It started in 2001, right after my youngest child, Ben, was born. I started noticing i hurt. I just hurt, everywhere. My back, my arms, my legs, the migraines increased, i felt awful.
For a long time, ias told it was recovering my the birth and trauma. I suffered HELLP Syndrome, a rare and deadly pre-eclampsia. My blood pressure was sky high, my liver was rupturing, my platelets were down to 7000 (normal is 150,000-400,000).
My thyroid died, so i was put on medication, and i struggled to stay awake, to be a functioning parent. But the pain continued to get worse.
So we started going to doctors, first my gp, and the ob/gyn. I had been dealing with endometriosis for years, maybe that was a cause....?
Then we moved. First in Indiana, where i had a full hysterectomy. The doctors there asked me if i was depressed, if i had friends, if i had a happy marriage....blah blah blah.
Moved to Nevada...more doctors. One doctor made Tim's day. His suggestion was that i needed more sex.
Doctors kept saying it was mental. I lost several friends when i cancelled events because i cancelled outings because i just hurt so much. People who barely knew me actually accused me of faking, saying i just didn't want to (fill in the blank). I was lazy, i didn't care about others, i wasn't a good pastors wife because a few times i didn't go to some event.
I am blessed, never once did my husband or children turn on me. Tim was and is, an amazing supporting husband. My kids did whatever they could to help me.
We moved back to VA, i was stressed, i was miserable, i was hurting. We had just gone through some horrible things and we just needed time to heal and find ourselves again.
Finally, a doctor LISTENED to me and gave me the diagnosis of Fibromyalgia. Tim and i went to a bookstore, grabbed every book on the subject and then sat in the cafe and read for hours. Tim turned to me and said "Honey, this is what you have been saying for years." Finally Finally FINALLY we had an answer. Chronic Fatigue was added to it and i felt vindicated.
We started searching medications and diets and a lot more.
There are days i hurt so much, i can't breathe. There are days i feel just fine and go to my sons races and out with friends and go to church with a smile on my face.
There are days, i can't get out of bed.
I can no longer work on Sundays in the children's program, because i don't know what my body is going to do that day. I no longer make plans unless it is with someone who understands my situation.
Thing is, i don't have a broken arm, or am forced in a wheelchair. To many, i look perfectly healthy, even on days that i ache.
Because of that, people laugh at me when i say i am sick, because, hey, i look healthy. The same goes for people with arthritis, lymphoma, and so many other illnesses.
Someone recently put a note on the car of a lady parked in the handicapped parking space, asking her if her handicap was her brain (yes, she had her little handicapped sign on her rear view mirror). My friend has Rheumatoid arthritis, and is often in so much pain, walking from the car to the grocery store exhausts her and after shopping, she often has to take medication and lay down for the rest of the day.
Another friend was having repeated seizures, but no diagnosis. Her (now ex) husband and even her children accused of her faking it. People saw her gardening in the yard and say "well, she can garden, how sick can she be?" A few years ago she had major brain surgery. She was "faking" it so well, she fooled a top neurosurgeon, who scheduled her for surgery immediately after watching her "fake seizure" on an mri.
I was messaged just a few days ago, someone asking me for help. Her body is raked with pain, but she is being told she is a hypochondriac.
The most famous diagnosis, you are depressed, take some happy pills and you will be fine.
I guess what i am saying is "Not so fast." If some has a cast on their arm, or is walking on crutches, every one is quick to jump in and help.
But when the ailment is invisible, so many people doubt you.
I used to wonder WHY this happened. What did God want from me? Then i realized - with the HELLP syndrome, i started a website to help others recovering from help and get support. People around me, including my own daughter, recognized someone with HELLP in the hospital and was able to help them. With fibro, i have met others with physical ailments and we support each other, and lean on each other, even shop for each other if necessary. We never doubt each other.
I thank God for the opportunity to help those around me and those across the world.
When you see someone sitting down, looking beat. Or when you see someone sitting in their car, looking pained, maybe asleep. Or when someone cancels plans, saying they just can't go...don't be so quick to judge.
They may hurt more than you can ever imagine.
I love you.
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