People with chronic pain face an uphill battle in America. While laws exist to safeguard them from discrimination, the confusing miasma of the U.S. legal system leaves gaping loopholes where they remain vulnerable.
One of the first things many patients learn is that no one will take them by the hand and guide them through what they need to do to thrive despite their condition. They have to learn to speak up, even if they feel beaten down under the misjudgments of those who don’t understand. Here’s how to advocate for yourself when you have chronic pain.
In the Workplace
The workplace can be a battlefield for people with chronic pain. They often have to mask their conditions to survive — a self-gaslighting juggling act that can damage their psychological health.
While the Americans With Disabilities Act (ADA) does protect from discrimination, competing laws often leave this population vulnerable. For example, employers don’t need a business reason to fire an employee in states with right-to-work legislation — regardless of how badly that worker may need the job to keep a roof over their head or maintain health benefits. Companies unwilling to give reasonable accommodations might find it more profitable to their bottom line to replace such staff with others who don’t make waves.
What can members of this population do to safeguard themselves in what is often a hostile work environment? Please take these three steps — even if you feel secure in your organization.
1. Know Your Legal Rights
Did you know it’s illegal for employers with 15 or more employees to discriminate against those with a disability? Protected conditions include those that substantially limit your ability to do one or more life activities, such as walking, thinking, or communicating. For example, someone whose migraines or fibromyalgia causes brain fog, or even aphasia, could qualify under the definition.
2. Keep Accurate Records
However, the ADA alone isn’t enough to protect you. Depending on where you live, matters could end up in court. Keep careful records of all employment-related correspondence. Create a file on your computer — not your work one — and save all email chains and copies of other documents like annual evaluations. Documenting your experience may help you prevail in a lawsuit.
3. Build a Portfolio
Being a disabled worker means living with a sword over your head, always wondering when it’s going to drop. Depending on your condition, you might only be able to perform certain types of labor. For example, someone with degenerative arthritis or disc disease can’t stand for long hours to check out groceries and stock shelves. Nor can someone with a neurological condition that prevents driving take on a side hustle with Uber to see them through a rough patch.
Therefore, you have to embrace the mindset that you could be working on borrowed time and keep that resume polished. It’s also wise to develop a portfolio of your work. Sometimes, folks who struggle to thrive in traditional workplaces do well as freelancers and contractors, but you’ll need to show samples of what you can do to attract clients.
At the Doctor’s Office
Sadly, the one place you expect to be heard and understood can traumatize you the most if you have chronic pain — particularly if you’re female. Bias in the medical profession is very real. Some women have died when practitioners dismissed their legitimate physical pain as being “all in their head,” offering them psychiatric prescriptions instead of their needed treatment.
For example, women are seven times more likely than men to be misdiagnosed and discharged while having a heart attack. It can take up to eight years to get an endometriosis diagnosis, a painful condition that 1 in 10 women has.
Many chronic pain patients look forward to doctor’s visits with mingled hope and dread. They pray that their provider will take their symptoms seriously this time and offer needed interventions, but they fear having their concerns dismissed yet again. Here are three tips to make the process smoother.
1. Write It Down
Medical schools don’t teach bedside manners, and some doctors appear authoritarian and brusque. It’s understandable to feel intimidated and forget what you wanted to ask.
Write your concerns down before your visit. Make your list as long as necessary, including questions about potential treatment options you might have investigated.
2. Ask for Time
Some doctor’s offices make you feel like your time isn’t valuable, based on how long you spend in the waiting area — but it is. Many doctors schedule 15 minutes to see each patient, but it isn’t uncommon for them to leave the treatment room after two to three minutes.
At the start of your visit, let your provider know if you have multiple concerns. Politely ask them to remain until you’ve addressed all your questions — up to the full time allotted.
3. Bring a Friend
If you’re female, you might understandably bristle at this advice. However, having an advocate — particularly a male — with you when you go to the doctor can help them take your concerns more seriously. If nothing else, your partner or friend can testify to how severely your chronic pain interferes with your daily life, underscoring your crucial need for answers.
When Out and About in Public
Fortunately, many people don’t behave rudely toward those with disabilities out of spite. However, you also can’t expect strangers to understand why you need the motorized shopping cart at the store because standing for long periods can lead to dizziness and fainting. Here are two quick tips for navigating your way in public.
1. Practice an “Elevator Speech”
It can be surprisingly hard to sum up a condition that affects every aspect of your life in one or two sentences — but you sometimes have to do so to explain your needs to strangers. Practice a little elevator speech. Something like, “I must sit because a heart condition sometimes causes me to faint,” should be sufficient to explain your need for accommodations.
2. Come Prepared
Those who have seen the movie “Joker” remember the scene where he hands a card explaining his pseudobulbar affect to a woman on the bus. If you have an impairment that sometimes causes struggles in communication, using a similar prop might help you. It’s also handy if strangers asking you about your condition or accommodations stresses you, causing you to stumble over your speech.
Advocate for Yourself When You Have Chronic Pain
People with disabilities experience more challenges than most when navigating daily life. Their conditions often cause trouble at work, and some might struggle to get their health care providers to take their needs seriously. However, no one hands you a guardian angel to help you assert your need for accommodations. Follow the above tips to advocate for yourself when you have chronic pain.
