...from chronic diseases, and I am so glad to have your insight here. This experience sounds like lonely and scary. Did you have to pursue additional testing aggressively or were people more willing to listen to your symptoms because you are a nurse?

As someone who doesn't (currently) have any of these conditions, I'd welcome your advice on how appropriately to demonstrate support for friends with chronic conditions. My goal is to show interest in friends' conditions and comforts, without being invasive of their privacy. I realize everyone is different, but do you have any advice on things I really should or should not do if a friend is dealing with the ups and downs of such a condition?

Lisa Stone
BlogHer Co-founder
Surfette

Hi Lisa,

Thanks for the questions. As far as testing goes, I have been sick for over ten years with CFS....and I have had every test known to man....and then some. Being a nurse really doesn't help, because I usually don't mention it. I think in some cases it can have the opposite affect, in that the doctor may think you are a "know it all".

I think when we deal with friends that are suffering with a medical condition....just letting them know we are there for them is the most important thing. A while back I did a post on empathy on my CFS site....it talks about the need to have empathy....not sympathy for people. To me "empathy" is true compassion and concern, while "sympathy" feels a lot like judgment.

Thanks for the comment Lisa, I hope my response was helpful.

Catherine,

Excellent post! My mom had pernicious anemia, and this reminds me to go get checked. I've been chocking up my poor memory to distractibility and disinterest, as well as stressors, so I'm wondering now if I'm discounting the real problem. Thank you!

A great topic would also be interstitial cystitis. I think that a lot of women are affected by it. I came across it in some transcription work that I do, and I think that it may be a reason for a lot of pain I've had for years. I understand that there are new treatments, as well. Could you do something on that problem?

Best of luck! Keep up the good work.

Galvanized

I know what it's like to have a series of symptoms that baffle doctors and have them tell you it's normal while you only get worse. Memory loss, how terrifying! So glad they finally figured it out.

I also know what you mean by having what seem to be invisible diseases, illnesses that don't have obvious outward signs but make you tired, forgetful, or moody and are actual diseases backed up by diagnoses and blood work. My doctor mistakenly said I had Fibromyalgia once, and I immediately corrected him. Not because I thought it was the worse thing in the world, but because I was married at the time and knew the man I was married to would never be able to wrap his head around my having an illness like Fibromyalgia. He was having trouble with the possibility I might have Lupus. It turned out I did not. My health was failing, just not by Lupus.

One of the difficult aspects I find about facing illness is that you need to talk about it but no one wants to hear it and who wants to be a burden talking about his/her illness. So if you don't have a support group or therapist, you end up holding your feelings inside, something that a doctor will tell you is not good for your health. Keeping anxious feelings inside produces stress. Stress aggravates physical illness.

I look forward to reading your blogs.

"Love is liquid. Brew and be drunkards!" ~~Nordette And here's a link to the blog.

Your persistence in seeing different doctors truly paid off for you. Enjoy the blogging here!
Karen
"Life is too short to pout all the time."
A Deaf Mom Shares Her World
Commercials for your website!

I'm glad you've joined the team!

:-)

~Denise
Fast Times @ Homeschool High and Flamingo House Happenings

Welcome to BlogHer!

I had never heard of this illness before and I'm definitely interested in learning more.

I wonder if Pernicious Anemia and the non-existent B12 are related to some of the symptoms of Alzheimer's?

My grandfather suffered dementia and alzheimer's and I remember the frustration he had as well as family members, when his memory was fading.

I'm glad that you didn't give up until you got the proper diagnosis.

Thank you for sharing your story!

Dana from The Dana Files.

As your mother, I believe I have the right to toot your horn loudly. I've spent the last month or two telling people I had no idea how well you can write. It's all a wonderful surprise to me.

I love the road to discovery that you have chosen. Who would've thought that the little kid that would only eat hot dogs for several years growing up would grow up and become the voice of reason, understanding and light. Hope I haven't embarrassed you with the "hot dog" remark. I typed it and then thought, Oops, I guess the whole world knows about the hot dogs now.

