Fighting the Stigma of Invisible Illness

Liberty

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

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14 comments on “Fighting the Stigma of Invisible Illness

  1. I will stand up for or with anyone to fight the stigma of Invisible Illnesses. We are discriminated against for too long. Some people do react the way they were raised. Sometimes to get that out of their systems takes a miracle in order for them to respond appropriately. To better educate the public is needed. And better medical treatments are desperately needed as well. This is a great blog. I have book marked it and will follow it. Keep up the great job!

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    • Thank you for your kind words. I couldn’t agree with you more that education and better medical treatment are the keys to the matter. Good for yo for speaking out as you do. We need to be upfront about who we are and talk to people about it and inform them about our illnesses and how they affect us. That way they can see us for who we are, without the hyperbole and condemnation. I’ve found that one on one interactions work great but sometimes it’s necessary to speak out, like on this forum, to a wider audience. That’s what I tried to do here. Thank you for checking out my blog. And keep standing up for your rights.
      All the best to you.
      Steve

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      • Thank you for your words of encouragement. I appreciate it. We do need a wider audience to specifically work on taking away the Stigma associated w/Migraine Disease-and to prove it’s not “just a headache” as so many people believe it to be.
        Thank you for checking out my Blog and wishing you the best.
        Julie

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        • You’re very welcome for my comments. Anyone who’s ever had a migraine knows they are more than “just a headache” as do those who love us and see our suffering. I wish you the best in recovery if that can happen for you. Keep up the struggle. Hopefully things will get better for you.
          Take good care,
          Steve

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          • I will be keeping you in thought, prayer and best wishes always in your journey. I will keep up w/your post as well. Again, I appreciate your support SO much. It’s a Blessing when you can connect w/people who have empathy and understand because they too walk that same unsteady path and constantly on the lookout for ways to make that travel easier.

            Blessings to you and take care.
            Julie

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            • Thank you for your comments as well Julie. It’s nice to have support isn’t it? I think we’re in a similar boat and I do understand what you’re dealing with in my own way. I have a lot of Invisible illnesses and it keeps me busy dealing with them all. We have to be strong to do it and clearly we both are. Good for you for doing what you can do to educate people. It all helps…
              best to you,
              Steve

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  2. I really love this post about depression, stigma and that fear of being labeled mentally ill. with everything that has happened of late and the government push for extended background checks actually reverses our rights under the HEPPA Law-to keep our medical records private unless “WE” choose to disclose it. I’m afraid because I’ve been diagnosed as being depressed now society will brand me as “unstable” “a threat to society” and “dangerous”. Stigma is all around is in different forms-gay, Migraine, depression, OCD, PTSD and on and on. I could write a few pages on who and what is stigmatized. But it boils down to societies unwillingness to be better educated and empathetic. Instead they react out of fear and ignorance. And those that think Migraines are just a headache of course sets me off-that is my hair trigger. If they were just a headache why are so many of us disabled? The visual disturbances, the verbal and mental incoherence that accompanies this disease, the loss of balance, the extreme nausea, the hyper-sensitivity to loud noises, smells and lights. A regular headache doesn’t do that to people. I’d be tickled pink if I just had a run of the mill headache. In fact I’d try to learn how to do backflips if I could just have a regular run of the mill headache.
    People refuse to be educated about this and all topics. And because ONE or TWO people act out of the norm and are the extreme then all must pay for it. What good would an extensive background check have done in the Sandy Hook shootings? Not a darn thing! The mother is the one that purchased the guns and she was not deemed “mental”. It was her son that took what didn’t belong to him that was in the house to carry out such a horrific act of violence. So if they do extensive background checks on everyone and ignore the HIPPA Law that you always have to sign when you go to the doctors office, will they then request EVERYONE in your household to be checked as well even if they are not the ones buying a firearm? And if they inact this extended background check will that then do away with the HIPPA Law?
    I really liked your post and it will bring up quite a debate over peoples rights vs peoples misconceptions. And to think that criminals will submit to background checks when they get their guns “ILLEGALLY” and on the black market and also from drug smugglers. Sure, they will check in their guns! NOT. I’m frustrated at this system and the whole public’s lack of sensibility. It’s going to be a witch hunt for sure.
    Keep up the great work your doing.
    Sending you prayers, hugs and blessings.
    Julie

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    • I realized a long time ago when I was diagnosed with Bipolar Disorder that I was now on a watch list of mentally ill people. I just take it in stride. I don’t like it but it’s the way it is and there are a Lot of people out there who are fighting for our rights. I used to be a member of NAMI and went to their support groups until they no longer helped me but they were good for some time. There’s solidarity in numbers and the more of us who speak up the better it will be. Hang in there and don’t let yourself get too upset about it all. I know it’s hard but we have to stay cool to stay healthy and not get too bent out of shape. I don’t mean to give up or quit fighting obviously, I just mean we have to pick our battles and choose wisely so we can be most effective. I find that one on one interactions are the best way for me to teach people about my illnesses, and I also have found that talking about the hard parts of this struggle helps me too. So many of these invisible illnesses are so hard to bear because no one believes we suffer as we do. Education is critical. It’s very real and I empathize with you totally. Stay strong and up beat about your life tho cause depression can kill you in many ways, including robbing you of a good life while you’re still living it. Keep up your good work yourself.

      All the best to you and much support,
      Steve

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      • That is terrible. I suppose now that I was diagnosed w/depression and PTSD I’m on a watch list as well. Oh whatever. Let them watch. I hope they get bored silly, frankly. I’m too pooped from the FM and CFS to really give a rats patootie what they think of me or anyone else. It took a long time but I have finally arrived to the thought that you take me as I am or go elsewhere because I’m not changing. Well, there are some things I like to change but ones that are uncontrollable I just have to work with it instead of against it. Nothing in this world is worth getting that riled off about. Just venting once in a while helps.

        Sending you blessings and support
        Julie

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        • I agree that we have to be ourselves regardless of what other people think or do. It’s critical to our well being to take control of our health and do whatever we need to. If that means getting a diagnosis that helps us understand our illnesses better then I think that’s a good thing myself. I know learning about the Bipolar Disorder has changed my life for the better in learning how to cope. I don’t care if people know and in fact I tell them when ever I can and it’s safe to do so. The more of us who speak out the better. And yes venting once in awhile does help a lot. ; )
          All the best,
          Steve

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            • Me too! Same goes for you. I had a bad migraine yesterday so didn’t feel like answering just then. It’s better today but I’m in that post headache state where you still feel out of it. Oh well, it’s all part of it, eh?
              Take care,
              Steve

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            • I am so very sorry you had suffered a Migraine. I know how you feel. Coming off a bad one today and have the Migraine Hangover Syndrome. I will pray for you to get better soon and NO more migraines.
              Take care.
              Blessings
              Julie

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