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09/22/2023
Letting Go of the ‘Could Haves’ and ‘Should Haves’ When You’re Disabled
By: B.L. Acker
The author relates how she and her husband had a minor accomplishment that she wanted to celebrate but didn’t know what to call it. So she decided to investigate and found out that there is a holiday in July called Toss Away the “Could Haves” and “Should haves” which made an impression on her as someone being disabled with a chronic illness.
Although the author was specifically looking for a holiday in July that fits what she was looking for and entitled Tossing Away ‘Could Haves’ or ‘Should haves’., these are issues that can really be addressed any time as they are lurking around in the background all the time and pop into your head when you least expect it.
To read how the author found a way to handle her issues, please go to:
"My life may not be what I once envisioned it to be, but I can find other ways for it to be fulfilling."
09/16/2023
What You Should Know About Chronic Illness-Induced PTSD
By: Renee Fabian
When I saw the heading of this article, my first instinct was to dismiss it. However, as I started scanning the article, I realized that what the author was explaining about chronic illness and PTSD made not only sense but is what is experienced by chronically ill people in a variety of ways.
Trauma, as a result of living with a chronic illness, can cause illness-induced PTSD. What healthy people take in their stride, is a major event for someone chronically event and the author’s way of explaining it is comforting and inspiring.
Lydia
To read Renee’s article, please go to:
Here's what you need to know about illness-induced PTSD.
09/08/2023
Why We Need to Stop Ignoring the Trauma of
Being Diagnosed With a Chronic Illness
By: Karandeep Kaur
The author points out that whenever people think of a traumatic event, it is usually equated with an accident or temporary incident. What is not thought of is that those who are diagnosed with a chronic illness do not only experience temporary trauma but constantly have occasions when trauma fills their lives.
Karandeep raises awareness regarding those who need recognition for being chronically ill.
To read Karandeep’s story, please go to:
"Loneliness and isolation are often key challenges of the trauma of illness."
08/30/2023
Dear Friends:
For those who are not well enough to read an entire article, please find herewith a short summary of Dr. Hanson’s article. For those who are able to, links to the entire studies are also posted herewith.
Lydia
PLOS PATHOGENS
OPEN ACCESS
The viral origin of myalgic Encephalomyelitis / chronic fatigue syndrome (ME/CFS)
By: Maureen R. Hanson, Ph.D.
Published: August 17, 2023
Dr. Hanson outlines when Myalgic Encephalomyelitis (ME) originated from and why, and when the U.S. Centers for Disease Control (CDC) convened an extramural committee to change the name to Chronic Fatigue Syndrome (CFS). For this reason, in this study a compromise name ME/CFS is used in this article.
Dr. Hanson addresses the following areas:
Can any infection lead to ME/CFS?
Dr. Hanson states there is actually no proof that multiple different pathogens can cause ME/CFS but that this hypothesis persists largely due to over-interpretation of data from at least 2 studies and the limited evidence depends on how ME/CFS is defined.
Dr. Hanson’s explains that currently research groups and clinicians typically use any one of 3 definitions: the so-called Fukuda criteria (CDC’s 1988 criteria), the Canadian Consensus Criteria (2003) (CCC) and criteria suggested by the IOM committee. Of these, the Fukuda criteria are considered somewhat obsolete.
Dr. Hanson outlines studies from a 2006 Australian study, recently-produced US data and another 2009 study from Norway which leans towards other viruses could be instigators of ME/CFS.
Why is the enterovirus family the most likely culprit in ME/CFS?
Dr. Hanson states that history offers persuasive evidence to suspect the enterovirus (EV) family of causing ME/CFS. Both circumstantial and direct evidence supports such a conclusion, i.e. early outbreaks of ME/CFS coincided with outbreaks of polio which were caused by 3 members of the enterovirus C family. In addition, health professionals’ descriptions of that era are consistent with known enteroviral infections.
Dr. Byron Hyde associated EVs with past ME/CFS outbreaks and sporadic cases which were well documented by him and infectious disease specialist Dr. John Chia and colleagues have also provided compelling data on behalf of enteroviruses in the form of case histories and experimental data demonstrating chronic viral infection.
What is the relationship between human herpesviruses (HHVs) and ME/CFS?
