Disability – Shame, Stigma and the Ultimate Price of Pain

I have a long complicated medical history and now, for the first time in my 20+ year career, face filing long-term medical disability. I've not been to the office in nine weeks. Technically, I could qualify for benefits in 25 days. With each passing day, I feel the hard earned success of my career spiraling down the drain.

My situation is this: I have had this disease/condition for over 20 years. I've had eight surgeries - the most recent being at Stanford two years ago. That surgery was done by the best physician/surgeon in the world and was considered the surgery of last resort. When the pain started back up, I consulted with my doctors: They were all in agreement I am no longer a candidate for surgery and at this point would benefit from a long-term pain management program.

Meeting with the doctors at the pain clinic I was given three options for pain management – all opiate medications. Because it came in a patch form, I chose fentanyl and started taking the generic prescription last fall. The side effects were considerable and I was unable to drive. Once we established the generic product didn’t work, the insurance company allowed me to be treated with the “brand name” drug: Duragesic.

Duragesic, however, was not without its problems, and in February of this year, the drug was recalled and there is now nothing available at local pharmacies. Due to the recall and problems with manufacturing process, my choice was to go back to the generic fentanyl patch or change to another medication. We tried an alternate medication.

When the change in medications first started, I needed to take time off from work to treat the withdraw symptoms I was experiencing from no longer wearing the Duragesic patch. The first drug my doctors chose to replace the Duragesic with was methadone.

Throughout this process, my employer and I have had frank and honest discussions. When the methadone treatment started, my employer shared with me was that when I was on the generic fentanyl and unable to drive, they were questioning my ability to work. They knew it was important for me to work, but they could see the changes in my performance caused by the medication.

Like most people, my employer is familiar with methadone’s prescribed use for only one thing: heroin withdraw. They aren’t familiar with its use as an acceptable alternative for pain treatment. With the start of the methadone, they asked I not return to work until I'm 100% with a note from my doctor that I’m able and capable to return to work.

I knew within a week methadone was not going to be an alternative pain medication and the morphine therapy started. I am not at a therapeutic dose for the morphine (I'm experiencing way too much pain) but I'm suffering tons of side affects that make it impossible for me to perform my job.

The ability to drive is a good benchmark for how I am doing. Last week, when we were increasing the frequency for when I could take the morphine, the pain doc and I spoke of my employer’s desire for me not to return to work until I’m back at 100%. The doc shared with me then that I may never be 100% like the way I was before.

It could be he’s said this before, and I’d just been in denial, but I really heard and understood the doctor for the first time during that visit. I saw all the years of education and hard work magically vaporize and disperse out of the room.

I have lost so much to the morphine these past few weeks, not just my ability to drive. I can no longer do easy or complex math (I'm a designer at an architectural firm; math is an essential function of my job).

This weekend I tried creating an Excel spreadsheet – a simple task which would normally take me 30 minutes to 1 hour took me almost 4 hours. Writing a post for this blog takes up to six hours. This loss in cognitive function is significant, for me, my employer and my clients. I'm expected to make real-time decisions that affect the lives, health, welfare and safety of many people and can't do so with any confidence because morphine clouds my thinking.

This is all very scary and sad to admit. I ask myself constantly if, by making this admission, I am doing lasting harm to my career and reputation? If other medications or pain treatment alternatives can be used successfully without the side effects of the opiates and I've made this admission and gone on disability, will my current employer ever take me back? Will a future firm take the risk and hire me?

My feeling is I've paid into the system... the future when I paid my premiums was uncertain - I may or may not have needed the benefits. Unfortunately I do need the benefits. Without them, I would be homeless. The private disability insurance pays 60% of my gross salary and is not subject to tax. It is good for 24 months. Later, I could apply for Social Security Disability... but the monthly payment will be far less.

I really want to work – however the effects of morphine at its current dose is significant – I fail self-administered field sobriety tests, doze at my computer constantly, suffer from dizziness and double vision. (In the plus column, I appear to have adjusted to the nausea.) All that said, and the morphing isn’t really touching the pain, which today, on a scale of 1 to 10 (1 being light, 10 being the worst imaginable) has be consistently between a 6 and 7.

I have two older sisters who are now on social security medical disability. One sister has Lupus, the other MS. Both suffer from fatigue, and then each has her own sets of symptoms for her condition. They find no stigma or shame in applying or accepting their SSDI payments. They’ve worked over their careers, would continue to be working if they could. The only difference between my sisters and me is they are both married and their husbands are the primary financial bread winner in their households. Being single, the responsibility is all on my shoulders.