Ankylosing spondylitis

What do you mean you CAN’T work?

Well it’s that time of year again, if you’re working with an autoimmune disease. Last year my boss suggested I go on FMLA (Family and Medical Leave Act) because I was getting too many “occurrences” which meant that after 8, I would be fired. Filling out the paperwork wasn’t too difficult of a task for me; thankfully the doctor does most of the work.

After this past year on FMLA, I was grateful that it is available because if I called in to say I was going to be late, which was lot, or would miss a day of work, which was more than 8, I just printed out an excuse form and the doc would sign it and then I would keep it in a file. No more occurrences, no more worrying if I was going to be fired, because I was safe from that little policy of being fired for lack of “attendance”.

How can the FMLA help you if you have a chronic illness, and should you apply for it?

fmlaFMLA in a nutshell:

The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. Eligible employees are entitled to:

  • a serious health condition that makes the employee unable to perform the essential functions of his or her job;

 Fact Sheet #28: The Family and Medical Leave Act of 1993                                                                   Fact Sheet #77B: Protection for Individuals under the FMLA

If you have a hard time getting the form I have linked one here for you. Print it out and get it in, but make sure your company is doing it, as there are some who are just not following the law!

When working with chronic illness, it is easy to get on FMLA and it’s your protection from being fired. This is a very simple process that you will benefit from in the end, especially if you miss more work than is acceptable.

So what is it like working with an autoimmune disease?

If you have never had a chronic disease, only missed work because you had a cold, or one of those people who have never missed a day of work in their life, you cannot begin to understand what it is like for those of us who do. I missed work very rarely up until 2006 when my gut decided to take a vacation from doing its job.

At first missing so much work bothered me, since I was providing a service, and when I wasn’t at work, that service was not done. I would get depressed when I was too sick to go in. Then there was the fact that I never could have a decent vacation because I had used up all my leave being sick. As the years progressed, depression got worse but I just got to the point where I felt that my health WAS more important than worrying about my job.

Don’t get me wrong, I love my job, and am so grateful to have such an environment like this to work in. But…going to work in pain is not an option anymore for me. However, there are those who are not as fortunate as me, and these individuals I feel for.

Many employers do not recognize chronic diseases because those of us who have them never tell anyone. Yes you may have those employers who don’t give a damn what’s wrong with you as long as you show up to work and do you your job.

But what can you do if you do not have FMLA to rely on?

One of the first books I read and have listed on my blog is Women, Work, and Autoimmune Disorder: Keep Working, Girlfriend! Rosalind Joffe.  autoimmune-bookThis book was most influential in my decision to keep working and not to give in to my disease. Joffe has been living with multiple sclerosis (MS) and ulcerative colitis for several decades and is a chronic illness career coach. Joffe also has a website that is here dedicated to helping women stay on the working path.

Joffe believes that one should stay in the workforce even with chronic illness. Besides the existing laws that protect your right to work, you have a right as human being to provide for yourself and your family, to live with some dignity and belief that you are a contributing member of society. This is what keeps those of us from being depressed people! WORK, WORK, WORK….

