People with multiple sclerosis (MS) who continue with their jobs tend to do better overall than those who don’t. That may include having a higher quality of life, experiencing professional and personal growth, having access to health insurance, and even managing their disease better.
But one study, which looked at the work environment, found that inflexible work conditions, commuting difficulties, architectural barriers (such as stairs), and difficulty using equipment at work (or having to stand for long periods while using the equipment) were some of the main barriers to ongoing employment.
This suggests that for many people, accommodations in the workplace could go a long way toward helping them stay at work and reap the benefits of employment. Studies show that arrangements that provide work flexibility and give workers more control are linked to continued employment.
Under the Americans With Disabilities Act, employers are required to provide reasonable accommodations to allow workers to do their jobs. But it’s your responsibility, as the employee, to guide your employer in what your individual needs are.
If you need accommodations, you’ll have to disclose that you have a medical condition. You don’t necessarily have to say that you have MS if you don’t want to. You may be able to say you have a neurological condition.
However, “Full disclosure can have a lot of benefits,” says Stephanie George, senior manager of MS Navigator Services Delivery at the National MS Society. “It can open the line of communication, provide education to your employer, and allow you to speak more openly about how your symptoms are changing,” she says.
You’ll likely have to educate your employer about MS, and you’ll need to describe the individual symptoms that you have, whether physical or cognitive, for which you require accommodations. That way, you and your employer together can decide what types of accommodations will allow you to do your job better, while keeping you as physically and mentally healthy as possible.
Below are some of the things you’ll need to communicate to your employer and some of the more common types of accommodations, although there are hundreds of different types of accommodations you can ask for.
1. MS Affects Everyone Differently
The human resources representative or manager you speak to may know a little about MS, but it’s important to help them understand that MS can affect each person differently, depending on where the inflammation and damage have occurred in your central nervous system. They may be aware of some of the visible symptoms, but MS also comes with a lot of invisible symptoms, such as fatigue, numbness, tingling, and vision and cognitive challenges.
You may need to describe how it affects you uniquely. You only need to disclose symptoms that require accommodations, says George. For example, if heat intolerance is an issue for you, but it doesn’t occur in your air-conditioned office, you don’t need to mention it.
2. MS Symptoms Can Change From One Day to the Next
It’s important to explain that your needs may change over time. MS flares are unpredictable, and it’s important that your employer understands that.
“If your employer knows you have this condition that can result in an unpredictable situation, it can help both of you prepare for it,” says Sarah Danen, LICSW, director of MS navigator services delivery at the National MS Society. “The key is communication: You don’t want to leave them hanging; they need to know where you are and what you plan to do,” she says.
Part of your job accommodations may be to make a plan for how to redistribute your work if you have a sudden flare of MS symptoms that makes you unable to work for one or more days.
3. Physical Accommodations May Be Needed in the Workplace
Many people with MS develop physical symptoms, but there are many ways to accommodate them. For example, conditions such as hot rooms or open office plans can worsen symptoms if you’re heat sensitive or if distractions make it difficult to concentrate.
Think about your current workplace and what would make it easier for you. If you’ve had a previous job, you likely know which accommodations have been helpful in the past (or what would have helped). If you’re working with a physical or occupational therapist, they can make suggestions for you too. And there are a lot of resources available, such as the Job Accommodation Network and the National Multiple Sclerosis Society.
Some common accommodations people with MS ask for include:
- Parking spots close to the office
- Restroom supports, such as grab bars
- A specific location for your desk or workspace, such as closer to a restroom
- A chair to sit on if you have a standing job
- A cooling vest or place to cool off if you’re not in a cool workspace
- Assistive technology for vision issues, such as magnifying readers or readers that provide audio for your screen text
- Noise-canceling headphones
- Voice-to-text technology, if you have dexterity issues
The more precise you can be about any special equipment or software you may need, the easier it will be for your employer to meet those needs. And those devices may be paid for by the employer, says Danen.
4. Working From Home May Increase Your Productivity
For some employers, the COVID-19 pandemic made working from home much more normal, but if your employer is encouraging a return to the office, you may need to spell out why working from home is easier for you — and can make you a more productive employee.
“People who don’t have MS underestimate the physical toll of getting up, getting dressed, and getting into work,” says Danen. Avoiding these energy sappers can leave you with more energy to accomplish your work tasks. Here are some other benefits of working from home:
- Easier to manage fatigue and work breaks
- Flexibility to take several short breaks or a longer break to reenergize yourself
- Better control over temperature, noise, and other environmental triggers, which can help with focus and reduce stress
- Easier to schedule appointments and not have to take sick days
- Ability to set up a work area that works better for you
5. Schedule Adjustments Can Sometimes Help
MS doesn’t necessarily mean that you’ll need a different work schedule than your coworkers, but if it does, you’ll need to explain why that’s the case. You may be able to get accommodations, such as scheduling more complicated tasks or meetings in the morning when you have more energy. Or you may need to ask for flexibility, such as taking a two-hour break at midday but working later in the evening.
Some people with MS may not be able to handle the workload and may need to ask for a lighter schedule. One review of the literature found that the most commonly required accommodation was related to workload management.
Depending on your workplace, you may be able to negotiate a shorter workday or a four-day workweek.
6. You May Need Time Off for Medical Care
Most workplaces have a policy for taking time off for medical appointments. If you need more time than usual, you will need to discuss this with your human resources manager. Check your employment contract, which should spell out how many sick days you get and the process for requesting time off.
“If you’re in the midst of a flare, you may need to ask for a flexible work schedule during that time, so that you can go to the doctor and get the treatments you need,” says Danen.
If you need extended time off, you will need to discuss whether you will be paid during that period. The Family and Medical Leave Act (FMLA) is a federal law that protects your job and employer-provided health coverage for up to 12 weeks per year, but it does not require your employer to pay you during that time. It also doesn’t protect you if you work for a small company with less than 50 employees. You can check the FMLA website for more details.
The Takeaway
- Because MS affects each person differently, the accommodations you may need at work will be unique to you.
- When discussing your needs with your employer, be specific about how MS affects your ability to do the job — and what changes or tools would help.
- Resources like the Job Accommodation Network and the National Multiple Sclerosis Society can help you identify solutions and understand your rights as an employee.
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