Dr. Hanson states that a striking number of ME/CFS patients mention an acute infection with EBV or some other human herpesvirus (HHVJ) as the start of their illness. If someone has a long course of mononucleosis, an additional virus that may or may not cause symptoms might be necessary for induction of ME/CFS.
Infections with HHVs are common and lifelong but healthy people maintain viruses such as EBV in a latent state. However, herpesviruses commonly reactivate under a variety of stressful conditions or illnesses such as ME/CFS or acute SARS-CoV-2.
Should the post-SARS-CoV-2 infection syndromes be called “ME/CFS”?
The US government devised the name Post-Acute Sequalae of COVID-19 (PASC) to describe a post-acute illness syndrome suffered by people who endured this deadly virus PASC patients’ symptoms include observable damage to the heart, kidney, lungs or other organs, lung damage from invasive mechanical ventilation, blood clots, rashes, tinnitus, disturbances of taste and smell, as well as other symptoms.
While it may be correct that someone with post-COVID illness with symptoms diagnostic of ME/CFS, referring to post-COVID syndrome as ME/CFS will only confuse the scientific literature and cloud clinical trials. A study of acute COVID-19 resulted in classification of the cases into 4 subgroups and the identification of 12 core symptoms among 44 that were considered. One of the key ME/CFS symptoms – unrefreshing sleep – was not evaluated and the 12 core symptoms include ones that are not identified as core symptoms in any of the ME/CFS diagnostic criteria. Without more data, especially at the molecular level, it is currently unwarranted to conclude the 2 syndromes are identical.
Conclusion
Dr. Hanson states that ignoring the abundant evidence for EV involvement in ME/CFS has slowed research into the possible dire but hidden consequences of EV infections, including persistence in virus reservoirs. Recognizing that EVs are prime candidates for causing ME/CFS suggests how critical it is to pursue inquiries into this diverse virus family.
Staying Hopeful Amid Life With Severe Myalgic Encephalomyelitis (ME)
By: Naomi G.
August 8th was International Severe ME Awareness Day. Although that day is past, this article is being posted to remind us that although there are many of us with ME and FM, there are some of us who are even in worse shape with ME or FM who deserve to be recognized on their own. This is a reminder to those who are in that category that we do care and we will always keep them in our thoughts and prayers.
Noami G. lives in the United Kingdom. In her article, she relates what it is like to live with severe ME.
To read Naomi’s story, please go to:
"I've learned to enjoy my own company."
08/11/2023
When Disability Assistance Gets Complicated
By: Jennifer Burgmann
Jennifer lives in Vancouver, British Columbia and relates how being disabled and having to rely on government assistance, becomes complicated if you have another source of income.
In Jennifer’s story, she tells how when her husband also got ill and was unable to work, they managed. However, when her husband passed away, As a result, due to his previous career and pensions, she was managing until obstacles were put in her way which made any new income not as helpful as she thought it would be.
To read how her extra benefits affected any assistance she was receiving, please go to:
Income from other sources isn't always as helpful as it seems.
08/04/2023
What I’m Learning About Acceptance in Life With Disability
By: Steffie S.
Steffie relates how she wished that if people only knew what effort it took her to get to where she wanted to go, they would understand. She talks about what her doctor says to her about why she feels the way she does and how she wonders herself why she’s always at the back of the group.
Steffie’s story has a very familiar ring to it as she relates how she feels about herself.
To read Steffie’s story, please go to:
"I have time to rethink everything."
07/29/2023
Redefining the idea of Wellness When You Are Physically Unwell
By: Christina Baltais
Christina lives in Toronto, Ontario (Canada) and has ME/CFS for which she advocates to raise awareness to help herself and others.
All of us try to find a way of coping that works for us as individuals and so did Christina. In this article she outlines what she learned from a doctor that made sense to her as to what determines wellness.
It’s a long article but definitely worth reading.
To read Christina’s story, please go to:
"By incorporating and building on all fronts of wellness, I may be physically unwell, but I am well."
07/24/2023
24 Signs You’re Not ‘Just Tired,’ You Have Chronic Fatigue
By: Paige Wyant
Paige points out that when you have a chronic illness and you say you are tired, the healthy person you’re talking with is most likely to respond that they are too.
In this article are answers from those who are chronically ill with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome explain what ‘tired’ means and what it feels like.