Staying on the Job with a Chronic Illness

  • Talk to your supervisor- do not keep them in the dark about what is going on. I really thought that what they didn’t know won’t hurt them. Found out my boss just acts that way, she is very sensitive to her employee’s needs and she truly does care. Elisabeth Lanjuin, vice president of the Lupus Foundation of New England, urges workers with auto immune diseases to be cautious about disclosure. “People can’t see fatigue, but even after disclosure, some people might think it’s just an excuse for not working hard,” she says. “In a perfect world, you’d disclose and your employer would accommodate, but that’s not always the case. If you do disclose, be ready to provide your employer with educational resources.
  • Identify steps that will help you be productive- figure out how you can do your job. I know that if I come in later, after the pain has subsided, I can function more efficiently. My patients get seen, and I feel better that I didn’t let my team down making them do more work than they should have. Flares, or sudden, severe onsets of autoimmune disease-related symptoms, present a unique challenge. Make thoughtful use of your sick and vacation time. If you sense a flare coming on, take a day or two off to manage it early rather than waiting until you’re in a full-blown episode. Some people think reducing stress helps ease or prevent flares, though there is no scientific evidence of this.
  • Seek training for a new position- luckily my job is pretty easy, not physical, but mental. If you can train for a desk job go for it. If I had to get out of my current job, think I would go for an administrator’s job.
  • Ask about modifications- modifications to my job came with different hours but if you stand, ask for a stool to sit on, modifications in how your desk is set up etc. For example, if fatigue makes working an eight-hour day impossible, accommodations might include extra rest periods, reduced hours or the ability to work at home. Simple accommodations like a different keyboard or non-hand-held phone also can help. “How you approach your employer is key, says Joffe, particularly if you expect accommodations. “You have to think about what you want to say, how you want to say it and how you want others to respond,” she says. “Unfortunately, the onus is on you to present your employer not with a ‘problem’ but with a solution that is clearly in their best interest.”
  • Learn about your options for disability leave or insurance- learn about what benefits your employer or community provides. There are a lot of state-run assistance programs that might be able to help as well. Many workers with autoimmune diseases retire prematurely. But health-oriented job counseling from professional rehabilitation counselors can help them keep working.
  • Get financial planning advice- talk to your banker… financial advisor etc.; I don’t have one of these, I am my own planner. I actually save $100 a paycheck a long with my 401K for that time when I don’t have any money. Paying off your bills will go a long way as well once you have no more income. One thing I found with having a chronic illness is money doesn’t go very far, so you best SAVE, SAVE, SAVE
  • When to Take Disability Leave When the time comes to take disability, you’ll know. “You know because you can’t get to work or you’re really doing such a bad job that you no longer can do the job well in any way,” says Joffe, adding that some people take disability only to find that their workplace was contributing to their poor health. It can be an eye-opening, healing time that kick-starts your ability to plan for the future in a new way.

Staying in the workforce with a chronic illness requires thinking ahead and making some adjustments. If you have an autoimmune disorder, it’s a good idea to do some creative planning now, for your future.

Some statistics of interest…..

The AS (Ankylosing Spondylitis) Life Impact Survey was conducted on behalf of the SAA (Spondylitis Association of America). The goal was to find out more about people with ankylosing spondylitis and how the disease impacts their daily lives, Harris surveyed 1,996 adults by mail and 194 online between July 3 and October 4, 2002. The survey respondents claimed they had ankylosing spondylitis and had some contact with the SAA. A second sample group of 194 patients with ankylosing spondylitis were physician-referred.

  • reported unemployment rates are three times higher among people with ankylosing spondylitis than in the general population
  • about a third of people with ankylosing spondylitis may be unable to work altogether, with a further 15% reporting some changes to their working lives (2)
  • 25% have been forced to change their job/career because of ankylosing spondylitis.
  • 44% avoid certain jobs/careers due to ankylosing spondylitis, while 17% under age 65 said they are “not working”.

This study of course is out of date because I would imagine the percentage of individuals with AS who are unemployed is much greater now. More people have been identified in the last 10 years making the prevalence of AS higher than MS.

So what’s next “I can’t work anymore”

Are Disability Benefits Available for Ankylosing Spondylitis?

The Social Security Administration (SSA) does recognize Ankylosing Spondylitis (AS) as a potentially disabling illness, under its inflammatory arthritis listing. To be automatically approved for benefits, you must have one of the following symptoms of AS, as shown by medical imaging.

  • Fixation of the dorsolumbar or cervical spine at 45° or more of flexion from the vertical position.
  • Fixation of the dorsolumbar or cervical spine at 30° or more of flexion from the vertical position, plus moderate involvement of two or more organs/body systems.

If your AS is not severe enough to fulfill one of the above requirements, you might still be able to get disability benefits if it limits your functioning so much that there are many work activities you cannot do.

I do not know much about the SSA process but the usual wait time is 2 years from initial application here in the US. But… if your IMAGING shows the fixations listed above your approval will most likely be streamlined, meaning less wait time. If you feel that you will qualify for SSA, please go find a lawyer who can assist you in filling out the paperwork as it is a very long and laborious project.

