Whitney Dafoe Updates

Agree, we all have our own experiences.

I was active in ME support groups for years, and met many people irl with ME, but I have never heard stories of this type of abusive behaviour, dismissive yes, but not this sort of ugliness and shame put on them.

 

I haven't either, Mij, but then again I don't live in the UK where this seems to be more prevalent, especially in the healthcare system. I've been through a lot these past two years with health issues, with many hospital visits for tests, procedures, surgery, etc. and ME has never been an issue. I was treated with respect and at no time was I ever bullied or abused.

 

I should imagine it's very common.

When it's happened to me, it's usually the other person who has brought it up or started asking questions. I certainly haven't gone looking for an argument about it or been making an issue of it.

 

Ditto.

My employer and some colleagues, despite always being able to call on me in an emergency and despite my appraisals always commenting on my work ethic etc suddenly started treating me as though I was workshy.

Family members and friends who were always used to being able to rely on me when they needed help were often the worst.

The whole hassle that started just ahead of my mother's funeral was because a sibling started an argument involving someone else. They all felt I should make a 175 mile round trip to collect & deliver another relative to the hospital & then hang about all day to deliver them home. Most of that journey would be on country roads where there were fairly regular road accident fatalities and despite me making it clear that I simply wouldn't be safe to drive that kind of distance.

They knew me. They knew I would always help out. They knew, when well, I would drive across the country through the night to help someone out & have done.

Once I had ME, for these people, the person I had been ceased to exist.

That's the nature of prejudice, especially when it's so extreme, there is no logic or reason to it. You become an acceptable target for unacceptable behaviour. Just an excuse to lash out enthusiastically at someone and still be able to feel good about yourself.

I faced prejudice before. A boyfriend whose family was a different faith, a girl studying a course that was male dominated, a female doing a job typically seen as male, as an immigrant. None of it quite as extreme as the attitude I got once I was diagnosed with ME.

 

Even if there is no stigma attached to the diagnosis, we could benefit by more people we know knowing somebody with the illness.

So for example, I think my friends from before I became ill, who know I have it, are more likely to donate to ME or CFS than if they didn't know I had it. Similarly the odd one has fund-raised or helped with fundraising.

This would happen with lots of conditions, stigmatised or otherwise.

 

Whether or not the analogy stands, perhaps we should talk about whether to ‘come out’?

I’m not ‘out’ in any official sense because there is no treatment, I am fortunate enough in my history to able to support myself (so far), and being officially health impaired would only throw up barriers to the (very limited) activities I do contribute to.
( If I told you what I do you’d probably agree on the basis of the name but I have been able to contribute ad hoc and, as a side effect, build and maintain a more inclusive branch of the organisation too.)

So Whitney’s post does make me pause to think.
I have told some people in my life about my illness but mostly not the name.

The name either leads to being ignored (dropped off their list of valid people) or else triggers a series of attempts to tell me what it is and what the cure is and that I just need to be open minded about it and try harder etc. I’ve been repeatedly told I’m selfish (for giving less to people who were used to more from me), had my community told I’m selfish and have been cruel (again, simply being unable to do as much and my explanation not accepted) with the result that people think I’m at least in an embarrassingly messy feud (really not me), and (often by the same people) that I cannot really be someone with ME/CFS because they’ve met someone with it and they have all these symptoms and bodily failures (mostly listing my own experience but evidently these other people were able and willing to be more convincing).

I’ve also had some wonderful people who’ve not needed any explanations to be glad of what I can do and supportive of my need to do less. Many of the latter figured it out (my diagnosis) without me needing to tell them a name. They often have someone in their life with cancer, or severely debilitating migraines, or “women’s issues” which were only ever eased years later by radical surgery, or autoimmune conditions that required complete changes of life. And these people knew me (as an actively involved member of society) before illness.

I have recently given the name to my siblings. They went silent. But to be fair they are living in some of the more pandemic challenged parts of the world just now so they probably don’t have the mental space to know what to say.

So, I would have to think hard about whether I had the fortitude to take on coming out entirely. The scrutiny, of every action, ...not at all sure I could do it.

I don’t want to spend another minute trying to prove how ill I am. Illness the last thing in my life I want to be true. Even though my entire life is pacing. Even though even this post will cost me (no emails for the rest of the week).
The idea that everything I do becomes a poster for PwME... terrifies me.

No, not at all sure I could do it.

 

I think lots of things can contribute to a lack of awareness and funding rather than only one thing.

If somebody is hiding the illness, they are unlikely to be actively fundraising which means less funding. Also their friends and relatives who don’t know they are ill won’t be fundraising or donating as much if at all.

