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A former clinical psychologist and sailor, I've had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 1990 and have been almost completely housebound, with both neurological and immune system symptoms, all of that time. ME/CFS is a serious, long-term illness that affects many body systems. While each year has come with more than its share of difficulties, this past year was loaded with extensive dental work, back problems, and extended voice loss (I also have muscle tension dysphonia).
 
I had a small break and hoped nothing further would hit when suddenly a bout of vertigo pinned me down and has left me holding onto things in order to move across a room. My survival mantra is "this, too, shall pass," and I give thanks to wiser teachers than myself in attempting to let that mantra sustain me.
 
My hope is that this year I'll have better days and more of them in a row--days when I'm not too exhausted or swimmy-headed to take my power chair for a small ride outside. My hope is that I won't let frustration or discouragement drag me down and that my poetry will continue to lift me into higher places.
 
And my hope, besides dealing with adverse times better myself, is that I will no longer have to explain this illness to any new doctor I might have to see. I hope I will no longer see hidden eye rolls from new (to me) health practitioners who still think this illness isn't real, or doctors who toss aside any educational information I might bring with me. I hope I won't see a diagnosis of "emotional problems" reflected in their faces.
 
Yes, I want a better year healthwise, but it's also time for this disease to be taught routinely in medical schools, so that doctors (aside from my internist and specialist) can tell me new things about it rather than vice versa. I hope very much for respect and assistance without fighting for it.
 
Pris Campbell
Lake Worth, Florida 

Comments   

# Barb Reinhold 2019-01-18 22:54
I don’t have ME/CFS, but I have a friend who does. I’ve watched her suffer for years, only to be told by doctors that it’s not a “real illness” and sent to see a psychiatrist. That is exactly what MDs told MS patients for many decades, dismissing their symptoms as “hysterical paralysis.” And since both MS and ME/CFS are more prevalent in women than men, the symptoms of ME/CFS must, of course, be psychosomatic, they reason. Sadly, many female MDs share that mindset. As a variation on this theme, I have bipolar disorder and was once told by a (female) faculty member at a major teaching hospital that I had a “simple cold,” patted on the shoulder, and told to “go home, take your lithium and get some sleep.” Two days later I was diagnosed with double pneumonia by an ER MD at same hospital. I truly empathize with you. I wish doctors would open their minds, listen to patients, and stop judging and dismissing physically ill people as hysterics.
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# Pris Campbell 2019-01-19 06:40
Barb, so true about the unbelieving mindset of too many doctors with women. Your pneumonia story is like my three trips to the ER, when well, with mind blowing abdominal cramps. I was told I was ‘constipated’. The third time I sent to a different hoslital and was rushed in for surgery. My appendix was on the verge of ruoturing. Thank you fkr understanding how difficult this illness is.
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# Anna Zapp 2019-01-05 13:45
Thank you so much Pris for speaking your truth. Your accounting of this wretched, unrelenting illness needs to be shouted from the roof tops, not swept under the rug b/c the doc’s know little or nothing about it. Mostly they write it off as depression, lack of exercise or mental affectations. Tha first year I was sick I heard this from 17 doc’s, many were specialists in a wide variety of fields.
I got really sick 2 days before a speaking engagement and had to tell my editor that I couldn't go on the trip and I was sick with something with no identity. It was my 58th birthday and my life as I’d known it was gone. That was 13 years ago. It is appalling that an illness like this that steals entire lives can be overlooked by our medical field. However there are some dedicated doc’s and researchers who are working very hard to find a cause and a cure, so we have hope.
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# Pris Campbell 2019-01-05 15:03
Anna, like all of us, you lost so much and struggle just to keep your head above water. Like you, I'm glad for the few specialists, many unfortunately aging rapidly now, who dedicated their professions to research and finding, if not cures, some things to help ameliorate. If not for them, we would be on our own completely.
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# Anna Zapp 2019-01-05 23:25
Yes, thank goodness for those docs and reasearchers who have helped us all in many ways, and docs like my GP, who is interested in learning all she can about ME/CFS.
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# Pat Ricci 2019-01-04 16:39
Thanks for speaking your truth, Pris. This month marks my 30th anniversary of being hit by ME/CFS. Back then I was told I was too young to be sick. Now that my 60th birthday is approaching I've heard, well, you're getting older, as if my illness was like normal aging...NOT! Sometimes it seems we can't win but nevertheless, we keep on trying...keep on hoping...and keep on living the best life we can in spite of it, and you're a great example to others.
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# Pris Campbell 2019-01-04 16:55
Pat, I had an elderly acupuncturist tell me in my late fifties that I was suffering from early ‘old person’s disease’ and I just had to try harder. Oh my. You inspire me, too. Today is one of my set back days so I’m reminding myself I WILL get through this.
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# Kris 2019-01-03 18:06
Thanks for sharing, Pris!!!
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# Pris Campbell 2019-01-04 05:54
Thanks for taking the time to read it.
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# Martha Wallace 2019-01-03 17:36
Thanks for this article, Pris. It strikes me how little we hope for but continue to hope. I too hope for more understanding and knowledge from my medical team members. Thanks for articulating our circumstances so well.
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# Pris Campbell 2019-01-03 19:39
Yes, we once flew to the moon. Now we dream of it.
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# Marilyn Barton 2019-01-03 17:25
If Alzheimer's patients are able to learn how to use a computer by using their eyes, why isn't there more attention, research and resources being utilized by the medical community to education themselves about ME/CFS?
Some severely affected ME/CFS patients commit suicide.

