Working can be taxing for even the best able bodied human but working with a chronic illness definitely compounds the challenges.
I truly know how important it is for anyone to have a job, keep it, and do it with ra. These suggestions are geared more towards the newly diagnosed but I am hoping even the veteran ra worker will find a usable tip or two below.
So, here goes…
1. Get a copy of your employee handbook (if you don't have one already) and familiarize yourself with your company policies that will impact you. You should become familiar with your sick leave policy, health coverage policy, vacation policy, late policy, etc. Knowing what road map to follow while working with ra is critical.
2. Familiarize yourself with the FMLA (Family Leave Act) You may need to use this at some point and knowing what you can and need to do will be a big relief at the time you may need it.
3. Know if you have disability insurance coverage available at your company and try to understand what is required should you ever need to apply. A lot of companies do not have disability insurance coverage. Also, each state is different. When I first applied for disability, I received it through the state and it was called short term disability. At that time, it was for up to one year. After a year, I applied to our federal program known as SSDI (social security disability insurance). My employer did not have long term disability insurance. They were a small company with less then 50 employees. Check your employee hand book. Often it will state whether your company has it or not. At this point, your mission is to educate yourself.
4. Understand your health insurance coverage. In particular, pay attention to the requirements for seeing a specialist (do you need a referral or don't you), what medications are covered by your policy (assuming you have drug coverage) as this will greatly impact what medications you may or may not be able to afford. As we all know, a lot of the newer medications can be very expensive and you will want to know if you have to pay the bulk of the cost or will your insurance cover it. Also a lot of policies require that your rheumatologist first try the standard ra medications like methotrexate before trying ones like Enbrel, Humira, Remicade, etc.
5. Does your company carry life insurance for you. I bring this up because once you have been officially diagnosed with ra, getting life insurance on your own will be more expensive. At least that has been my experience. My suggestion is to get life insurance if you can afford it and keep it. Preferably before you are "officially" diagnosed.
6. Look carefully at what you do every single day on the job. Can you combine steps to save movements. Can you make your job more ergonomic. If you use the phone a lot at your job, I recommend you get a headset. Leaning into the phone, cradled on your shoulder, can and will over time, cause more neck problems and shoulder problems. I have found a reputable website on the ergonomics of office setup that will give you some additional ideas. We are all different and every job is different. If you don't work in an office setting, check online to see if there are any helpful tools that might work better for you, etc. The easier you make doing any task, the longer your joints will last and chances are, the longer you can continue working.
7. The pain of it all. Talk with your rheumatologist early on about wanting to stay gainfully employed. Be blunt and ask what he/she will do to keep you working. What pain medications are they willing to prescribe to insure you are as pain free as possible. Often the DMRADS and anti-inflammatory medications don't deal with the pain. Discuss this all in advance! There is nothing worse then getting a terrible flare only to realize that your particular rheumatologist won't consider prescribing any pain medications at all. (Hint: I always tried to start any new medication on a Saturday). I worked Monday through Friday. And above all, be sure your doctor is available for emergencies 24/7. Ask how you should contact them, when can you expect them to get back to you, etc. There is nothing worse then terrible pain and having to wait for 12-48 hours is just plain unacceptable in my book. Trust me on this one…you don't want to find out when you are at a 10 pain level that your doctor doesn't call back on weekends or late at night. NOTE: Some jobs prohibit the use of ANY narcotic medications because of the type of employment. This should be in your handbook somewhere. If you have the type of job that prohibits the use of any narcotic medications, your doctor needs to know this also. A great rheumatologist should have an arsenal of tools to help you with your pain including non-narcotic techniques.
8. And last, consider how much do you want to divulge about your ra to your employer. There are stories from both sides on this subject. Some ra patients believe we should let the world know about ra and thus tell fellow co-workers that we have ra. Others feel they will lose their jobs if they are found out. Only you can judge your work environment and those that you work with on a daily basis.
9. Considering a career change....please be sure to check in advance all of the above before you accept a new job. And above all, be sure you will have new health insurance before your old expires. There is this gremlin in the ra room called pre-existing conditions that could put you without coverage for your ra for up to 18 months. Be sure you have health insurance at all times if at all possible. As of 2011 that pre-existing clause for adults has not yet kicked in under the Obama Health Care Plan. This means you most likely will be excluded from coverage for ra if you don't already have insurance.
10. How flexible will your employer be should you need to adjust hours, work part time, etc.? In most cases you will know the answer to this by just thinking about your current employer. Have then been flexible with other employees? Do they have compassion for employees with extenuating circumstances? Do your fellow coworkers pull together to help out another employer if they need help? If you have answered yes to these questions, then chances are your employer or boss will be sympathetic to you should you need some flexibility in your scheduling or possible a temporary transfer of workload. Again, at this point you are trying to built up an arsenal of tools should you ever need them to help you stay working.
10. How flexible will your employer be should you need to adjust hours, work part time, etc.? In most cases you will know the answer to this by just thinking about your current employer. Have then been flexible with other employees? Do they have compassion for employees with extenuating circumstances? Do your fellow coworkers pull together to help out another employer if they need help? If you have answered yes to these questions, then chances are your employer or boss will be sympathetic to you should you need some flexibility in your scheduling or possible a temporary transfer of workload. Again, at this point you are trying to built up an arsenal of tools should you ever need them to help you stay working.
I have no doubt that this isn't a 100% complete list of the do's and don'ts of working with ra. So if you have any suggestions, feel free to share. We are in this together and maybe together we can find the best way forward.
