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How do you get family and friends to understand this CFS?

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Chronic Fatigue Syndrome
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Posted 6/2/2013 10:25 AM (GMT -6)
This has probably been on here already but I get too tired trying to read everything. People dont get this disease. My husband thinks if I just go slow and steady like him (he is tired too) that I can keep going! One of my sisters is tired out from her job a lot so thinks I should just keep going and be strong like she is? They feel I am weak about it. Or maybe lazy? If they could only go through the terrible flu part after trying to keep up? Is there anything I can say to them? I let them read things on CFS and that doesnt help. I know they feel it is sometimes just me being me. Yet...they can remember when I was well and could do it all in life events. Help? eyes
Posted 6/3/2013 10:12 AM (GMT -6)
First off littlemama33, as long as You know you have a CHRONIC Illness that requires rest and attention from a Dr. you are doing well for yourself and quite honestly if your family doesn't beleive you, that's their selfish issues. I know that sounded harsh smhair but that's a pet peeve of mine, propably because I've been lucky, I was sick for 3 years Before I got EBV/CFS so my family including my "mostly" grown children never doubted me for a minute. Enough about me, does anyone else in your family have any kind of chronic illness, arthritis, thyroid issues etc., looking for an ali even if its a 3rd cousin or someone outside the family, I don't know if Chronic Illness Groups are a possibility for you but you can find info on the net and you might even find an online one idea Also if you have a Dr. that acknowledges your illness you could have your husband at least come with you to your next appt. and let the doc. explain what you are and are not capable of. I'm single but i know some other married people on this forum have had success with that. I hope I was of some help and Keep In Touch, we ALWAYS understand. :-)
Posted 6/3/2013 11:26 AM (GMT -6)
Thank you so much for writing me, I really appreciate it. I like your advice and may do some of it. I hope others can read this now and hear your wise words. It feels good to have someone care ...thanks again.
Posted 7/23/2013 3:49 PM (GMT -6)
I don't bother with getting people to understand. They likely won't.

Because CFS is a syndrome rather than a disease, there can be many things causing it. These can be different for each individual, as obviously our bodies are all unique. A lot of people with CFS, can go on to be diagnosed with something else that was the cause, or at least one of their causes.

Tests for cortisol and adrenal problems are essential
Thyroid tests are essential
Lyme disease has shown positive for many, so their diagnosis switches to Lyme.

I believe a person should always keep digging for what is causing their problems, and not leaving it in the hands of others. Everyone deserves to be well and healthy and free of CFS and illness.

At least when you do a deep battery of tests, its easier to explain to someone whats wrong. Way easier than simply saying CFS. Tests help to validate it and give people a better way to explain to others, possible reasons for their CFS.

Never stop searching.
Posted 7/23/2013 4:02 PM (GMT -6)
It can be really frustrating, can't it?!

I get Occupational Therapy to help me manage my conditions, and what really helped me to get my family to understand was this: I took my parents to see my Occupational Therapist. He explained to them that I need to conserve energy as much as possible, that I need much more rest than the average person to make up for poor sleep, that I need to alternate physical activities with mental activities and besides that take a break between each activity, and so on... Having the health professional explain made a much bigger impact on my parents than just myself explaining it ever did.

Look up the spoon theory; I used this to help explain things to my sister. It actually helped.

If you go to the trouble of getting one of your health professionals to explain it, or using the spoon theory, and the person still doesn't get it - then what is written in the posts above mine applies.
Posted 7/23/2013 4:16 PM (GMT -6)
I can second the spoon theory. excellent video/slide show online well worth watching.

Sums it up to a T!!!
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