PLEASE HELP RESEARCH & RID OUR WORLD OF THIS DISEASE!!!!!!!! !!!!!!!!!!
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# Pris Campbell 2019-01-03 17:52
I don’t understand it either, Marilyn. Yes, quite a few people have it too bad to get out of ned and have to be fed. And yes, the suicides from the despair of never being nelped or even seen.
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# Margarer Walker 2019-01-03 17:24
This devastating illness changed my life overnight from active and busy to barely able to walk to the bathroom and back. That was almost 10 years ago. After dozens of doctors I finally made my way to one of the few specialists in the US. I won’t go to the ER because I am so often dismissed as a “nutcase” I no longer tell doctors of this diagnosis because the eyerollls are so hurtful. I take many intormation they ignore - except for my wonderful primary care doc who tries so hard to help. Pris, thank you, for all of us with ME/CFS, for this essay.
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# Pris Campbell 2019-01-03 18:44
Margaret, I only tell on a ‘need to’ basis, too. The prejudice can flatten you.
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# Melinda Maxwell 2019-01-03 14:17
This is so true Pris. As a physical therapist now on disability due to CFS/ME I have seen things from a patient’s perspective. My hope is that one day all the skepticism and ignorance about this illness will be replaced with compassion and understanding. Thank goodness I have a specialist who is an expert in the field. Others are not so lucky.
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# Pris Campbell 2019-01-03 15:20
Melinda, we truly are among the minority with a doctor who understands this illness so completely.
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# Sue 2019-01-03 13:15
Oh, Pris, how true - all of it. I had an allergy/immunol ogy fellow tell me she’d never heard of ME/CFS. I was heartbroken. This was at an academic teaching hospital too. I wish you, and all of us, a better 2019.
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# Pris Campbell 2019-01-03 16:21
Sue, I had gwo older cousins who worked in teaching hospitals. Not only did they not know about it they became quite critical of my inability to do things.
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# Linda S Duffie 2019-01-03 13:05
What great hopes for the new year. I, too, have grown weary of bringing educational materials to an appointment and wondering if it will ever be read, let alone be remembered. I have two docs that still tell me to exercise more. I think I've found a replacement for one of them. ME/CFS is such a cruel disease. If only the medical community would wake up ands see the millions missing.
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# Pris Campbell 2019-01-03 14:47
Linda, I hope for that awakening daily.
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