A Story of Ehs, and Accepting Loss

zaterdag, 01 oktober 2016 - Categorie: Verhalen

Bron: beingelectrosensitive.blogspot.nl/2016/08/a-story-of-ehs-and-accepting-loss.html
14 aug. 2014

Stephanie Dickerson
Georgia, USA

How long have you been electrosensitive (and how long did it take you to make the link to EMFs?)

My symptoms started in 2005, and I realised that I was electrosensitive in 2012.

Your story:

Since I discovered I am EHS, in 2012, I have had to accept loss; loss of my career, loss of my income, family, friends and so much more.

It seems every time I feel like I get used to my “new” restricted life, I must face yet another loss. As more places implement wifi, my world shrinks even more, until there is literally no where I can go comfortably.

It is impossible for non-ehs people to even comprehend the huge burden and the isolation that this condition creates, and the grief one experiences daily for all that has been taken away.

Around 2005 I started having debilitating insomnia and feelings of agitation; I could not relax. I tried everything to keep healthy, and considered many different reasons for my lack of sleep, headaches, anxiety, and general un-wellness.

It never occurred to me that the home wifi, the cordless phone and our 2 cell phones had anything to do with my condition.

For seven years this suffering and complaining went on, and continued to get worst.

Finally, summer 2012, I had the summer off from teaching school and assumed I would improve, but instead, I became very ill.

It didn’t make any sense. I had nothing to do but rest, and rest didn’t help at all! It made NO sense.

How can you rest and not get better?

One day my husband happened to unplug the wifi, and I suddenly felt relief. I couldn’t believe it. My husband saw me relax. He saw me feel better immediately. Both of us were in shock!

We left the wifi off and I started improving each day.

Then school started, I was back to teaching, my happiest time, feeling so good! But then the school installed “high density wifi” in every classroom and I became desperately ill with heart pounding so hard I thought I would drop dead any minute, plus inability to think, weak, terrible digestion, strange chaotic vibrating inside, and also emotional issues as well.

Without any accommodations for my wifi sensitivity by the school, I was forced to leave my job, losing all that goes with having a job one enjoys: fulfillment, daily activity, a life with purpose, friendships at work, not to mention the income and much needed retirement benefits, all lost.

As wireless has increased since 2012, I have lost family relations, friendships, my doctor, and my dentist of 18 years, leisurely shopping, movies, concerts, gatherings, traveling, planes, hotels, even camping now has wifi.

What you'd like your friends and family to know about your life now, and what you'd like them to do:

What helps most is being able to talk about ehs and all that goes with it, just like anyone would like to share their life experiences.

EHS is my life now, day in and day out and talking about it is important to me.

What you'd like health professionals to do, based on your experience:

We need health professionals to recognize the seriousness of the wireless radiation/health connection and accept it as real. We need accommodations, which means having non-wireless areas for us to get needed medical attention without debilitating exposure.

What you'd like politicians, and those in authority, to do:

Politicians need to first recognize ehs as a functional disability, and make accommodations for us. More is needed, but that would be a start.

Comments from Professor Olle Johansson

Dear Ms Dickerson,

I am very impressed by your story, thank you ever so much for sharing it with us.

I have tried to study the electrohypersensitivity since the end of the 1970ies, and nowadays - as you may already know - in Sweden it has been recognized as a functional impairment (disability) since the year 2000.

(If you send me your e-mail address I can furnish you with a few papers that I hope will support your call.)

The Swedish approach to electrohypersensitivity is to view it as a functional impairment, thus focusing on the environment as the culprit (which is the general definition, including the UN one, of functional impairments).

This provides persons with this impairment a maximal legal protection, it gives them the right to get accessibility measures for free, as well as governmental subsidies and municipality economic support, and to provide them with special Ombudsmen (at the municipality, the EU, and the UN level, respectively), the right and economic means to form disability organizations and allow these to be part of national and international counterparts, all with the simple and single aim to allow persons with the functional impairment electrohypersensitivity to live an equal life in a society based on equality.

They are not seen as patients, the do not have an overriding medical diagnosis, but the ‘patient’ is only the environment - inferior and potentially toxic. This does not mean that a subjective symptom of a functionally impaired can not be treated by a physician, as well as get sick-leave from their workplace as well as economic compensation, and already in the year 2000 such symptoms were identified in the Internal Code of Diagnoses, version 10 (ICD-10; R68.8/now W90), and have been since.