To read this article, please go to:
"No matter how much sleep you get, it never goes away."
07/18/2023
9 Common Types of Guilt People With Chronic Illness Experience
By: Paige Wyant
Paige relates what the chronic illness community is grappling with that affects disabled people as much as the effects of their illness.
In this article Paige highlights 9 of the struggles disabled people deal with and how some have learned to cope.
To read this article, please go to:
And how to cope with each.
07/13/2023
Summer 2023 Newsletter - Quest 138
We are pleased to bring you the Summer 2023 edition of our Quest newsletter.
In this issue:
• Introduction
• Test Distinguishes ME and FM
• Covid and post-Covid
• Research Road Maps
• Canada Disability Benefit (Bill C-22)
• Patient Experiences from The Mighty
◦ Riding the Roller Coaster of Fluctuating Disability
◦ 7 Challenging Daily Decisions When You Live With Chronic Illness
◦ 17 Things I Don’t Admit on Bad Days With Chronic Fatigue
◦ To Anyone Afraid to Get a Disabled Placard Because You’re Worried About Judgment
To view, please go to:
07/04/2023
9 Common Types of Guilt People With Chronic Illness Experience
By: Paige Wyatt
This is rather a lengthy article but one that all of us can identify with. In this story are individuals who are dealing with the guilt and other relevant issues brought on by a chronic illness.
This article points out that although it is difficult to live with a chronic illness, the mental and emotional side effects it produces takes an extra toll on the ill person.
To read this story, please go to:
And how to cope with each.
06/29/2023
CRA ANNOUNCEMENT
Canada Revenue Agency has announced what benefits are coming up over the summertime.
• Interim Canada Dental Benefit opens July 1, 2023;
• New grocery benefit to be issued July 1, 2023;
• Advanced Canada Workers Benefit now year-round; and
• Most Atlantic provinces get the pollution price rebate (Climate Action Incentive) payment starting in July.
•
For complete details and further information, please go to:
We know how fast a Canada summer can pass us by, so we wanted to let you know about the Canada Revenue Agency (CRA)’s good news before you head off-grid to enjoy all of the natural wonders Canada has to offer!
06/26/2023
The Difference Between Chronic Fatigue and Chronic Fatigue Syndrome
By: Siobhan Simper
Siobhan explains how chronic fatigue is not Chronic Fatigue Syndrome (ME/CFS) and why. It’s a bit of a lengthy article but well worth reading. She relates how some of the misconceptions of ME/CFS are caused because of the misunderstandings between chronic fatigue and chronic fatigue syndrome i.e. being simply tired and lacking sleep vs
Siobhan also goes into some detail as to the different types of tiredness causes ME/CFS to get lost in the shuffle. Although not mentioned in this article, Fibromyalgia (FM) also gets lost in the misconceptions as it is not only about pain and many with ME/CFS also are diagnosed with FM and vice-versa.
To read Siobhan’s article and her suggestion how this confusion can be solved, please go to:
"It’s not a tack-on at the end of a list of multiple illnesses; it is an illness in its own right with a very specific set of symptoms."
06/20/2023
To Anyone Afraid to Get a Disabled Placard Because You’re Worried About Judgment
By: Stefani Shea
Stefani relates how difficult it is for someone with a chronic illness to get a disability sticker to help with mobility issues. Not from the doctor but from herself. She never considered getting a note from her doctor to apply for such a sticker until she started having mobility issues walking.
In this article, Stefani tells how first of all it’s hard to admit to needing that kind of help to yourself and also how others may react. Stefani herself has had notes left on her car complaining about the use of the sticker.
For more details, and Stefani’s story, please go to:
"Don't let anyone diminish the choices you have to make to achieve a higher quality of life."
06/14/2023
18 Memes That Nail What It’s Like to Have ME/CFS
By: Paige Wyant
The author is using a visual way of explaining ME/CFS [Myalgic Encephalomyelitis / Chronic Fatigue Syndrome).
This might be the kind of article worth sharing with others to give them a better understanding of a person ill with ME/CFS and/or Fibromyalgia [ME/CFS and/or FM].
To view this article, please go to:
#12 is SO REAL.
06/07/2023
When You’re Too Sick to Clean Your Home
By: Lisa Prins
Lisa writes about being too ill to clean and how it makes her feel. Many of us who are in her position feel the same way. However, very few of us would ask for help or take it, if it is offered.
