I am proud to share a note that my husband, Ed Burmeister, wrote last week. He initially posted it on Facebook only where it received a lot of attention and was shared more than 250 times. It really resonated with the community.
Therefore, I talked him into allowing me to post it here as well. I am blessed to have such a supportive and loving spouse.
Last Wednesday, I had a complete hip replacement. It was a short procedure (1-1/2hours). No general anesthesia required. I was out of bed the day of surgery and home after two days. On Monday, I started driving again and really could have done so on Saturday already. Yesterday, I returned to work. I was comfortably working away, largely free of pain. I walk without a limp and with no assistance and am pretty much unrestricted in my activities. I never needed narcotic painkillers after the surgery. Ibuprofen does the trick.
Well-wishing family, friends and colleagues sent cards, flowers and gift baskets. These were all nice to receive and I appreciated them. There have also been numerous and repeated inquiries about my progress. Just a lot of thoughtfulness all week.
Contrast this with the way Jeannette and her fellow ME patients are viewed and treated by the same cohorts. Their disease, myalgic encephalomyelitis, is many multiple times worse than what I went through and it is ongoing, in Jeannette’s case for over nine years now. Many others have been sick much longer, some for decades. ME patients will most likely be sick for life and they are typically getting worse, as ME is often progressive.
Most activities that others don’t think twice about are impossible for Jeannette. She cannot stand for more than just a few minutes. She cannot walk more than just a few blocks. Sometimes, she cannot walk one block. Her debilitation goes far beyond the effects on her mobility and reaches into every corner of our lives. She is never comfortable, not even for a few minutes. It is always just a matter of degree of the relentless misery. Jeannette’s only contact to the outside world, besides the infusion room, is Facebook. But her presence on social media is frequently judged by some (what her friend Dave, also an ME patient, calls) normal-health people. It is estimated that about 25% of ME patients are sicker than Jeannette, some to a point that is unimaginable to everybody who has not been around those who are near death.
Jeannette is unable to leave the house on most days, and then generally only to receive thrice-weekly infusions, and spends most of her time lying down. Even sitting is impossible for extended periods. If she ignores her limits, it comes at a big price in the form of feeling considerably worse. Last Wednesday, the day of my surgery, Jeannette had no choice but to sit in the hospital waiting room for hours. There was no way to elevate her legs, which would have helped somewhat. Her only alternative was to lie on the floor, which she has done at the airport and other places in the past, but couldn’t risk in a hospital due to her being immunocompromised. At the end of the day, she was at least as impaired as I was having just come out of major surgery. The next day, she was too sick to visit me in the hospital, for which she beat herself up. She wanted nothing more than to be there next to me in the recliner the hospital staff had kindly moved into my room to accommodate her disability. But she couldn’t. That day, she didn’t eat, she could hardly move or talk. It was her payback for the sin of being there for me on my day of surgery.
It breaks my heart to see what Jeannette and other ME patients go through every day of their lives due to being this sick. But something else is almost more intolerable and that is how society treats them.
The thing is, when she is able to go out to the doctor or for an occasional meal with me, Jeannette often looks normal, often fantastic actually, despite being quite sick because she rests up for her outings in order to be able to make them and she probably also operates on a fair amount of adrenaline when she does leave the house for which she pays dearly. There are times when her appearance matches her debilitation and she looks like death warmed over, but at those times, she is usually too sick to leave the house. Nobody sees it. When others see her on those better days, they simply cannot seem to take in the degree of suffering she endures on an ongoing basis. It is as if, despite her achievements, she has no credibility with society, which makes split-second assumptions about her health merely due to her particular diagnosis and what people think they know about it, which typically has very little to do with reality. At best, her disability is ignored. At worst, she isn’t believed. Hence, she does not receive flowers or gift baskets or cards wishing her well. Much worse, she does not receive the consideration and understanding that even a modest comprehension of her disease should provide.
I think it is as hard on her as the suffering from the disease to have to endure this constant indifference and complete lack of understanding by those around her. The absence of any validation of the degree of her disability and of any consideration for her special needs is, in and of itself, debilitating and robs Jeannette’s soul of the nourishment and support she so desperately needs.
The determination with which society refuses to acknowledge the severity of ME would be hard for me to believe if I didn’t witness it almost daily. A week after major surgery, I am multiple degrees less sick than Jeannette is almost every day, but–except for her fellow patients from whom she fortunately draws a lot of strength–nobody around her knows it. Worse, it seems that people don’t want to know it.
Thoughts About M.E. 
normal people don’t usually like people who are chronically ill. they either want you to get well or die. this is of course not everyone but the majority it seems…
Agreed.
How compassionate, how beautifully expressed! How loving!
And I find that feeling so understood, with such rare depth, is a powerfully healing taste of how much better one might feel if such compassion were more widespread.