But the underlying cause still remains only the environment.

Thus, in Sweden, electrohypersensitivity (EHS) is an officially fully recognized functional impairment (i.e., it is not regarded as a disease; N.B. this is not special for Sweden, the terms ''functional impairment'' and ''disease'' are defined according to various international documents).

Survey studies show that somewhere between 230,000– 290,000 Swedish men and women – out of a population of 9,000,000 - report a variety of symptoms, including typical cutaneous ones such as stinging, burning and itching sensations primarily in the face, upper chest and back, hands and arms, when being in contact with electromagnetic field (EMF) sources.

The symptoms of EHS are classified as an occupationally-related symptom-based diagnosis (code ICD-10; R68.8/now W90) by the Nordic Council of Ministers since 2000.

Swedish electrohypersensitive people have their own handicap organization, The Swedish Association for the Electrohypersensitive, which has its own websites in both Swedish and English.

This organization is included in the Swedish Disability Federation (Handikappförbundens SamarbetsOrgan; HSO; as a consequence of this, The Swedish Association for the Electrohypersensitive receives an annual governmental subsidy).

HSO is the united voice of the Swedish disability associations towards the government, the parliament, and national authorities, and is a cooperative body that today consists of 43 national disability organisations (with The Swedish Association for the Electrohypersensitive being 1 of these 43 organisations) comprised of about 500,000 individual members.

It has its own website in Swedish, parts of which are also in English.

Some doctors and dentists have described at an early stage the electrohypersensitive persons as “old crones in the throes of the menopause”, “the poorly educated”, “hypochondriacs”, “radiation ladies”, or victims of union-driven fears, mass media-based psychoses, imagination phenomena, Pavlovian conditioning, techno-stress alterations, etc.

These prejudiced care-providers used these terms despite often never having met an electrohypersensitive person or carrying out research in the field.

Unfortunately, some medical doctors and a few scientists still instead want EHS to be a medical/psychiatric diagnosis, i.e. with patients with an undefined disease syndrome, the latter instead being the focus of medical/psychiatric treatments (thus, no automatic accessibility measures, including shielding of the environment).

Make sure to connect to all the UN disability texts, realize that it’s the whole environment that must be accessibility-adapted, and do not forget that such accessibility measures actually are 100% positive for everyone to share!

People with functional impairments should have full access to the entire society, not just a small part of it.

The human rights for all of us, regardless of functional impairment, is that we should live an equal life in a society based on equality. It’s that simple.

(I have never heard anyone voluntarily wanting to give up their human rights, so be sure not to have any country forcing it’s citizens to it; it would be extremely shameful.)

When it comes to functional impairments, it is always only action that speaks, nothing else. To ensure that everyone acts within the UN Human Rights Convention is of paramount importance, and that persons with EHS is promptly given complete accessibility is the only acceptable goal, as is proper symptom identification and treatment when possible, and when asked for by the disabled person Himself/Herself. However, the latter should never be used instead of the first.

Finally, to water the existing legislation down would make matters far worse for all the persons with EHS and/or multiple chemical sensitivity (MCS), as well as for their relatives.

Therefore one must question attempts to move EHS from the functional impairment paradigm to the patient/disease one.

It took me, and others, decades to get the EHS persons the protection of The UN 22 Standard Rules on the Equalization of Opportunities for People with Disabilities/The UN Convention on Human Rights for Persons with Functional Impairments.

It will take less than a minute to destroy this. Mark my words.

The world is watching what we do, and we have the opportunity to do the right thing.

Biomedical research is of immense importance to form a potential base for further symptom relief as well as for understanding the mechanisms behind, but let it not stand in the way of the human right of persons with EHS, MCS, and other functional impairments, to live an equal life in a society based upon equality.

The world may be moving inexorably toward one of those tragic moments that will lead historians to ask: Why did they not act in time?

With my very best regards
Yours sincerely
Olle Johansson

(Olle Johansson, associate professor
The Experimental Dermatology Unit
Department of Neuroscience
Karolinska Institute
171 77 Stockholm

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