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Stigma is a social process characterized by exclusion, rejection or blame. When you have a chronic illness the attitudes of others can have a profound impact on a person’s self-worth. Because many chronic illnesses are “invisible” and often misunderstood, people often make assumptions that are hurtful.
Stigma impacts people with many illnesses like cancer, hepatitis, HIV, mental illness or are obese. Our society scorns weakness, unreliability and the inability to get better. Society seems to have a fixation on blame and stereotyping.
I learned about stigma shortly after being diagnosed with hepatitis C. When some people would find out I had it, they would cringe and back away. Even if they knew it’s a blood-born virus and they can’t get it from being near me or touching something I touch -some assume I must have done drugs and it is my own fault I was infected.
Stigma is based on ignorance (the lack of knowledge). Stigma projects the fear and anxiety felt by the general population onto the person with the illness. People with chronic illness can be made to feel unaccepted at home, at work, in personal life, in social life and in health care.
Fibromyalgia Is Not Believed
People with conditions like fibromyalgia and chronic fatigue syndrome bear an extra burden. We are not believed. Family, friends and even medical professionals don’t believe we are as sick as we say. We often hear: Everybody has aches and pains. You are depressed. You just need to pull yourself together, stop being lazy and push through it.
Lately, there has been a firestorm on social media because of people setting up “fibromyalgia is fake” pages. One is by someone who says “I have a serious illness myself, one that nobody disputes the validity or seriousness of. The stigma on fibromyalgia is well-earned. People with fibromyalgia WHINE like nobody else. Just to get the diagnosis you have to do a lot of whining after the doctor repeats that there is nothing really wrong with you.”
We are called a culture of f***ed up Fibro Warriors, who think they have the corner market on pain and suffering as a whole. This person has a blog and social media pages. And they have been posting comments on fibro blogs and facebook, causing quite a stir. People complained and Facebook made him or her take the page down.
He or she claims it was because of bullying from a group of crazy stalkers. Well, someone is certainly showing stalking behavior and is looking for a lot of ATTENTION. For someone who has a REAL illness, he/she put an awful lot of time and effort into posting this nonsense. So please, if you see these kinds of posts -don’t give this person the attention they desperately want- IGNORE and DELETE.
Although research has been unable to identify a single, specific cause of fibromyalgia, findings have proven that fibromyalgia is REAL.
The American Osteopathic Association surveyed more than 400 adults with fibromyalgia. They found that many of the respondents delayed seeing a healthcare provider because of the stigma associated with fibromyalgia.
People react to social stigma in two ways. Some people internalize the stigmatized message. They suffer from lowered self-esteem and feelings of worthlessness. Others are more confident and become empowered in reaction to them.
Self-stigma comprises three steps:
- Awareness of the stereotype
- Agreement with it
- Applying it to one’s self
Stigma from outsiders does not harm people nearly as much as those who diminish their own lives out of self-stigma.
Coping With Stigma
Millions of people struggle with chronic illness. In addition to the pain and loss of energy, they are also forced to endure added stigma. If you associate yourself with people who are compassionate about your condition, it makes all the difference.
In order to cope with stigma:
- Connect with peers – People with chronic illness are better able to cope with the stigma attached to their condition if they have the support from a group of peers who are experiencing similar problems.
- Be an activist – When people with chronic illness band together to argue for better understanding, services, and policies for all those who suffer from the same condition – they also argue for the associated stigma to be removed.
- Walk away – Choose to walk away from stressful relationships and situations when it is best for you and your health.
- Seek professional help – Having to deal with stigma, shame and other feelings from having a chronic illness may make it necessary to get professional help. The stigma associated with getting help from a mental health professional can be greater than the stigma surrounding your illness. It is one of the reasons people don’t get the help they need.
- Change doctors – If your doctor is impatient, obviously frustrated, or has suggested you’re making up your symptoms -find a new doctor.
When your chronic illness is misunderstood or simply not believed by the people in your life, it can be emotionally devastating. This is why it’s important to spend more time with those in your life who believe, support, and understand you and less with those who don’t.
Social stigma is based on ignorance and fear. Self-stigma occurs when you agree with and internalize social stereotypes. Both can lead to social isolation and depression.
Remind yourself, you are not your illness, no matter what anyone else may say, think or feel. You have no reason to be blamed or feel ashamed. Reducing stigma in your life can be a matter of reducing time spent around negative or toxic people. You are not alone and there are people who understand what you are going through.