Thankyou Ed, and Jeanette
Ditto.
Hip Surgery and ME: Society Has It Wrong
AND it is a simple, yet cruel and tragic truth about how wrong this all is . . .
Life goes on now in recovery for Edward Burmeister, and thankfully so.
Mr. Burmeister has kindly and generously
described the difference and devastation to life we as M.E. patients are LEFT with
— LEFT seemingly invisible to society — LEFT in terrible illness in isolation;
LEFT with NO real and effective treatment —
LEFT and DISregarded as if we do not exist.
And like Jeannette–when we INfrequently are out in the world–most often for medical
appointments–occasionally for something social — the world only sees us in that
minute snapshot — assuming from that snapshot and their own personal experiences,
taking for granted that our lives are free to be lived just like theirs.
The fact is — we have LOST that life / our lives — that LIFE that others LIVE …
taken for granted in being their NORM.
AND, our payback is HUGE — for stepping out into the world in that ‘snapshot.’
The WRETCHED disease of M.E. has stripped us of, and restricted us from the ability
to lead / live a normal life — and this IS more than tragic, for we have been marginalized
and supremely abused by the politics that are ‘warehousing’ and keeping M.E. — M.E./CFS
‘Under Wraps’ hiding the truth from medics and society.
Thank you to Edward and Jeannette Burmeister for sharing your experiences and fighting so
hard for the M.E. Community.
Important to note: M.E. is let / left / allowed to continue to spread to our loved ones far and wide across America and around the globe — horrifically and cruelly stealing life away from those stricken in its path!!!
This — compliments of HHS — not standing up to the BIOlogical truths surrounding M.E. — M.E./CFS.
Thank you for sharing this publicly, Jeannette. I hope a lot more healthy people read it.
Thank you, Ed, for validating our illness with such insight and compassion.
First of all, a big “thank you” to Ed for writing that essay! You really hit the nail on the head. My husband has made some of these same observations.
And another “thank you” to Jeanette for sharing Ed’s essay with us.
yes, yes, yes. i think we all know exactly what Ed is writing about. it is validating to read it, because someone understand, and yet it is so very sad to read it.
also, once, when i had a hurt wrist, i was shocked at the level of care and attention and support i got from the medical community and general public. (and then, amazingly enough, the hurt wrist got better. that was the biggest shocker of the experience. i’m not used to things getting better.)
thanks to Ed for writing this important piece.
separately, i worry that Jeannette’s health has gone downhill since valiantly fighting for us.
Thank you so much, Ed, for writing such a compassionate and empathetic essay about Jeannette’s suffering with ME/CFS. You articulated so well how it is to live with this disease. It’s so good, in tact, that I’m printing it out so that I can use some of these formulations when I try to explain what it’s like to suffer from this disease.
Right now I’m trying to figure out how to get needed dental work and take care of other medical appointments when I don’t have the stamina to get to the library two blocks away. How to do this is beyond me.
Take care of yourself, Jeannette. And best regards and thanks to Ed for this wonderful writing.
No one wants to know about suffering that close. A car crash they will slow down for, but a “body” crash of someone they actually know? There’s no comfort knowing about pain like that. They’ll say they don’t know what to say, which is true, they have no frame of reference. But they don’t think too long and hard about suffering nearby, either, because they’d rather count their blessings. It’s whistling past the graveyard, or in this case, the torture chamber in which Jeanette is trapped (her own body). They don’t want to know that when they see her tired and in pain, that’s a GOOD day because she could get out of the house to BE seen! If they really knew the truth, they would be parading Jeanette through the street like a superhero with you at her side. Thanks for this, Ed & Jeanette.
An amazing post – it really hits the nail on the head. It is so well written and understanding.
The way we are treated by society, friends, even family in some cases, and the medical profession, has been something I continually struggle to cope with emotionally.
The lack of interest, possibly disbelief, and the abandonment by people who were “friends” is absolutely soul-destroying. It is probably the main reason I still take anti depressants. (I wasn’t depressed to start with but everything that goes with this condition is truly appalling.)
My husband has said to me numerous times over the years :
“Anne – people don’t understand, they’re bored, and they’re just not interested” .
I think he was just trying to get me to accept the situation so I would stop feeling so upset about it. And not dwell on it.
But it hasn’t worked . . . !!
Thank you so much for posting this.
Anne Dean
PS. I’m going to re-blog this on my blog too. As its such a raw area for me. And this is written much better than I could ever do it.
Reblogged this on Your Jaw Never Gets Tired and commented:
I had to reblog this post.
It is from Jeanette Burmeister’s blog which is called
http://www.thoughtsaboutme.com.
And it is written by her husband Ed Burmeister.
It is about one of the worst, most painful issues, encountered by people with ME.
I so enjoyed your husband’s letter. Would it be alright to share this on my Facebook page and/or to forward this letter to my family who ignores my illness or worse, chastises me for it?
