Fighting the Stigma of Invisible Illness

Stigma: “A mark or token of infamy, disgrace, or reproach” – the Free Dictionary. Synonyms: blot, brand, onus, slur, smirch, smudge, stain, taint. Sometimes I feel like a walking exemplar of stigma. I feel stigmatized for so much of who I am. My Mental Illness /Manic Depression, (“You’re just making it up”), my Chronic Intractable Pain (“You don’t Really hurt that much”), being Gay (“You’re sick and going to hell”), being on public assistance (“You’re just a leach on the economy”), my Migraines (“You must want to have them”), my Fibromyalgia (“You’re just faking it”), even my very Core Being filled with Invisible Illnesses (“You’re just a hypochondriac”).

All of these are hurtful to hear, but some of them are downright dangerous and cause me a lot of suffering and despair. They cause me to fear for my life at times in fact, like now when there’s such an outcry over mental illness in the media and calls for registering us and locking us up and putting us in hospitals or prisons or somehow denying us our civil rights. It’s a scary time to have these illnesses or conditions. But it’s been worse throughout history.

Mental illness has always frightened and even terrified people and understandably so. It Is scary. It’s scary to live with it. People have almost always reacted to those of us with mental illness with distrust at the very best and loathing, disgust and violence at the worst. They locked us up and put us in prisons and mad houses and experimented on us in hideous ways (look at Adolf and his minions and what they did to us). It’s been like that all thru history, but we supposedly live in more understanding times now, don’t we?

It’s a terrible and frightening way to live your life and if you don’t live it it’s hard to understand it. And understanding is the basis for combating stigma and we’re not getting it. We’re getting knee jerk reactions instead of calm logical discussions and solutions. We don’t need more lockdowns, we need more health care to find those who are on the edge and help them before they cause harm to themselves or others, tho most of us harm ourselves far more than we do others. What we’re really facing is Stigma. So where does stigma come from?

Fear is the basis of stigma, and ignorance is the basis of fear. When people don’t understand something they often become fearful in general. If people respond with a fearful attitude towards life that leads to all sorts of potentially unwarranted assumptions and reactions, not reasoned responses. Fear and ignorance are the enemies, so how do we respond to them? We respond with education and logic and examples of why it’s OK to not be afraid.

We respond by letting people see us as who we are and letting them get to know us so they can see we don’t pose the threat they fear. We show them the truth and not the distortions of the sensationalized media presentations they see and hear all over. In short, we come out about who we are, however that may work for you in your life.

I’m a strong believer in coming out about who we are, whether it’s mental illness or being gay or whatever your issue is. I believe that if people get to See who I am, with all my Invisible Illnesses, then they can see that I’m a decent person and that my condition isn’t one that need cause them distress. I’ve found this to be true on countless occasions and I do it every opportunity I have when I can afford to make that commitment of time and energy. And it does take a commitment and energy to do it. It’s not a decision to take lightly.

I know there are situations where you just can’t do this and it would be literally life threatening to do so. I’m not generally talking about those times tho perhaps those are the most important ones. Look at the Civil Rights Movement. People put their lives on the line then to make the point that they deserved dignity and we may have to do the same on this occasion. We may have to become Visible.

It scares me frankly but I’ve done it and it’s been totally worthwhile and I’ve changed people’s attitudes with my actions. When passions run high it’s a hard time to appeal to the rational side of a person and they may not listen to you even tho you’re making good sense and they may know better in cooler times. But when you can do it I think you need to try to overcome your invisibility.

But there are true bigots and racists and people who are so prejudiced towards you and who you are that no amount of friendly talking is going to ever change their minds. These are the ones that it may be wisest to avoid at times when they hold power over you, but ultimately they’re the ones who need to be changed the most. But it’s not gonna happen and I’m at a loss as to how to deal with them sometimes.

Some people are just haters and that’s the way of life I’m afraid. They think they know better and they’ll tell you to your face why you’re evil and sick and deserve to be stigmatized without a qualm. It may or may not be appropriate to love your enemies but it’s definitely wise to at least recognize them.

I don’t mean to say that people can’t change. I’ve seen them do it. But some issues are so deeply entrenched in people’s psyches that it may be impossible to root out the cause of those prejudices and feelings. These are the people who need help in my opinion. But sometimes you have to fight fire with fire.

So help for them may come in the form of stopping them from behaving in hateful ways, and that may mean blocking them with laws for hate crimes or taking away their rights until they learn to play well with others. I’m sorta hard line about this and think that these people are the true criminals and should be the ones who are locked up, not those of us who are sick and ill, or who are gay or different in other ways.

We need better education but we also need laws to protect us and our civil rights, not laws that block us from being who we are and take away those rights thru forced commitment when it’s not necessary, tho I believe there are times when it is necessary. Sometimes you have to lock someone up for their own protection or for society’s and I have no problems with it as long as their rights are protected with due process, which is very tricky. Which is why we need good laws and intelligent discussions of them made in reasoned situations and not in the heat of passion.

So what I’m saying is that stigma is a real force in the world and causes untold misery and harm to people like me and my fellow Invisible Illness sufferers and friends. I’m saying that in order to fight it we need better education and health care, and laws to protect us and society from people who hate and people who kill regardless of their motives or reasons. It’s all connected and there are no simple answers to any of this. I’m not pretending there are.

But I believe any intelligent society, which I believe this is, is capable of identifying workable solutions to these kinds of problems. In fact it’s a mark of a reasonable society that we Do find solutions to these kinds of problems. But I don’t believe we can leave it in the hands of the politicians alone and I think each of us has to take a stand and do what we can in our own lives and working together to create a decent society. It’s hard work and it can be dangerous but it’s required of good citizens. I hope I’m one of them and I hope you are too.

Fighting Stigma Together,

Steve