We talk about invisible diseases, and there are so many. These are the illnesses that are not obvious from the outside. My son would be using the electric shopping cart at the market and someone would tell him he was taking it from someone who needs it, or park in a handicap space and be told there was nothing wrong with him and needed the exercise if he would park down the aisle. On occasion, there was the triage nurse that looked at him and said that he looked fine and he was at the ER as a drug-seeker. And the time he was in the hospital and I wanted a referral to a doctor outside of our insurance to consult and I was told by the woman in the insurance department that I was trying to save my son’s life, and was told that I was being dramatic and denied the referral after going to his room and looking at him. These people had no idea about his many surgeries, his permanent G-tube that had been placed for three years, his constant pain from adhesions and having been placed inappropriately on a gurney for a surgery, that just a few years ago he weighed 230 lbs and at that time was 107 lb., that he hasn’t swallowed food in years, or that he goes sleepless every night due to his severe asthma and narcolepsy.
I do my best to bring awareness to invisible diseases because it is difficult to hear judgements constantly. Well, I have an invisible illness also. It is called POTS. Here is an article that gives some facts about this syndrome. I found it on Patients Count at: http://patientscount.org
POTS is much more than tachycardia
39 POTS patients at Baylor Medical Center were asked to report their symptoms, and here’s how it came out:
Symptoms reported by POTS patients:
Lightheadedness with standing 87%
Sensitivity to hot or cold temperature 87%
Concentration difficulty 77%
Facial flushing or rash 77%
Hands change color in the cold 74%
Morning exacerbation of symptoms 69%
Blurry vision 69%
Muscle cramping 69%
Lightheadedness with sitting 64%
Breathing difficulty 64%
Joint pain 62%
Word-finding difficulty 59%
Medication sensitivity 56%
Leg pain 56%
Memory difficulty 54%
Early-morning awakenings 51%
Night time awakenings 46%
Irritable bowel symptoms 46%
Loose joints/double-jointed 44%
Susceptibility to cold or infections 44%
Swallowing difficulty 41%
Iron deficiency anemia 39%
Lightheadedness with laying 36%
>2 medication allergies 33%
Hearing loss 28%
Family history of low blood pressure 28%
You probably wouldn’t be able to see many of these symptoms if I was to walk in a room, but I assure you I am having at least one to a few at that time. Thank you for reading.
4 thoughts on “YOU SURE DON’T LOOK SICK”
Goodness. Blessings to you and your son and all you go through. I have RA and fibro and have been labeled a “med seeker” a couple times and, honestly, it’s shitty. It’s awful that people have to deal with severe pain and suffer because someone doesn’t believe them.
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Yes, it is. Take care of yourself.
Some people are so incredibly rude. You never know what another person has experienced until you have been in their shoes.
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So true. They have no idea the pain they cause. It only takes a second to think before speaking.
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