But what a joy you have always been to me. Good luck in this new endeavor.

Love

Just wanted to add my welcome to everyone else's, your story is truly inspiring & I admire your strength.

Welcome, Catherine! I'm thrilled you'll be blogging here, and very much looking forward to your input, thoughts, and articles.

Birdie
Birdie's BlogHer Blog
Beauty Dish

I was once at a dinner party and I said, "I really think we each need to take charge of our own health--we can't count on our doctors to know exactly what we're experiencing." Many people at the table agreed, relaying stories similar to yours. Thanks for sharing.

Catherine,

Congratulations on the blogher gig - thats so fabulous!
Your journey has been an incredible one. I am awestruck just thinking about it.

I am already a fan of your Living With Chronic Fatigue Syndrome Blog....guess I will have to keep up with your posting here as well.

Oh and thanks for the endorsement. It's always good to know that someone out there thinks that I am great. And well, the feeling is mutual.

I'm so excited about being able to promote other women bloggers, especially ones that are creating awareness on important issues....like you. Keep up the great work!

Catherine Morgan
Women 4 Hope and Be The Change You Want To See In Yourself

The need to take and keep charge of our health and the care we receive is a lesson I have learned (like when my 'urgent' mammogram films were mistakenly sent to the hospital's archives) over the last year, as well.

Thank you for sharing your story. Your strength and positive attitude are both remarkable.

And to Lisa - Ask how your friend is doing (and really listen to the answer); provide entertaining (and amusing) diversions, offer help with concrete tasks (food, errands, doctor's appointments, cleaning) if you can; and most of all, continue to be her friend.

laurie
www.notjustaboutcancer.blogspot.com

All great advice....Thanks.

Catherine Morgan
Women 4 Hope and Be The Change You Want To See In Yourself

First of all, congratulations on your wonderful recovery! Your story is so important to share so that others realize that not giving up on the search for the right doctor and the right medication can pay off. Your effort to inform people about Chronic Fatigue Syndrome and Fibromyalgia is also very important because these diseases are so often misunderstood.

However my comment is prompted by the following thoughtful question from BlogHer co-founder Lisa Stone who asked:

...do you have any advice on things I really should or should not do if a friend is dealing with the ups and downs of such a condition?

I would like to offer an example of what not to do. Recently, circumstances prompted me in an e-mail exchange to mention to a woman who I know only slightly the fact that I have arthritis. What I do know of her leads me to believe that she is a compassionate, caring person who has the best intentions when she is interacting with others. However, her response to me was:

Arthritis often comes from not doing something that your Higher Self wants to be doing. If that resonates with you, you may want to ask yourself what that might be...

My (very condensed) response to her was:

No resonating here. Higher Self undoubtedly has un-plumbed psychological issues (who doesn't?), but I don't correlate those issues with arthritis. That is from disintegrating cartilage in my knees, as confirmed by x-rays taken yesterday. . . Even I could see the bone-on-bone contact, [which has a specific physiological cause].

Please understand that I am quite convinced that there is a powerful mind/body connection that affects our overall health, but I don't think we have a clue about what the direct causal relationships are. I am amazed at how often and how quickly certain illnesses are attributed by others some sort of psychological or spiritual issue.

Also, I have seen needless suffering on the part of patients who believe that they are responsible for their illnesses or for their failure to recover because they're just "not thinking right" or "don't want to get better" or "can't admit the 'real' reason" they have their problem. I know personally of a woman who was told that her Alzheimer's disease was a "punishment by God" for not leaving her emotionally abusive husband. Another woman who suffered from Lyme Disease was dismissed by a friend as someone who just "always has 'those' kinds of problems." I have a friend who recently had hip replacement surgery. Was her Higher Self trying to get her attention or had fifty years of dancing and skiing simply taken their toll? For how many years were people with ulcers told to "calm down," until the medical profession discovered an antibiotic that literally cured the vast majority of cases? Of course people with ulcers were agitated and tense; they hurt!