Just as there are many days when you find yourself choosing what you can do and what you must skip, many times chores fall by the wayside for the same reason.
To read Lisa’s article, please go to:
"If you are struggling and your health is taking all of your available energy right now, just know I'm sitting here too."
06/01/2023
17 Things I Don’t Admit on Bad Days With Chronic Fatigue
By: Erin Migdol
Every day a healthy person gets up and plans their day. No thought as to whether or not they are able to do what they plan out to do. It’s taken for granted that they can.
Someone with a chronic illness like ME/CFS and/or FM (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome} the challenge every morning what they can and cannot do that day.
In this article, the author lists what a person with a chronic illness is facing daily and the compromises they must make. Not only are they challenged by the lack of physical energy but also the mental energy they must spend to do their day.
To read Erin’s article, please go to:
"It's hard to cope with the soul-crushing fatigue but harder still are the expectations of those closest to us."
05/29/2023
Health Canada
News Release – May 29, 2023
Advancing on our Shared Priority of Connecting You to Modern Health Care
The Honourable Jean-Yves Duclos, Minister of Health , announced it is committed to working with the provinces, territories, and health partners to build a modern and well-connected world-class health care system.
Currently, the Health Minister states that only 1/3rd of Canadians can access their health information online nor can health care providers easily access or share health information.
Today the Health Minister unveiled a shared plan of ‘Connecting You To Modern Health Care' through Canada Health Infoway which is endorsed by federal, provincial and territorial governments, with the exception of Quebec.
For detailed information, please go to:
Today, the Honourable Jean-Yves Duclos, Minister of Health, unveiled the Pan-Canadian Interoperability Roadmap, which represents a key milestone to advance the Government’s commitment to secure access to electronic health information. The Roadmap, developed by Canada Health Infoway in collaboratio...
05/25/2023
What It Means to Experience ‘Payback’ With Chronic Fatigue Syndrome
By: Zoe B.
Zoe relates that one of the key diagnostic criteria for ME/CFS is post-exertional malaise [PEM] which she calls ‘Payback’. It is one of the hardest symptoms of ME/CFS for others to understand, unless you have experienced it.
Zoe explains what someone with ME/CFS may do to bring on ‘Payback’.
To read Zoe’s story, please go to:
"Sometimes this can last days, weeks or even months."
05/19/2023
The Challenge of Explaining How I Feel as Someone With CFS/ME
By: Emma England
Emma relates how difficult it is to live with ME/CFS as most of the time, she doesn’t look ill. Both she and her husband get frustrated with family and friends as they presume that as she looks well so she must be well.
In Emma’s article, she tries to explain what it feels like to be seen in public and how people with invisible illness are misjudged because of how they appear. Although this article is about ME/CFS, the same is experienced by those with FM or ME/CFS/FM.
To read Emma’s story, please go to:
"People may see me and think I look absolutely fine, whereas on the inside I am dealing with a debilitating chronic illness."
05/13/2023
31 Difficult Side Effects of Chronic Illness No One’s Talking about
By: Paige Wyant
The disability community was asked about side effects of their chronic illness no one talks about. Paige relates that many symptoms are left unspoken as they are deeply personal and uncomfortable to talk about.
As you know, that is a lot of weight to carry alone in your mind and on your shoulders. By keeping it to ourselves, however, we do not realize that by doing so we are presuming that you only personally are laden with those symptoms. This puts an extra weight onto your shoulders.
By sharing those thoughts with those who understand, you will know that contrary to what you thought, your symptoms are legitimate and experienced by others. They might have found ways to help them cope with some of those symptoms that may help you. Likewise, you may also have found ways that others could benefit from.
To read Paige’s article, please go to:
"No one ever really wants to talk about these symptoms..."
05/04/2023
7 Challenging Daily Decisions When You Live With Chronic Illness
By: Leslie Kiszka
Leslie writes about a subject that is not often talked about. The mental energy that gets spent in making decisions on activities of daily living.
People with ME and FM often ask themselves why they are so tired when they haven’t done anything. The answer is they have done things although maybe not physically.
It’s refreshing to read Leslie’s story wherein she explains the decisions a chronic illness person has to make every day when they have ME/FM.
