|Back to Living with Hepatitis C
Jacques Chambers, CLU, Benefits Consultant
“That’s easy. You go on disability when you can’t work.” Unfortunately, the answer’s not really that simple. Oh, it’s easy when something immediate and major happens. The old, “hit by a bus” routine, for example. If you break both legs and your job involves walking, the answer’s easy, it’s time to file for disability. If you’re a surgeon (or basketball star) and you break a finger, the answer’s also easy, you’re disabled.
But what if it’s not that simple? What if it’s the symptoms of hepatitis C, which come and go, or slowly become more troublesome? What if it’s the treatment that is disabling you? How do you recognize that day when it comes, when you can no longer work even though you could work the day before? This article will help you answer that question.
Remember the camel? Gradually loading it with more and more weight made it capable of carrying far more than it could have, had a heavy weight been dropped on it all at once. It is possible that you are doing the same thing when you try to keep working even though it becomes harder and harder. Sooner or later, you will add that final straw.
Also, what if your symptoms are primarily subjective, such as pain and fatigue, as it often is with HCV? What if your medication causes mood swings that make it difficult to deal with others, make working under pressure virtually impossible? When is it time to stop working?
Timing is important. When leaving work, timing is an important factor. You really shouldn’t leave when your symptoms are too minor to qualify for benefits. Conversely, you really don’t want to wait until you have no quality of life remaining. Also, the process of transitioning from work to disability involves more than a little paperwork and planning, so you don’t want to wait until you are unable to function at all to leave work.
“My doctor will tell me when it’s time to stop working.” Are you sure? In my years counseling people going out on disability I have encountered doctors who will support disability “whenever you want to stop work.” But I have also encountered many physicians who strongly resist ever putting a patient on disability, probably out of concern that it will hasten his or her decline.
And does your doctor always know when the time is right? Has your doctor seen the definition of disability in your LTD policy so he or she will recognize when the time is right for your policy to pay benefits? Does your doctor understand how Social Security determines disability? As good as doctors are at treating medical conditions, they’re rarely current on the details involved in the process of leaving work on disability. Yet, that is the person most people turn to.
Don’t get me wrong; your doctor is a vital part of this decision. If your doctor won’t support your decision that you are unable to work, then you will have trouble obtaining any disability benefits. Or, more accurately, you will not get any disability benefits at all without your doctor’s support.
“I’ll know when it’s time to leave.” That sounds very comforting, but it isn’t that simple either. When you are dealing with a life event as major as stopping work and becoming “disabled,” there is frequently an emotional backlash that makes it very difficult to think and reason objectively. It’s not easy to recognize the “right” decision when your ability to think rationally is impaired.
Despite that, you are still the best expert in determining the right time for you to leave work. You know how you feel; you know what your work involves and what it costs you physically and emotionally to continue working. If you can filter out the static and focus on the issues, then you’ll know when it’s time to leave.
“How Do I Focus On The Issues?” Organize your thoughts, put them on paper. Make a list of things you need to consider in making this decision (see below). Look over the list for a day or two and add other items as they occur to you.
Then review each item. Does it support continuing to work or support leaving on disability?
What should go on your list? That is for you to decide, but here are some of the items that would appear on most lists:
- Your doctor’s opinion AND your medical record – As I said, your doctor will be a key element in obtaining disability benefits, but so will your medical record. Remember, insurance companies and Social Security rarely look at you, the person. They judge your ability to work from your medical records. How complete are they? Do they list all symptoms every time? Are they legible? Have the appropriate lab tests and diagnostic studies been documented in the file?
- At your next appointment with your doctor, ask him or her about disability, and, after the appointment, ask to take your record to an empty office and review it page by page. Look for comments about your limitations from both work and daily activities. Are frequency and severity of symptoms included? Play detective; how disabled would you believe you are just from the record in front of you?
- How will you survive if you leave work disabled? – What benefits are available to you? How much income will you have from Social Security and from Long Term Disability insurance? Can you live on that and pay your bills, or what changes in your lifestyle will have to be made? How will you maintain your health insurance and how much will it cost? It’s time to dig out those benefits books from work and start looking for answers to those questions. It’s also a good time to visit Social Security’s website and get an estimate of what you would receive from them. (http://www.ssa.gov)
- What price are you paying to keep working? – Most people find work beneficial. It gives them a purpose, someplace to go, something to do, and even some social contacts in addition to providing income. When someone is slightly ill, work can actually be beneficial. It provides something to occupy the mind and time. It’s an incentive to get up and go.
