Dear Spoonies: We Need to Stop Gaslighting Each Other


A few months ago I saw an online article about Lady Gaga talking about her fibromyalgia challenges. In the photo (from Instagram) she was wrapped in a space blanket and sitting in a sauna, and below it mentioned having a flare-up. About a third of the comments below it were calling her a fake, an attention-seeker, pulling a publicity stunt, etc. As anyone living with an invisible illnesses knows, this sort of response is nothing unique. Except this was in a fibromyalgia forum.

We’ve all had those low, angry moments and had “Healthy Person Envy” and “Recovery Envy.” Celebrities are also targets for jealousy because they have resources most of us don’t. With enough money for specialists and treatments and the ability to outsource cleaning, childcare, cooking of specific diets, etc., at least some patients would be able to return to part-time work or study.

Social media is an amazing support and information network for people with illnesses, but it comes with an aggressive, trolling side. An online post is only a selective snapshot of that point in time. Everyone’s approach to revealing their health challenges differs, both online and in person. For some its every detail, good or bad, some forward educational articles, some celebrate the small victories like going out to a friends’ birthday dinner, some barely mention it.

To be fair, some recent incidents have made people jumpy – a couple of online friends have had photos stolen and used for fake profiles. A lot of research went into making these accounts believable, even fooling other patients who befriended them. This is sometimes referred to as Munchausen’s Syndrome. But it is rare.

In the majority of cases it is just patients attacking each other when they should know better. Because just about every single person living with an invisible illness has had the experience of being accused of attention-seeking, hypochondria, malingering or exaggeration by friends or family.

It’s also important to acknowledge that everyone’s experience of a given illness is unique. Sometimes people who have had milder cases are judgmental of the more severely affected. While it’s fantastic there are patients who got early recognition, diagnosis and responded well to treatment, they are currently a minority. Lecturing people whose conditions are more severe, or those caught in the illness-poverty cycle, that they simply aren’t trying hard enough, etc. creates a lot of ill will.

 

Some people’s systems are so reactive that even a new vitamin supplement can utterly crash them. A realistic best-case scenario for many of us is a partial improvement, providing we are very strict with diet, supplementation and environment. It doesn’t mean we are cured, or were never that ill. Returning to a normal, average lifestyle is generally not an option.

I’ve noticed a lot of people will post an occasional “this is the real face of _____” photo of themselves lying in bed or in the hospital. Who can blame them? Choosing not to focus on your illness and taking a positive approach can get you accused of being a fake. It recently happened to me after I posted some health links online. Of course this person never heard about it when I was totally debilitated: Instagram didn’t yet exist and at the time I was far too ill to care about the outside world. Too often those who are most affected by invisible illness are themselves invisible.

Being mindful of being triggered and not engaging in this sort of attack on each other is important for two reasons:

1. We all lose credibility. It plays into the hands of those that cast us as attention-seekers and hypochondriacs.

2. We need to focus our energy on facing the challenges ahead. It’s not just a case of getting more recognition of these conditions. Far more people are getting ill, at younger ages.

Although there is generally more awareness of these conditions, it is still a minority of doctors, researchers and patient-based advocacy groups, all having their credibility questioned by the medical and media mainstream. Research is catching up: Lyme (and co-infections), mold toxins, toxic chemicals and genetics are becoming increasingly proven to be part of the story. But it’s still taking a long time for this to filter down to patients.

It is still a widely acceptable medical practice to dismiss physically ill patients as “stressed,” “depressed” or “hypochondriacs.”

It still takes quite a while, and usually several doctors, before most people get a useful diagnosis and treatment.

Some doctors will give a diagnosis, but still believe them to be psychosomatic illnesses.

Failed by the medical mainstream, patients have to research their own symptoms and treatment options, only to be labeled professional diagnosis collectors and drug-seekers.

We are still commonly scapegoated by politicians and cast as welfare bludgers and malingerers.

We have to take each other seriously if we are to expect similar respect from the rest of the world. We need to be a unified front to be able to improve the situation. There is a synergy to a group – we can achieve a lot more than as individuals.

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Thinkstock photo via Wavebreakmedia Ltd.


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