To read Leslie’s story, please go to:
"I have to put serious consideration into much of what I choose to do because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie."
04/26/2023
Riding the Roller Coaster of Fluctuating Disability
By:EmeraldoMaz
The author believes that the majority of people see disability or chronic illness as black and white. Either you are completely disabled or you are not.
The author highlights what a disabled person goes through on a daily basis and what chronic means.
To read the author’s story, please go to:
How many of you have been asked something like, "I thought you were getting better?"
04/21/2023
NATIONAL ME/FM ACTION NETWORK turns 30
Spring 2023 Newsletter - Quest 137
In this special 30th anniversary edition, we look back at the Network's accomplishments over the past 30 years and reflect on the status of ME and FM over that period.
In this Issue:
• How the Network started
• Some Network Milestones
• Context
• After Thoughts
To view, please go to:
04/15/2023
When You’re Stuck in the Middle of ‘Sick’ and ‘Well’
By: Cherilyn Schutze
Cherilyn relates how she used to be a multi-tasking individual and how her world completely stopped when she became diagnosed with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome.
It is important to remember that although Cherilyn uses the word ‘Well’ to describe different times, it does not mean well and healthy. It just means better than on other days.
To read Cherilyn’s story, please go to:
"I am having some days where I feel almost 'normal.' That’s a tricky place to be."
04/03/2023
Why Reducing Stress Isn’t Easy for People With Chronic Illness
By: Alex Tomlinson
Alex relates about everyone talking about reducing stress in one’s life. However, no one considers the fact that having a chronic illness automatically brings stress into one’s life.
In this article, Alex discusses how she identifies the stressors and by doing so, how some can be eliminated.
To read Alex’ story, please go to:
"Stress reduction is absolutely nothing like what most people suggest."
03/27/2023
I’m chronically ill and can barely get enough financial assistance to survive
By: Alexandria Nassopoulos for CBC First Person
Alexandria lives in Montreal, Quebec, who is chronically ill with FM (fibromyalgia) and migraines. When she was on a social media, a pop-up news feed came to her attention on MAID (Medical Assistance in Dying).
Alexandria decided to check it out what that was all about and in her story she relates how she feels about MAID, her illness and the stigmas associated with her illness.
To read her story, please go to:
When filling out medical forms to continue receiving her social assistance, Alexandria Nassopoulos was left with the unsettling feeling that she could be eligible for medical assistance in dying.
03/21/2023
How It Feels to Finally Be Recognized as a Disabled Person
By: Simone DM
Simone struggled for 7 years before she was diagnosed with Myalgic Encephalomyelitis (ME) and Lyme Disease. Unbeknowst to her employer and to her friends and relatives, she was struggling every day. Her illness was invisible.
Simone lives in England and she relates how things changed for her when she was acknowledged as being disabled by getting disability benefits.
This is a familiar story but it makes one think about ‘what ifs’. Simone spells out how much different things could have been if her employer could have accommodated her instead of her hiding she was ill. Could it have saved her from becoming disabled long-term? Could it have saved her job and even let her recover?
To read Simone’s story, please go to:
"It makes me wonder why I was left to struggle for so long without help."
03/14/2023
The Weight of Living With Chronic Fatigue Syndrome
By: Bella Gray
Bella relates that not only does she have to deal with losing her life as she knew it but also her body. In her story, Bella talks about how she struggles through her days and pushing herself way beyond what she could handle.
Bella went through the stage of ‘if only I would to more of…….I would be better’. A self-bashing of why she is the way she has become.
Like all experiences with chronic illness, please remember what works for her may not necessarily work for you. Like all advice or suggestion, only you will know what’s best for you.
To read Bella’s story, please go to:
"I finally gave myself permission to stop."
03/06/2023
7 Things I Want People Who Are Newly Diagnosed With Chronic Illness to Know
By: Felicia Distad
Felicia titled her article for those who are newly diagnosed. However, the helpful advice she is sharing is really for anyone who has come down with a chronic illness.
There are certain elements of a chronic illness that need to be paid attention to as they can affect your daily life.
To read Felicia’s story, please go to:
Mighty contributor Felicia Distad shares advice for people who are newly diagnosed with chronic illness.
03/02/2023
Special Rental Benefit of $500 if you qualify
The federal government has announced a one time payment to low income renters. Here is the announcement.
