Issues for Advocates
ISSUE ONE: Are advocates doing enough?
The impression I get is most advocates are working to their limit, its just the limit is too small. The only way to improve advocacy with current advocate numbers is to work smarter - and that means having a plan.
As we get sicker, our life contracts, but we try to hold on to as much as we can. As a result we are often doing more than we can sustain, doing more is impossible without crashing, and even doing what we are leads to crashes. Once we are able to pace our activity or otherwise adapt to our illness, we still try to do as much as we can. There is not very much energy left for anything, and if we expend it on advocacy we are taking away from an already reduced life.
Illness Severity
Our local ME/CFS society dissolved because there was nobody well enough to keep it going. This is not an uncommon occurance either, I have heard of a number of other examples of this.
For the only mildly ill (using ICC ME criteria) we still have some kind of a life we can cling to. If we are working then we work, we rest, then we work again. There is not much left for advocacy. To a lesser extent this also applies to students.
The moderately ill may be working part-time, or may have been forced to stop. There is limited capacity to do much, and until they learn to pace themselves it is impossible to get the energy to do advocacy - otherwise its right into a push-crash cycle.
I am moderate on the ICC ME scale. I know that if I want to do more, then I have to do less somewhere else. As a result everything I do is a trade-off with doing something else.
Severe patients are struggling to survive. They have very little energy for anything else, and may have very limited time even on a computer while lying in bed. I know when my illness was more in the severe stage (for a year or two in the 90s) I could not even think about advocacy. Survival and healing were my only concerns.
Very severe patients probably can't use a computer. They cannot be expected to be in advocacy.
Finances
Advocacy costs money, just owning and running a computer costs money. So many of us are below the poverty line, struggling for basic survival. Do we have an internet account or do we spend the money on more medical tests, or another treatment? These are real issues for many of us.
The same argument holds for travelling for protests or testimonies or whatever.
Cognitive Issues
Advocacy is mentally difficult. Given we typically have multiple cognitive issues, including poor working memory and difficulty concentrating, the kind of mental focus needed for even online advocacy is difficult. It can require sufficient mental and emotional activity that it can induce a crash, even if minimal physical activity is involved. So mental activity has to be paced along with physical.
Cognitive inertia is also something I suffer with. I have trouble shifting tasks. If I have been doing one kind of thing for a while then I can cope, but if I have to do something else it is harder to switch back. This is one reason why I cannot do a little bit of something, then something else. Things need to be managed in blocks of activity. When I was working toward a PhD I found the point at which I began to realize I would have to quit my candidacy was when it was taking longer to get my brain into gear than my current mental endurance would sustain on a given day. By the time my brain started thinking it was time to quit.
I deal with these issue by four methods - two are resting and alternating activities. It is uncommon for me to be writing something as long as this post for very long, instead I will break it up into a number of sessions.
The third method is that I try to do most those things which I find easiest. This is a constraint on the types of activities I undertake. While I want to work at a wider variety of advocacy, only in some things do I have a capacity for sustained effort.
The fourth is by blocking activity. I will do one thing for a while, sometimes many days, then switch to another task. Sometimes I can get derailed by this - I have quite a few things I need or want to continue that are sitting in my todo list.
Limited Physical Capacity
Many of us cannot physically travel without it taking a large toll, often inducing a crash. If we have that issue then we might be able to travel for protests or whatever, but there will be costs - both financial and health payback.
Limited Sustained Energy and Attention
Related to pacing is the issue that often we try to do too much. So though we can start strong we have problems sustaining it. So advocacy suffers from a waxing and waning effect. The smaller the number of advocates doing some project, the larger the impact this will have on their advocacy.
Competing Pursuits
What dominates us for many years is the need to get better. We go looking for an answer, any answer. Our time, resources and energy are pursuing health, one way or another.
In my own case I stepped up my advocacy at the point when I had downgraded my efforts at healing. I had run out of money, but I could still try to promote research. While I had been involved in promoting research for a long time, my efforts at political advocacy are comparatively recent.
Lack of Focus and Coordination
What we lack however is focus on critical issues (we are mostly doing our own thing) and coordinating our activity with other advocates. Advocacy groups probably have a little more coordination, but there is not enough of that to make a difference. In addition advocacy groups tend to get caught up in their own agenda, they may have some success on some things, but they cannot do everything.
One of the reasons why I want to promote discussion on advocacy is to try to highlight what activities are most needed. If we can get a better sense of strategy, then we will have a better idea on what tactics to employ to achieve our goals. If we don't know what to aim for we risk wasting our limited effort.
Summation on Advocacy
My impression is that advocates are generally doing a lot, sometimes too much as it comes at a health cost. There are simply not enough advocates. We also lack a coherent strategy.
ISSUE TWO: The numbers game: why are there not enough advocates? Coming soon.