National Chronic Invisibile Illness Awareness Week - Sept 8-14

Did you ever catch yourself looking at an overweight person riding on a scooter and think to yourself, "Gesh, if she'd get off that scooter and walk she wouldn't be so fat!" Of if you see a man who's overweight using the stairs think to yourself, "Goodness, someone should be using the stairs!" Most people do. The thing is, you're assuming that overweight person is that way because he/she is LAZY, when in fact he/she may have a chronic but invisible illness. How do I know? Because I'm one of those people who's been labeled many times as fat and lazy and I'm far from it.
My family is overweight, so I know that genetically I'm predisposed to it. Put my family and my husband's family in a room, all with their backs facing you, and you can sort them by family. The only exception is our youngest son. He fits my husband's family's body type - short and thin. My oldest looks like my family - overweight.

I've always fought my weight because of this genetic predisposition, so am I hyper-aware of it? Sure. I also am very aware that I am now obese. I hate to write that or even see it in print. How'd I get this way if I was hyper-vigilant against my crappy genes? A chronic, invisible, illness.

It started shortly after my youngest son was born - almost 21 years ago. I worked full time, had to go back when the baby was 5 weeks, and had a two year old. I was tired, so very tired. The doctor said it was just from being a new mom and working full-time. Then strange symptoms joined the fatigue. Tingling in my arms and legs - written off as repetitive stress syndrome in my hands because I designed websites for a living and therefore spent hours a day on the keyboard. I knew this wasn't the right diagnosis because the pain never went away even when I changed jobs or took the 5 weeks off with my son.

Then the year we had our youngest we bought a house, changed jobs, found out my father had terminal cancer, moved, and then buried my father, my symptoms got much worse and now I was having eye sight problems, pain in my joints, and lots of stomach disorders. They put me on anti-depressants and stomach medicine and told me to take 3 months off of work for a stress-related illness. Even with everything going on in my life I knew it was physical and not mental, but they just wouldn't listen to me.

When my symptoms didn't get better, even with the anti-depressant, they sent me to a psychiatrist. He decided that all of this was caused by repressed memories of child abuse - I didn't have repressed memories - I remember it all very well.

So the years went on with my Dr. finally throwing out the Chronic Fatigue diagnosis almost as if he was throwing me a bone. However, this diagnosis didn't come with new meds or anything that fixed my problems.

All through this I was still working fulltime and caring for two children plus husband. My husband was great at first, but as the weeks turned to months, and months to years, he got frustrated. Not so much at me, but at the doctors. He too knew it wasn't "all in my head."

My condition continued to go downhill until finally in 2000 I was bedridden for 3 months and as a result lost a job I loved. During that time I started having horrible migraines. Again, nothing could be found and I was treated for nothing. I started feeling better after three months and could work part-time, but I never felt completely well or rested.

The next 7 years I was bedridden off and on with more troubles walking, talking and thinking. My grandmother was dying from Alzheimer's, so again it was all attributed to stress.

In 2007 I started having multiple, reoccurring migraines. So many that they ordered a MRI to check for a brain tumor. They didn't find one, but they did find multiple brain lesions which after many more tests resulted in a diagnosis, finally! I have Multiple Sclerosis.

When the neurologist told me I was so happy that she asked if I really understood that MS in incurable and will probably eventually kill me. I said, "Yes, but you also told me I don't have brain cancer!" I also found out that I'm severely anemic with a kind that makes it hard for nutrients to be absorbed in the stomach as well as a severe vitamin B12 deficiency. No wonder I'm so dang tired!

So, after nearly 20 years of misdiagnosis, I finally had PROOF there WAS something wrong with me and that's PRICELESS. To be told continuously that you're nuts is no fun, especially when you know you're not!

I'm not currently being treated although there are a few meds that can help with the MS symptoms because I need to find a new neurologist. I don't care for the one I have and I want one that specializes in MS. I have to wait until the busy season for my website is over though.

During these 20-years I've become inactive because of MS. For every year I had it, I gained an average of 5 pounds so that's how I got to where I am now. Am I lazy? Nope, but exhausted, yes. Do I eat too much? Nope, but everything I eat goes to my bum because I can't exercise. Exercise leads me to exhaustion quicker. I have to think that had they diagnosed me years ago the ending result *MAY* have been different, but maybe not.