One-time top-up to the Canada Housing Benefit
The one-time top-up to the Canada Housing Benefit aims to help low-income renters with the cost of renting. You may be eligible for a tax-free one-time payment of $500 if your income and the amount that you pay on rent qualify.
The Canada Revenue Agency (CRA) administers this one-time payment. To apply for this new federal one-time payment, you do not need to receive other housing benefits such as the Canada Housing Benefit, which is co-funded and delivered by the provinces and territories.
Applications are open until Friday, March 31, 2023.
Low income is defined as follows: In 2021, you had an adjusted family net income of:
$35,000 or less for families
$20,000 or less for individuals
For more requirements and to apply, go to
Find out who is eligible to apply for the tax-free one-time top-up payment for low-income renters.
02/25/2023
3 Ways I’m Untangling My Internalized Ableism
By: Christy Bloemendaal
Christy is 50 years old now and remembers her parents dressing up when they were younger going to parties dressed up in a way that older people would be like.
She remembers how funny she thought it was back then when her parents dressed up in grey wigs, with pillows stuffed into too large pants and using, wheelchairs, canes and walkers.
Now in the present, Christy had a revelation she wants to share with others. She learned something she was not aware of which opened her eyes about being disabled and getting older. She hopes by doing so it will help others to see more clearly and from a different perspective.
To read Christy’s story, please go to:
"You can make a change. Don't let how you erroneously viewed people in the past be how you continue to view them or yourself today."
02/08/2023
What My Marriage Looks Like as a Disabled Woman Married to a Non-Disabled Man
By: Carla
Carla felt she needed an angle to relate what it feels like to be a disabled person married to a healthy person as she considers her marriage to be basically normal.
In Carla’s story, she brings up the comments she faces and her husband’s reaction to them. She also explains how she does not consider her husband her caregiver and why that is important.
To read Carla’s story, please go to:
"He doesn’t have a disability and I do, but our life is remarkably similar to what life would be if I didn’t."
01/30/2023
The Paradox of Living With an Invisible Disability
By: Jason Feigen
Jason, in this article, is approaching “invisible disability” from the perspective of either choosing to be visible or invisible, depending upon the circumstances. In a way, many of us are doing this already consciously or unconsciously.
I never looked at it as a ‘choice’ but find the author’s take on “invisibility” worth noting.
To read Jason’s story, please go to:
"The longer we present ourselves as 'normal' and pain-free, the harder it can become for others to take our illnesses seriously."
01/23/2023
Winter 2023 Newsletter - Quest 135
We are pleased to bring you the Winter 2023 edition of our newsletter - Quest 135.
In this issue:
• Including ME/FM in Federal Mandates for 2023/4
o Introduction
o Abbreviations used in this newsletter:
o Health and Welfare Histor
o Health Care
o Disability
Measuring Disability in Canada
Disability Inclusion Action Plan Infographic
• Correspondence
o Letter to Canada’s Minister of Health
o Letter to Canada’s Minister for Disability Inclusion
o Letter to Ontario Health Minister
o Email Correspondence with CIHR and Science Advisor re Long-Covid
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QUESTION: Why is the Canada Goose in the logo of the National ME/FM Action Network?
ANSWER: When the Canada Geese fly South for the winter, they fly in "V" formation. As each bird flaps its Wings, it creates an Uplift for the bird immediately following. By flying in "V" formation, the whole flock adds at least 71% greater flying range, than if each bird flew on its own.
Geese honk from behind to Encourage those up Front to keep up their Speed. Please remember that none of us can go it alone, we need your encouragement in the manner that you are able to do so. For some it may be financial by becoming a member, for others it may be helping of another sort. All we ask is that you help in whatever manner you are capable of so that we can keep up our Speed.
Canadians with ME, FM and MCS have lost a major supporter. Dr. Lynn Marshall was with Ontario's Environmental Health Clinic since its founding and was medical director for some years. She was involved in clinical care, training, policy and research around ME, FM and MCS. She displayed extraordinary kindness, wisdom, and leadership. Y
Laila is a therapist for people with chronic illness and relates how she could cover her walls with the suggestions she has gotten over the years with her illness. She has asked others who are chronically ill how they felt about this phenomenon of getting medical advice from others who say they are trying to help.
In this article, Laila relates how unhelpful it is for others to offer advice while they are unqualified to do so.
