Having failed to get an appointment with my ME/CFS friendly doctor I managed to get on her “ring me back” list yesterday to request a new sick note for work and a repeat amitriptyline prescription before she goes on annual leave.
Except she had a crazy day and forgot to ring me – so her super chirpy lovely colleague phoned me instead.
“Can I help instead?” she asked me and with a dread in my tummy I swallowed hard, knowing she could give me the functional things I need but perhaps not the understanding. I explained what I needed.
“Would you like me to write on the sick note that you are gradually getting better?” she said.
“NO! No I don’t”
“Oh. So you don’t want me to put anything like that on the note? It’s just some employers like to know you are getting better, getting gradually better.”
“But I’m not getting better. I’m not better at all. I mean my pain is better because of the medication but nothing has changed. The fatigue …. The exhaustion … It’s still the same.”
After a little chat she remembered me – remembered seeing me back in June 2006 just before I got married.
“Oh god – you’ve had this for a long time haven’t you?”
Huh – like – yer. Hello? I have ME/CFS. I am like, er, chronically ill. I’ve accepted it – why haven’t you?
It ruffled me a little. It reminded me of the “patient role” – you either get better or you die.
Doctors often struggle with chronically ill patients that don’t respond to treatment, don’t get better and don’t get worse. In fact time and time again we read that the majority of CFS patients get better typically within the first year, or else within four years. Yet there seems to be increasing evidence that sufferers achieve remission, not cure – and are often reluctant to continue or re-establish discussions with so many of our doctors who struggle in the first place with us not getting better and offer little to support the chronic sufferer.
“The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the “miracle” of modern medicine, and somehow the lack of recovery is often perceived as the patient’s fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, “Stop complaining. You simply must adjust.” Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word “adjust” too often means “resign,” “settle for less than a desirable existence,” and “surrender.” At its worst, “adjust” is just another way of saying “You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope.” All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.”
People’s understanding of illness is based mostly on acute conditions. We understand a cold or a broken leg. People are either sick or healthy. The sick and healthy roles are well understood. Sick people complain, look ill, and remain inactive while they recover, which is usually within a few days or weeks. This is true for acute illnesses or pain. We also have an idea of what an invalid is. This is a person who needs to lie in bed being cared for long term. But what about the role of someone with a chronic condition that is not totally disabling? Someone who can go for walks, for example, and do some errands, but has limited capacity. This role is not so well defined in our culture.
Interestingly, there are some traditional cultures, where the person with a chronic condition (especially if they are mid life or older and female) is not expected to do anything or really function. They are put into the ‘invalid’ category and have trouble being allowed to do things that would be more functional.
Based on the well-sick-invalid framework, you are allowed to be sick or limited for a while. After some months, people will be expecting you to be back to ‘normal’ – that is, a healthy, fully productive state. If you are not, but you look ok on the outside, there may be misunderstandings, rejection. Some people judge you as lazy, exaggerating, or accuse you of faking to get insurance benefits or attention. Or they expect too much of you, overestimating your current ability. Dealing with people’s misunderstanding and judgment, suspicions, and assumptions is painful. Having to justify your lack of productivity is an extra stress on top of having the actual condition.
“I am really tired. Tired in the physical sense and so tired of defending the fact that I am still sick. There are so many things that make having CFIDS so awful…the pain, the fatigue, and, yes, the attitude. The attitude of doctors, the media, and even fellow patients has made the struggle even worse.
I got sick in 1987 and have never been able to return to work since. And unfortunately, I am worse. I have read so often how CFIDS patients are supposed to get better improve over time. I don’t mean to disappoint physicians and researchers, but I don’t think as many people fully recover as the uplifting newspaper articles and distorted statistics indicate.
I am not writing this to depress people. I feel guilty, as if I am not trying hard enough to get well. Every time I read about someone who just got better, I thing, “Why didn’t that happen to me?” Then I wait a year or so and call the so-called recovered person. And guess what? Their recovery was short-lived.
I think that somewhere in all the hope, the patients’ suffering has been forgotten. It must not be forgotten that many people are truly disabled and that many lives have been destroyed. Until the public image of the disease changes, then why should Congress allocate additional funding, and why should Social Security grant disability benefits for an illness the public believes will just go away by itself? “