- However, as an illness progresses and health declines, work takes more and more energy. There comes a time when work stops helping you stay healthy and starts accelerating the decline, and it’s not always easy to know when that point arrives.
- I’ve had clients that carry it to extremes. I remember one young man in particular who was convinced that as long as he didn’t lose weight, he would be OK and could continue to work. Without telling his wife or his doctor, he started adding rocks to his pockets when he went to the doctor so his weight would not drop. Regrettably, he so distorted his medical record that the disability insurance company did not agree to pay benefits until it was too late, although his widow did get all the back benefits that were due.
- That’s an extreme.
What’s more likely to occur is that working will start
requiring more and more of your shrinking energy supply and
more and more time to recover from work in order to go back
to work. You will find yourself starting to cut back on your
activities outside work so you can save your energy to keep
working. If you find yourself dragging home after work and
going to bed just so you’ll be able to get up and go back to
work the next day, then it’s past time to take a serious
look at leaving work on disability.
Add to these items of consideration other things that may be important to you personally. However, when making your list, please remember: Now is the time to be a little selfish. I’ve had some lively discussions on this with other consultants. I’m not saying don’t think of anyone but yourself, but it is time to put yourself first. This is your body, and possibly your life that we’re trying to take care of here.
Now is not the time to worry how they will get along at work without you. Regardless of the importance of the work you do, no one is indispensable. They will survive, and it’s time you focus on your own survival.
And yes, your family is important, but remember people naturally resist change, so their input may be somewhat distorted. A major change like a spouse or parent stopping work full-time “TO BECOME DISABLED” is a scary change that many would rather postpone as long as possible. Again, don’t worry about them. They will be fine. Your family loves you and deep down, they really want what’s best for you. (And if they don’t, why are you even thinking about them?)
It’s really up to you to determine and do what is best for you, and with the right information and by separating emotion from the decision process, you will make the correct decision.
A final word about subjective symptoms – Many of the most common symptoms of HCV infection as well as side effects of the treatment are subjective symptoms, primarily pain and fatigue, but also loss of mental acuity, nausea, diarrhea, and others as well. This can complicate the disability benefits process because they are difficult, if not impossible, to clearly document. Also, insurance companies and Social Security are constantly looking for “objective manifestations” of symptoms, which is difficult when the symptom can’t be measured in any lab test invented so far. Some insurance companies will discount subjective symptoms as if they don’t exist. A few have gone so far as to try to claim that “subjective symptoms can’t be considered in determining disability.”
One more reason that you’re the expert in knowing when it’s time to leave work is that you’re the only one who knows how badly the symptoms affect you. Everyone has different thresholds of pain and fatigue. What may be totally debilitating to your spouse may not seem so severe to you. You are the only one who can know when the symptoms reach the level that they interfere with your ability to function.
There is no prescribed level of symptoms in spite of which you are expected to work. In many ways, it’s your decision. It’s not important how severe the symptom may seem to someone else, it’s the impact of that symptom on you that determines whether or not you can still work.
However, communicating the impact of those symptoms on you and your ability to work will become an issue when you decide it is time to stop work and file for the benefits available to you. Planning ahead, knowing what you need to show, and making sure the documentation is in your records will help you decide just when is the right time for you to stop working and to start focusing on your health.
Confused about applying for disability? Click here
[Jacques Chambers, CLU, and his company, Chambers Benefits Consulting, have over 35 years of experience in health, life and disability insurance and Social Security disability benefits. For the past twelve years, he has been assisting people with their rights, problems, and other issues concerning benefits and disability. He can be reached at firstname.lastname@example.org or through his website at: http://www.helpwithbenefits.com.]
Copyright March 2003 – Hepatitis C Support Project - All Rights Reserved. Permission to reprint is granted and encouraged with credit to the Hepatitis C Support Project.
Back to Living with Hepatitis C