Also a problem we have is lots of people are undiagnosed. In the UK, say, awareness levels are fairly high but in lots of countries in the world, awareness levels are a lot lower meaning fewer people are diagnosed which means fewer people and families are donating, fundraising, lobbying, etc.

In my own case, it took me 5.5 years to get diagnosed. After I was diagnosed, I subsequently learned someone I knew and went to school with had had it for around as long as I had been ill but kept it quiet. If I had known about the illness from them, maybe I would have been diagnosed quicker and never deteriorated to the severe level I have been at for a long time.

 

Interesting, I have actually heard a lot of them. Might be cultural differences

 

Ditto.

 

There’s always room for respectful differing opinions.

 

The repeated statement without giving any sign of noticing/acknowledge the information I and others had given, felt a bit quarrelsome at the time. But I am glad the thread developed in a different direction than I felt it was headed at the moment I wrote it

 

My abandonment from family members over the last 28 years was not from having ME (no one showed that much interest in learning about it-ever), but was from ignorance and being caught up in their own lives.

 

So is it the "label" of ME in particular that people are prejudice about in UK and other parts of europe? Or is it from having a chronic illness and being disabled?

Yes cultural differences and how each country labels ME. There were 2 ME doctors in my city in the early 90's when I became ill. There were also irl support groups (no internet back then) that distributed pamphlets to doctors offices to educate them about ME. This was how I learnt about ME, from calling a clinic and being directed to a support group. It was not stigmatized back then. The seriousness of ME seems to have been downplayed starting in early 2000, and not taken as seriously by the medical establishment as it once was. My GP of 35 years acknowledges that I'm ill but has become dismissive over the last 15 years.

 

I was genuinely trying to understand other people's experiences, and was not being dismissive if that was your interpretation.

 

I am 'out'. I post repeatedly and stubbornly on fb about ME, never cfs, draw attention to research, advocacy etc. I get relatively little recognition which hurts/ annoys me, but I still do it. It is so much part of me and what i can/ can't do that I wouldn't make sense if it wasn't known.

Over time, my close family have become more accepting. DH and kids always seemed to accept it. They see me losing more and more of what I love, and support and help and have raised fair amounts of money for ME. Slightly further away family after initial difficulties have slowly grown to understand more, and maybe 2 friends.

Other 'friends' - many of them 'no'. I heard a 'friend' at a party talking to another behind me say -when I had just been diagnosed with a heart condition -that it was alright now because I was 'really ill'. I don't know who it was. I think I froze so I didn't turn round. I was less ill then so I was upright so could have looked but didn't. It was horrible. A real wound. Others choose just to ignore it which sometimes feels as if they are ignoring 'me'. I tell those about positive steps forward in advocacy. I won't be silenced but it often feels uncomfortable.

Thinking about it, now that I am a wheelchair user and mostly bedbound, I feel there is more recognition.

I think the analogy with LBGT is appropriate.

Edit: para 2 " and have raised fair amounts of money for ME" added

 

I think if I had a different label, such as MS, then there is no doubt that i wouldn't have had quite such a high level of discrimination.

Having said that, I have met people with MS, diagnosed a decade or so before me who were treated as badly as I ever was, possibly worse.

Some of the worst offenders in my life had conditions themselves. The difference being that, in their minds, theirs were real. Mine was just an attitude problem.

I believe there is a cultural issue. For non UK members I'll try to explain it carefully but mods please feel free to cut the next if I've wandered over the line.

In the eighties, there was considerable unrest. A great number of workers in some of the poorest areas of the UK lost their jobs with no hope of getting another. There were pickets, clashes with police and violence.

One of the measures often used in the UK to assess how the government du jour is doing are the unemployment stats. In the eighties a large number of those people who were made redundant were moved from unemployment benefit to ill health benefit. This then seeded the idea within the psyche of the British public that people on ill health benefits were scroungers. Ill health benefit tends to pay out a bit more than unemployment benefit.

When you add to that the glaring headlines that appeared about Yuppie Flu, it's not hard to see a very toxic situation can develop.

 

This is true.

Maybe if diagnosed today I would do it differently. However, with time and as I have become more ill, I have lost contact with many of the people I knew and rarely meet new people. Although I have some contact with some family members, they haven't been around enough to see just how bad it is.

The slur campaign that kept me silent also contributed to how isolated I've become.

 

One of the issues that some in the UK have to bear in mind is that if they are claiming ESA and post frequently on social media under their own name then that could be used against them by the Benefits Agency when they are reassessed.

This has a negative impact on awareness and fund raising.