do that..
The 2 thing I hope this MyTake will bring is:
1 . People with the same problems, the feeling people don’t understand the struggle. Will share their story. And maybe contact me.
2. to show people that you can’t see everything in a persons life. You can’t see how sick somebody is. Till you talk about it. And that is a Taboo or something. Talking to a sick person. If you really interested ASK about it. Most of us will tell you as much as we can.
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I am sorry that you have to endure this. I too have an Invisible Illness. I have a rare genetic connective tissue disease called Ehlers Danlos Syndrome. My joints are super flexible and are prone to dislocate. I have been in pain since I was 8 yet I look a lot younger than I am. I have gotten the you must be faking it or you are a hypochondriac. When I was working I had a coworker accuse me of forcing doctors to operate on me because I was having a lot of surgeries. I had a hip fracture and I came to work on crutches and my boss told me that I couldn't have sex because my pussy was broken to all of my fellow colleagues. I was forced from my job or I would be fired if I continued to miss time. The thing is that I have a lot of pride in myself so I rarely show to the unsuspecting outside public that I am sick. I recently had someone who knows about my illness tell me that they didn't think I looked sick and that I must have gotten good at sucking it up and hiding it from people I don't trust. The only person who has seen me at my true worst is my husband but no one else. I have found that people treat the chronically ill as if we are damaged goods. What they don't see is there are other qualities that we possess. Wishing you all the best.
I can relate to this.
The : "Awhh, They are damaged"
it's awful! We are not damaged, we are creative.. because most of the time we still get everything done. But with a lot of more challenges
If they can see it, it doesn't stop ignorance I promise.
When it's invisible you wish it was seen, as some form of validation, some form of recognition, when you have it seen you wish you could hide it for a day to stop the stares, to stop the ignorance from yourself and your family if you have them... It's a never ending battle until the day you stop fighting it... and by that I mean find an acceptance/way of peace within, part of that is the fact that you can't change ignorance, but you can live your life... no it's not easy, I had an invisible one too later another another very life changing one, and now I have both. I'm pretty much in my house 24/7 atm and it can be months before I see anyone but my sons that is painful to say I have a fairly large family also
I had ms from 13. i later had my neck held long story short.. the damage done, not only did i live the neck hold, but the artery damaged, filled with clots and ripped, the blood supply instantly cut off to my brain from my brain from it, which was instant brain damage, clots and blood had only my brain to flood into... sort of like cutting your throat internally. The damage was massive.
and what else I'll add is that your body is already fighting, working, going all out its way on the disease you have, what you do in life is the extra... the extra isn't going out with your friends etc that's the way i look at it anyway, and how i explained...