6 replies »

  1. Great information.. For those of us in the medical field, I have gone to a PRN status, secondary to loss of days due to my frequent Brain issues, and dealing with severe headaches as well as dealing with depression.. Thank YOU for caring enough to educate others.. Love you Joyce 🙂 xox

  2. Nice blog, Joyce. I wish I could have kept working, but my job was so crazy nuts that only a very fit and healthy person could have done it. With all the surgery I’ve had and the subsequent illnesses that followed ulcerative colitis, I’d have had real trouble getting by in a desk job. It’s really tough if you’re self-employed; you need to work harder than most people to get any work, and then have to work through the pain when you do get some, because there’s nobody else to cover for you. I wouldn’t wish my situation on anyone. If you’re already in a job, you might be able to hang on to it. If you don’t have one and your illness is unpredictable and debilitating, it’s a nightmare. Nobody’s going to employ a sick person over a healthy one, and I don’t blame them.
    In the UK, the benefits system pays out a fortune to people who’ve never contributed in taxes, who CAN work but don’t want to, while the sick and disabled are being targeted to ‘get back to work’! It’s terrible. I hope everyone out there with debilitating conditions gets a fair deal from their employer. The only thing is, you also have to look at it from your employer’s point of view – if you can’t do your job, it’s not fair to expect them to keep you on. It’s such a difficult situation from both the employee and the employer point of view.

    • Juliette, what you have gone through is worse than I can ever imagine. I don’t think that anyone truly thinks they will not be able to work until they experience illness as you have. Luckily for us in the US we have some federal protection, but I agree with you in that the difficulties employers face when employing someone with a chronic illness can be burdensome. I don’t think I could put my boss/employer through that because I would know the people my absence is affecting and they need those services I provide. So far I have been able to manage my job but I haven’t experienced what you have and don’t really know what I would do in that situation. Hopefully I won’t have to.

  3. I know this is an older blog, but I”m having the issue right now where my corporate job is following FMLA to a “T” which is nice, but my work colleagues are annoyed with me. This morning, one even said she refuses to help with any work I don’t do anymore and she understands I’m on FMLA, but that doesn’t give me an excuse. I get it, I have a job to do, but I also have to miss 1-2 days a week due to pain and fatigue and sometimes if something doesn’t get done, it will either have to wait or someone else will have to do it. I’m debating whether to quit my job, which has benefits and the FMLA part, for a part-time job. I get that I can’t feel guilty but at the same time, it isn’t a good work environment with the 3-4 days I DO come in, I get bitched at the whole time. I’m sounding whiny, but I just don’t know what to do right now. I have Undifferentiated Multiple Tissue Disease, by the way, Lupus and Raynauds with symptoms getting worse and worse (fatigue/pain daily now, sores in mouth, bruise VERY easily, hair falling out) so I don’t know how things are going to go in the next few months. Any advice is helpful 😦

    • Emmy, I’m so sorry to hear how your co-workers are treating you. But to be honest, your job and coworkers aren’t your real problem. Unfortunately your health is the real problem and it won’t get any easier for you staying in a job where you are physically and emotionally drained.Doing the FMLA helps, and would continue to aid you in staying in a job but when co-workers are offended by your illness because they lack empathy, then in the end the job isn’t worth the stress. It is hard because you are put between a rock and boulder so to speak. Here you have a job with benefits that help you to manage your illness, the job is decent and so forth, but the environment is not conducive to effective healing, meaning you just build up more stress when you do go to work because of how everyone treats you. My question is, how do you feel on the days you don’t work? When I worked during FMLA I always felt better when I wasn’t working. That is when I realized it was my job that was killing me, literally. I quit my job, gave up the benefits and worked part time. Best decision of my life. Plus I made a lot of life style changes that had I stayed at my former job I would not have done. Your health is more important and you have to prioritize meaning do what is best for you, and obviously this job is not doing anything for your health. Let me know what you do.

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