Thank you so much. I am living with ME and I live alone without family support, encouragement, etc. My husband left me when I became truly incapacitated.
I am so sorry, Kate! Too many patients live without any support. Too many relationships don’t survive this disease. It breaks my heart to hear about it.
Yes, please feel free to share it.
Jeanette, you married a gem!
Amen! 🙂
Reblogged this on The Other Side Of The Stretcher.
I don’t know what else to say to add to the amazing comments made prior to mine. You all have said it all. It is saddening that so many not only suffer the effects of this disgusting, debilitating disease, but also have to suffer the indignity and loss of friends and family, and the medical community’s respect and recognition as having a real illness.
Jeannette, your husband is the standard-bearer for all those who appreciate and care for their ill wives/significant others. His letter is so much from the depths of his heart. I hope, after reading it, many friends and families of ME patients who have turned away, may turn back toward the patients.
As many others, I wish you many blessings you so much deserve.
Reblogged this on Sunshinebright.
Reblogged this on Utting-Wolff Spouts and commented:
I find this blog post by Jeanette’s husband who recently underwent hip surgery important for a number of good reasons. My own comparison would be that of a cancer patient (myself in my teens) and that of an ME sufferer (myself in my late teens up to now). My decade-long experience of societal and medical attitudes can be summed up as follows: ”When ill either get well or die but make up your mind. Do not linger”. This attitude appears to permeate most medical professionals I have encountered and it is detrimental to how the chronically ill are perceived and treated by society as a whole. Abuse quickly becomes systematic and is, in fact, institutionalised. A life of exclusion awaits and sufferers are blamed for their illness as if they were morally inferior beings. Of course there are no flowers or expressions of sympathy for the chronically ill. It is as simple and as cruel as that. Claudia for Utting-Wolff Spouts
I didn’t mean to be anonymous, but I’m not. I’m Kathy D. and I wrote a message thanking
your spouse for articulating our disease so well and being so compassionate and empathetic.
I’m trying to figure out how to get dental and medical appointments when I haven’t been able to do food shopping or get to the library nearby.
I guess it takes so much rest. I have had this disease for years and I’m still amazed at
how limiting it can be.
There is sometimes provision for a dentist to visit in the home. Ask around the different surgeries or contact a local disabilities charity. Hope this helps. 🙂
How wonderful of your lovely husband to write this! He’s a Champion, stick with him.
Jane
Human cruelty and destruction of life on a massive scale as it is.
This neglect and dismissal is all so verrry verrry horrifically wrong . . . 😦
We need more Healthy people to be understanding of ME/CFS Fibromyalgia, Multiple Chemical Sensitivity, and all the other down played “hidden Illnesses”. It was nice to see your husbands post on the fact that he sees the truth. I’ve cruised the blogs on facebook, and i haven’t seen anyone that doesn’t have the illnesses stand up to voice the truth! We aren’t making this stuff up! I’m so tired of being JUDGED by people that don’t have a clue. It’s double abuse! All because of the evil greed that has been controlling this world. I almost don’t believe your husband wrote this, because it’s too good to be true. I will believe because It really made my day! Tears of joy that your husband gets it! God Bless you & your husband!
Reblogged this on Laura's pen and commented:
Great post from the partner of an ME sufferer comparing the compassion he received after a hip operation to the indifference received by those with ME
Jeannette–this is an excellent post for the coming up May 12th M.E. Awareness Day — so telling !!
I came across this on Pinterest but I’m glad to find thevsource! 🙂
Reblogged this on and commented:
How do we respond to others’ health problems? With cards and flowers and promises of support and get well wishes? Or with suspicion and judgement and oblivion and avoidance? Maybe it depends on the nature of theur health problem. Maybe we only perceive the visible as ‘real’. Maybe we only understand what is required of us as onlookers and wellwishers in what is really quite a narrow spectrum of health problems. Maybe we don’t have the rnergy or understanding or commitment to be there for the ‘long haul’. Maybe we only understand two outcomes of illness: cure or die. Maybe we need to learn, to be taught, to train ourselves to see, understand and accept a bigger picture, a bigger model of illness.
Yep, I know that degree of ME all too well. I’ve had moderate-severe ME/CFS for 21 years without a day of reprieve..and many of those years was severe (I call it the abyss). Horrible disease. I’m thankful to be at the mild-moderate level now, but I know that can change at any time, be it from something I did, didn’t do, or had nothing to with at all. Your story is right on with what we deal with. Best of all is your empathy and compassion. Inspiring. Thank you for sharing.
Reblogged this on Linda Williams Stirling and commented:
An excellent article from the husband of a woman with ME, contrasting her illness with his major surgery for a hip replacement, and how differently each is viewed and treated by society. It’s very good. I hope you take the time to read it. Please understand ME.
thank you. this is so true