For persons dealing with HCV, the recent introduction of the new medications that appear to provide the complete annihilation of the virus truly is miraculous. Access to the medications is another story, however. Insurance companies want to protect their profits; Medicaid programs are scrambling to find a way to budget the enormous cost of providing these medications to those who need them.
Also, as marvelous as the medications are at killing the virus, they are unable to repair the damage to the body that the virus has already caused, up to and including cirrhosis. While dealing with the physical and medical issues is vital, there are emotional issues as well that need to be at least acknowledged and dealt with should you find yourself in the position that you are no longer able to work and stay healthy.
The emotional impact of such an event may seem like one of those issues that is too basic to spend much time thinking about. Of course, there’s an emotional impact on leaving work for disability. Who wouldn’t be depressed? However, there is usually more to it than that, and not being prepared for it can put you into a tailspin that can affect your mental well being as well as your physical health.
In my years of working with clients, I have found that making the transition from work to disability is a major life event, right up there with getting married or moving, and it can have broad repercussions on actions as well as feelings and emotions. It can also have a dramatic effect on your ability to make decisions objectively and rationally. Clients who recognize this impact and know to expect such feelings are better prepared to deal with them and minimize them when they occur.
What, emotionally, will happen to me?
Don’t worry, you won’t “totally lose it.” As with medical symptoms the emotional impact will vary from person to person. The emotional repercussions of leaving work on disability often take the form of depression, lack of concentration, inability to focus on a goal and achieve it, as well as general feelings of malaise, helplessness, and fear of the future. It can also interfere with your ability to think objectively and react rationally. There may be other symptoms both emotional and physical. The important thing to remember is that, uncomfortable as these symptoms are, they are a natural part of this change you are making, and they will pass. Everyone in a similar situation goes through a similar process.
Why does this happen?
Part of it is obvious. You are moving from active work to inactive disability; that’s a major life event and would upset anyone. There are other factors as well, primarily the sense of loss of control and having to battle old messages drilled into you by society since childhood. In many cases, a person self-identifies with the work they do.
There is frequently a feeling of loss of control over not only the direction of your life, but also a sense of losing control over your very own body. Likewise, the medical condition is now dictating your future. You may feel like you no longer have the power to decide what direction to take or what to do next. Such a feeling of helplessness can be devastating emotionally and can create all sorts of symptoms.
Finally, there are all those good work ethic messages you learned growing up and which you are probably still replaying from the early stages of your condition till now. Many people feel that stopping work is “giving up” or “surrendering” to the medical condition; that the disease is now in control of his or her body and all he or she can do is watch helplessly. Who wouldn’t have emotional issues if, in the back of their mind, they keep thinking things like:
- You’re giving up by stopping work.
- You’re a quitter.
- You’re surrendering to the disease.
- You’re no longer a contributing member of society.
- You’re taking a giant step closer to “The End.”
- You’re going to “milk the system.”
- You’re weak, needy, plus many other not-so-nice adjectives.
Of course, none of these are true or even rational, but our emotions aren’t based on reason.
Those messages even may get communicated from friends and family. People who haven’t been disabled do not understand the price you must pay for stopping work. I have heard some refer to their disabled friend as “retired” or “taking it easy.” There may even be “jokes” about “envy you.”
Also, do not forget that disability benefits are not always easy to obtain, whether from a private insurance company or Social Security. A denial, which should always be appealed, can cause those messages to replay even louder.
Family dynamics as well as your social relationships will be changing. Your family and friends have known you as one person. Now, even though it is not true, they may perceive you as someone different. This can cause a strain in these relationships that you need to be ready to recognize and work through.
What can I do about it?
Fortunately, there’s a lot you can do about it, and all of the suggestions below would come under the overall title of “Take back control of your life.”
- Control how and when you leave work – Know what you are doing. Make your plans; do your re¬search; create your own timetable for stopping work.Take one step at a time to avoid being over¬whelmed – You can do this by breaking down your tasks into smaller steps. First, work with your doctor on the process of leaving work, and then apply for the employer’s sick leave and short-term disability. Then decide whether to continue the employer’s health insurance to COBRA or switch to a health plan under the Affordable Care Act (Obamacare). Next you should apply for your employer’s Long Term Dis¬ability coverage, if available, then for Social Security Disability (SSD). A list or timeline will help you focus your attention on the next small step without being overwhelmed by the entire process.
- Build, activate and use your support network – Your family, friends, and caregivers can give you emotional support as well as practical assistance, but you may need to ask for it.
- Consider short-term therapy – Perhaps your support network is strong enough that they will give you all the help you need to get through this time. Many clients have also found that a few months with a therapist trained in the emotional issues of the disabled can be of great help as well.
- Speak up, politely but firmly – Do not hesitate to tell those who don’t understand what you are going through that this is not a vacation and you wish you could return to work and understand any snide or “comic” remarks are coming from ignorance.
- Be a little selfish – Finally, it is time, for at least a while, to take care of yourself first. You have been accommodating to others and have been putting their needs and wants ahead of yours. It is time to take a break from that. Let them know as much as you love them that you need to focus on yourself right now, and deeply appreciate their support through this period.
But what will I do once I go on disability?
Many people worry that after they leave work, they will have nothing to do. Some people have an image of themselves lying in bed, face to the wall, doing nothing but waiting. That’s not the way it is. More than one of my clients has worried that they will have too much time on their hands only to return after leaving work to tell me they are so busy, they have no idea how they were able to work full-time.
Initially at least, there’s a lot to do, applications and claims to file, health insurance to adjust, government benefits to apply for. I have heard complaints that, initially, they are busier with those than when they were working; an exaggeration perhaps, but it may seem so.
If you are the type of personality that was always busy before, trust me, you will be as busy as you want and are able to be once you leave work on disability. Depending on how you feel and your interests, there are classes to be taken, family to be enjoyed, other people or agencies that you could volunteer to assist.
Be aware that you can expect some emotional upheaval when leaving work. Recognize it as a natural part of the process and don’t let it scare you into believing that it is more than just a passing reaction to what’s going on with your life at the moment. It will pass; you will move on. Life will continue; you will be healthier and happier for it.
Jacques Chambers, CLU is a recognized expert on benefits issues, and a frequent contributor to the HCV Advocate. Permission to reprint given by Jacques Chambers and the HCV Advocate.