It's probably clear that I could rant on for quite some time about this topic, but my point is that unless you're a trained medical professional who sees in one of your patients that there could be a correlation between a psychological issue and a health problem (other than the now well-documented connection that stress makes just about everything worse), the last thing that suffering person wants to hear is that his or her "Higher Self" is just seeking attention.

You may have addressed this issue on your blogs, but if not, I think it's crucial to encourage people suffering from what I call "the invisible illnesses" (no cast on the leg, no cuts and bruises, etc.) to be prepared for comments that may make them feel that they are at fault. They are not.

And now I think I'll go drink some tea to calm down.

Best wishes for good health to all!

Cynthia Friedlob
Link TextThe Thoughtful Consumer

Jennifer McLean
Nascent Group / Credibility Branding
http://www.credibilitybrandingblog.com
Http://www.bigbookofyoublog.com

Hi Catherine,

What a great inspirational first post. I also left you a note of congratulations over at MyBlogLog and ran into you here rather coincidentally. Great gig... you deserve it! (My moniker there is ZennJenn for my new healing focused blog.)

I will be a regular reader of yours.

Best,
Jennifer

Dear Catherine,

I am so happy for you --- that you found your solution to an incredibly serious health problem (and one that would not be on the radar for most clinicians) AND that you are installed happily on the staff at BlogHer.

I certainly wish you well on both counts.

I also want to mention that my child and I are 17 year veterans of Chronic Fatigue Syndrome and Fibromyalgia --- January 1990 changed our lives.

Back then and for many years later, we were the ones tilting at windmills and getting told, "well if we find out what it is, we don't know what to do about it, so why try?"

Why! Maybe we'd like to have a chance at not sitting in the same place all day, barely being able to get up to go to the bathroom, and that was the first 6 months, for both of us. My husband would come home and take care of everything for us and set-up everything for the next day --- and he'd had open-heart surgery only months before.

I did read later that such traumatic events as his surgery can devastate the immunity of others in the family, from stress, to be at-risk for as much as 5 years later, just in those with normal health. All of us need to take-care during turmoil. We were struck down right away, when the stress was worst, and then my father died in the next December, so yet another trauma.

My child is now 28 and still does not have normal energy or resilience. Hard to be struck-down from an optimally healthy life at 10. I was obviously older and recovered even less well, but still amazingly, from where we started.

I haven't followed CFS and Fibromyalgia much over the years, mostly because I think if one can have optimal health (on a personal "best", as you say), then that's all you can do.

We both work at being the best we can be, and we respect our bodies and mind and nourish our spirit, as much as possible in a crazy world and life. We try to stop well before we collapse. It's hard to have to stop when everyone can do more.

I still have memory problems, too, and did not know if I had the double-whammy of menopause on top of it all, when most women get brain-fog. Now, at almost 61, I am well past menopause and still working hard with my mind every day to "use it or lose it", but it is no longer the absolutely phenomenal mind it was. I mourn it, but keep striving.

After 2 1/2 years, I will finally have health coverage again, so I will ask whoever my new doctor will be (I can't return to the same health plan), to do a B12 just in case, but we were very knowledgeable vegetarians, so I do not think that was contributing back then. Now we are piscatarians, so it should not be a factor, either.

I really appreciate you bringing up all of this, and I hope that you are aware of the important value of essential fatty acids (from hempseed, flax, avocado, virgin organic coconut oils) to help with both CFS and Fibromyalgia.

I wish you the best on your Journey, and I am hopeful that those with CFS and Fibromyalgia can make great progress with nutritional therapies.

Best to all ---
Margalite

P.S. Please visit me at: http://diabetesdietdialogue.wordpress.com
"Everyone knows someone who needs this information!" (TM)

Thanks for the kind words Margalite. I do try to grind fresh flax seed and put it in oatmeal in the mornings.

Catherine Morgan
Women 4 Hope and Be The Change You Want To See In Yourself