My mother has had both her knees replaced and gained weight because of it. She's still in pain after a year on one of her knees so she's gain about 40 pounds. My father in law had a hip replaced and gained 15 pounds. He's not overweight, but he suffers from the same prejudice as we do when people assume he's able bodied but uses a handicap placard to park. He can't walk very far on the new hip before it starts to hurt. His placard is temporary.

Anyway, to make a short story long, my specialty :) Please take a moment next time you hear your inner voice berating a "fat" person. You're one illness, accident, or surgery from being the person you're mocking.

Tags: awarness, chronic, end, fat, illess, ms, phobia, prejudice, week

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Comment by Redhead Mommy on November 16, 2008 at 1:58pm: Wow, tough break. But I understand what you say about having a disease that no one has any idea about. My mom has been struggling for years now. She lost about 80 lbs. from God only knows what and then had stomach surgery to take our 3/4 of her stomach due to ulcers, then my dad died and all the stomach stuff got worse and almost killed her again, some days she can't even leave the house. She been to specialist after specialist all supposed to be the best in Los Angeles...they all have been scratching their heads. They even sent her to a shrink a couple of times because they thought she was crazy. So far they have come up with milk allergies and GERD, but that doesn't cover all the symptoms. She said she started having symptoms after I was born and they were mild. I've had similar symptoms since my son was born and they started working me up on things, but then I got pregnant. So I'm going to have to wait until I have my son before they can run any other tests. It would be nice if we knew what she had. She's also adopted, so there is limited family medical history.

I hate the feeling of not knowing anything. I want my mom to get better and feel better.

I don't know very much about MS, but we do have a neighbor with it, and lately we haven't seen very much of him. I think his sister is taking care of him now.

Anyways, I babble. Nice to meet you!

Comment by Lisa Survillas on October 30, 2008 at 12:55pm: Connie...you know my heart goes out to you since my sister also deals with MS. However, genetic predisposition only means if you practice the same habits as your parents then you will have the same problems. And with these illnesses, many of them can be helped with nutrition and exercise...and remember I didn't say cured, I say helped. Stress and fear can take over our heads and our bodies if we let it. Now the farther along one is, the harder it is. That is why it is important to teach our kids nutritional habits that will help them in life so if and when an illness creeps in, they are equipet from the beginning not to let it take over. I know a lady with lupus, my sister with MS, my mom with a back problem that I can't remember the name of, and three children with ADD, and type 1 diabetes all being helped with nutrition and exercise. "Getting the right tools for the job" is your best defense. I am not saying you and others don't have troubles and my sister fights with weight too, but she and the others I know are not giving up their bodies and their lives to the disease...Stand Strong, Miracles Happen and so, be the one in a million.

Comment by Connie on September 30, 2008 at 12:27am: "When I gained nearly sixty pounds people said I needed to exercise more but I could barely walk across a room without falling."

Boy, can I relate to this! Weight...why do people feel it's ok to comment on it? I just don't get it.

Take care ((((HUGS))))
Connie

Comment by Jaimie Hernandez on September 15, 2008 at 10:44am: This is a wonderful post. My situation a bit different having diabetes but taking insulin makes my body think it has to store fat because insulin is a hormone. I exercise my butt off, watch my calories, my numbers from the doc. come back great but people do judge and assume I don't take care of myself because I am overweight still.....

Keep Pressin' :)

Comment by Christina Gayle on September 8, 2008 at 3:45pm: Thanks for sharing. I have Chronic Fatigue Syndrome, which is very hard to get doctors to take seriously, let alone other people.

Comment by Anne Marie Goodrich on September 8, 2008 at 3:30pm: Connie, thank you so much for sharing your story with us. I'm so sorry you felt you had to use the word "obese" because I don't think we should ever have to use words that make us feel even worse about ourselves. So you are more voluptuous now. I'm so sorry to hear you have MS, but I have a sister-in-law who does too, and I know what a relief it can be to have a diagnosis after suffering so many years. Thank you for your openness and for fostering understanding by sharing your own story about adversity and diversity.

Comment by Melissa Smallwood, Multi-Tasking Mama on September 7, 2008 at 5:17pm: Great post- I too have MS and am participating in the invisible illness week- will look forward to more posts and feel free to read mine too at www.multitaskingmama.com

Comment by Connie on September 7, 2008 at 1:30pm: Thanks for commenting. I thought no one was reading it :(

Comment by ConnieFoggles on September 7, 2008 at 1:15pm: Amen Sister! Great post about having an invisible illness and easy it is to judge people based on their appearance.

National Chronic Invisibile Illness Awareness Week - Sept 8-14

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