Tessa’s feeling of self-worth started to come into play when her future husband was having a conversation with a future in-law who asked how she would earn her bread. Tessa had to quit her job and move in with her boyfriend due to distance and commute limitations. This question became buried into her subconscious.
Tessa was experiencing frequent pain and fatigue but thought it was normal but as her health took a significant downturn and her pain became debilitating and fatigue became a daily struggle.
In this story, Tessa relates the constant pressure by society which views that your value is in your job. This particularly came into play when she started seeking medical care and was not believed and accused of faking it and remembered was her subconscious had buried.
When a Doctor Turned Down My Referral and Said I’m ‘Not Sick Enough’
By: Lydia Joy Landerville
Lydia relates how on the good days, her body only protests a little but on her bad days standing and walking generates constant pain in every muscle. This has been going on for a few years but in the past year, things have become so much worse she had to limit or stop activities altogether.
For the year 2020 she promised that that would be the year she would put herself first and that included tackling the mountain that was her health.
In Lydia’s story she relates how she was not prepared for the many set-backs thrown at her and being told a specialist wouldn’t take her case as he felt she ‘wasn’t sick enough.’
Stop Telling People With a Chronic Illness to ‘Try Yoga’
By: Amy Denton-Luke
Amy relates how when one comes down with a chronic illness, people you meet have a cure for it. It’s not from doctors nor anyone in medical research but from people who say they or someone they know had the same thing. However, they got cured because of trying……….
Amy’s story is taking a walk down memory-lane for many of us. Those who are new to chronic illness may not know what to be alert for and how to avoid needless suffering and guilt for not trying the many suggestions coming your way.
When you think about it, it’s rather insulting when people throw those suggestions at you as if you wouldn’t do everything in your power to get better!
We got a call recently from a member who wanted to hear about other people's experiences with the pandemic.
We though it would be an interesting topic for the next newsletter.
Could you email us your stories - on any aspect of the pandemic that you want to talk about.
We won't include you name, unless you specifically ask us to.
Please send your stories to [email protected]. We are planning to put the newsletter together in late March.
Thanks so much for your help!
NATIONAL ME/FM ACTIONN NETWORK
Margaret
Margaret Parlor, President.
Battling Internalized Ableism as Someone With Chronic Illness
By: Paige Andrews
When Paige first became ill and it was impossible to ignore her symptoms, she beat herself up for not having a normal life. This was compounded by the reactions and comments of others. Despite scientific evidence to the contrary, she found people seem to think chronic illness and disability are the result of some moral failure.
Paige describes the comments of healthy people when there she can only work part-time so she tried to mirror healthy people at the expense of herself. She beat herself up for her short-comings and compared herself to others with no health problems. Paige uses a rollator or walker to get around and quotes a Disabled Diva Blog that helped her cope with her aid:
“Everybody uses mobility aids.
That’s right, even healthy people need them and not just when they are recuperating from an injury or illness.
Unless someone lives within walking distance of their workplace, grocery store, etc.… they use a bus, car, or train to commute.”
To read Paige’s story and how her world opened up and coping better, please go to:
Surviving May Be a Daily Challenge, but It’s Also a Daily Victory
By: Kelly Douglas
Kelly relates that there are days when all you can do is concentrate on managing your illness. Those days are very difficult as there is no room to do anything else.
In this story, she reminds us that you did more than that.
Why We Need to Stop Ignoring the Trauma of Being Diagnosed With a Chronic Illness
By: Karandeep Kaur
The author relates that when someone comes down with a chronic illness, it gets overlooked what it does to the individual.
Karandeep has been ill since the age of 12 and was forced to spend most of her day in bed. She points out that this kind of trauma changes one’s life but feels that she was basically forced to deal with her difficulties on her own without the help of medical providers.
Karandeep shares what she has learned over the years to still give her a quality of life.
Chronically Illl People, Let’s Stop Accusing Others of Faking Their Illnesses
By: Charlie Bickel
Charlie goes through her years of illness and how difficult it is to even believe she’s ill due to the many times she is told it is all in her head. She questions herself wondering if she may be faking her illness.
As her health kept declining, she started to look into people who would not judge her and believe her by joining support groups. However, in that milieu, she found that some were judging others who are ill who they felt were faking it.
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