Category Archives: access to care

access to care, disability, pain management, stereotypes

“If you can ____, you can work.”

When I told my family and friends that I was filing for disability (with an attorney’s help), they all said “Finally!”

I had resisted this process for a couple years, figuring I’d be declined. Yet everyone who knows me, knows what I live with every day, and how much work, family time, etc., I’ve lost as a result of my illnesses.

What I’ve learned from this so far is that what ordinary people consider disabling and chronically ill, is *much* different from the SSA definition. Also, it’s another agency that seems to feel that the best way to gain someone’s cooperation is through the use of threats, interrogation, and manipulation — with a smile. None of which I respond well to — due to my background, I tend to go selective-mute when someone uses these tactics on me.

The irony is that the SSA apparently is aware of the long-term trauma in my history, and yet still uses these tactics.

“Can you drive? (Locally) Was your cane medically prescribed? (No) Can you leave your house? (Yes, but I usually don’t — too many reasons why.) Can you go shopping in a store? (Nope) Do you even know what your medications are for? (Yep) Why haven’t you gone to more specialists? (Takes months to get in, takes arrangements for my kids, takes energy to get there, be evaluated, and more energy to get back. And I’m flattened the next couple of days.)

And, the best — I have to be too sick and disabled to leave my home or do *anything* for myself, yet I have to see specialists regularly and on SSA’s timeline.

Because if I can do any self-care, any cleaning, or drive — I can work. What b/s logic!

It’s not about avoiding work or being lazy. It’s about my physical and cognitive capacity to handle sustained work. My best venue is online work, but there is much I don’t and can’t qualify for, and there is a lot of online work that pays maybe $3 to $5 an hour, and/or requires 20 to 40+ hours per week, advanced scheduling, and restricted sick call-outs (if any). That is unsustainable for me, and will do little for prescriptions, medical bills, and special dietary needs.

Sadly, if a *specialist* refuses to take a stand and prescribe certain assists (diet, tools, remedies), none of what keeps me semi-functional will be accepted. Too many doctors weasel-word, don’t want to deal with the SSA, and/or resort to “You have so much to offer — just try!” The assumptions in this still boil my blood.

I have to see this through, because I already committed to it. However, it seems like a no-win situation for me, and one that will only make my illnesses worse by pushing myself too hard, and sheer exhaustion.

Curious if others have had a positive or smooth experience with the SSA? Reminds me of stories coming out of the UK in the last year or so. If you don’t mind sharing your stories (anonymously, please don’t name people), drop a note in the comments, thank you.

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access to care, pain management

Chronic pain is chronically avoided.

I had planned a different note, but as my symptoms have worsened over the past few weeks — I need to rant and address the issue of chronic pain (moderate to severe). Please forgive my tone — the pain has been worse for a while and I’m feeling rather down about my declining health in general.

I’m tired of living with pain. I’m fed up with it, disgusted by it, and wondering why pain management is restricted to certain populations, while others are told to just “lose weight and exercise more.” It’s immoral and, in my opinion, unethical.

I experienced a merry-go-round when seeking pain relief this summer. I have a prescription for Tramadol, which the doctor gave me with the caveat that I would only take it if the pain is severe. So living with moderate pain is acceptable? That’s criminal. I broke all the tablets in half and I usually ration them — what if they won’t renew the prescription if I run out?

I’m also a registered medical cannabis patient, have been for a few years. That helps somewhat, but it’s expensive, heavily restricted, and comes with its own problems. And if I go out of state, I have to leave it behind. This leaves me with Tramadol, which is also restricted and no guarantee they would prescribe it again. What remains?

Someone suggested pain management clinics. I researched them, and learned there are lots of non-drug modalities for easing pain. Great, sign me up! The catch is that I have to be an active cancer patient or referred by a hospital’s own specialist to be assessed (waiting lists). Seriously?!?

Not dissing cancer patients at all — my family has been full of them. My argument is why do I/we have to be cancer patients to be treated for chronic pain? This is a quality of life issue that no one should have to live with.

I tell each doctor — I need help with pain management, and I’m following all of your rules. Then I get shuffled off to doctor after doctor, they all give the same advice. OR they tell me that I have these illnesses, and “you know, chronic pain is part of your illness.” They say this with a “just shut up and accept it” look. Sometimes they tell me that I’m “too young” to be living with this. Well, my body didn’t read your case studies or textbooks, so what can I say? The pain is real, I’m real — treat the patient, not your statistics.

I would say that they don’t know — but they DO know. Better pain management options exist. Why don’t we have access to them?

I would love to know if CI warriors have tried to get help with chronic pain. Have you succeeded? Or did you have similar challenges and brush-offs? Drop me a CI note about this topic. I look forward to learning of your experiences.

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