In Part One of this two part Series, I explained why our healthcare system is treating chronic pain patients like pariahs. In this post, I talk about the need to raise awareness of our invisible disability (chronic pain) as a first step toward getting our needs met.
Life as a person with chronic pain is paradoxically easier (as opposed to having a more clearly visible disability) because we can code switch, and exponentially more difficult, because we can neither anticipate nor receive compassion without having to constantly explain our disabilities and needs to the sheltered ignorati.
Because it’s an invisible disability, you can pass as able-bodied when you just don’t want to deal with the judgement and disdain; but this is precisely the reason invisible disabilities can be worse than clearly visible ones.
First, disbelief is common. People will say “you don’t look like you’re in pain” (and you don’t look ignorant, I want to say) or “I saw you walking just fine yesterday,” or “it must be nice not to have to work.” (When people say that to you, as a chronic pain sufferer, I want you to remember that it’s not your fault the jobs of the abled-bodied suck because they are underpaid and demoralized by their employers).
But, as with any other disability, the shame of internalized ableism may cause us to feel like we are useless dead weight when our pain is too much to allow us to work an eight-hour-a-day job, or when it keeps us from attending to our children, or keeps us from participating in a social life, or attending to our own needs. We may even begin to question whether our pain is real, having been exposed to institutionalized gaslighting at medical facilities of every kind.
So we hide, because it’s easier to avoid the stigma that way. If we don’t talk about our need for or use of opioids, no one can accuse us of being drug addicted, or faking our pain, or malingering, or drug-seeking, or being lazy or incapable. But staying small and quiet is a soul-sucking exercise in self-loathing, because it means you will not be seen or understood.
Coming Out Supports Compassionate Healthcare for Everyone
So, I want us to come out and be proud of our differences. Most of us know we can be more comfortable, functional, and independent when we can get our disabilities accommodated with opioid medication. Anyone who’s been cut off, force tapered, or dismissed by a doctor knows there is no replacement for opioid medication. We know we are not somehow less than or immoral because we use opioid medication for pain. We know our bodies, and we know when we need it. We do not need a doctor to tell us whether we need it. Just because we know the name of the medication we used to be prescribed and know how to pronounce it doesn’t mean we are drug-seeking addicts. It’s okay to need opioid medication for pain. It works beautifully.
This is the message that we need to affirm to each other, and the message that needs to be repeated to the people in our lives who care about us and want to understand, and which needs to be repeated, ad nauseum, to our misdirected medical practitioners, government representatives and law enforcement, until they finally get a clue and snap out of the massive delusion of opioid prohibition.
We’re not going to get our rightful accommodation as invisibly disabled people — opioid medication — if we don’t come out of the shadows and demand to be acknowledged and accommodated.
Step 1: Come Out to Each Other
We need to come out to each other so we can support one another. People who aren’t chronically ill or who don’t have chronic pain will never fully understand our situation. Family, friends, co-workers; they don’t fully get the concept of “chronic” as in forever until you die, as in there is no cure, only treatments to help you live with it. They try to help you with suggestions for treatments, like acupuncture, chiropractic, massage, etc, that you’ve already tried and either it didn’t work, or you can’t afford it because it isn’t covered by insurance, plus, it’s not super convenient to just drop what your doing at work, or go out at 3 am because of painsomnia to have an impromptu sesh with the friendly neighborhood acupuncturist. Well people will never fully understand Pariah life. Coming out to other chronic pain sufferers is the only way to find true empathy.
Step 2: Come Out to Friends and Family
We need to come out to friends and family, because, even if they can’t fully understand, we need their support, and we need to articulate to them how, when, where, and why we need their support.
Step 3: Come Out in Public
We need to be seen and heard by the public so that we can disabuse them of their fears and stereotypes. We need to normalize who and what we are. We must instill in ourselves and our community a sense of our worth that can only come from consciousness raising campaigns led by chronic pain sufferers. Drug hysteria has gotten so bad, even people coming to the emergency room with acute trauma and people suffering end-of-life pain are being denied opioid medication because doctors are too afraid to prescribe. These people need our help as much as we do. Everyone is going to get sick and need pain medication at some point in their lives, and it is worthwhile fighting for access to compassionate healthcare for everyone.
Coming out is a tried-and-true strategy used by the LGBTQT and undocumented immigrant communities to raise political consciousness, counter heterosexism and homophobia, and xenophobia, and to reduce isolation and increase visibility and pride. Yes, people. I think we Chronic Pain Pariahs deserve a pride parade and a debutante party, every one of us. This strategy is successful because it forces people realize that marginalized groups are not a threat, because they are already living in our midst and have been for years.
Use Caution
We’re not going to get our rightful accommodation as invisibly disabled people — opioid medication — if we don’t come out of the shadows and demand to be acknowledged and accommodated. However, coming out isn’t without risk. Even if coming out unburdens you of a hidden identity, it may also expose you to more vilification and discrimination. No one should come out before they’re ready, particularly if it means risking your critical support systems, like housing, a job, or healthcare. Hopefully you can at least come out to a select group of trusted few in the chronic pain community. I recommend the State Facebook group pages of The Doctor Patient Forum to start. I’m in the Michigan group, but there’s one for every state.
How, when, and to whom you come out needs to be explored in more detail. Perhaps in a future post!
If you’re reading this, I hope you’ll comment. Do you agree with me that it’s a good idea to come out? Why or why not? What do you have to lose or gain by coming out? Please share with Chronic Pain Pariahs everywhere! If you like what you read here, please Donate, share a link, and Subscribe for email notifications of new posts!
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