So You’re Chronically Ill, Now What?
- What’s the prognosis?
- Some good questions to ask as a rule or thumbs are: How long will I have to deal with this? How will this affect my quality of life (my life as a student, professional/employee, parent, spouse)? What can I expect as time goes on?
- You want to be an expert on your condition! For much of my experience dealing with Endometriosis and Adenomyosis, knowing as much about both diseases has served me well and helped me to make informed decisions to turn down painful and unnecessary treatments. Although this has garnered animosity from some providers I’ve encountered, the right provider will be open to having a dialogue with you about YOUR treatment.
- Know what treatment options are available
- Are holistic options available? New trends or recent research on treatment? You may have to do some of this research on your own. Look for experts in the field of your disease so you can learn as much as possible about the misinformation out there and doctors who may be able to treat your disease with the competency and expertise the regular practitioner may not have.
- Know your rights
- Having gotten sick on the job myself, I can’t tell you how much money, peace of mind and court fees I’ve saved myself from by being knowledgeable about my rights as a patient and employee.
- Know that your doctor cannot force you to take any treatment you do not want and you have the right to end your relationship with a doctor when you see fit.
- You can also file a grievance if you feel you have not been treated fairly or right with the hospital the doctor works at.
- You can also file a complaint via the medical board as well
- Know that your employer has to abide by certain state and federal laws when dealing with a sick employee. It is illegal to intimidate or discriminate against an employee who is ill.
- Look into FMLA (Family Medical Leave Act) for your state; each state has FMLA laws and other specific laws for their state (i.e.: New Jersey Paid Sick Leave Act)
- Look into ADA Accommodations as well
- Read your employee handbook about your rights to have benefits provided by your employer, leave of absence, time and attendance and options to tele commute (or work from home) if you get really sick
- Learn about COBRA benefits, how much they cost, and when they would apply to you
- Learn about resignation and how it should be a last resort or as a conscious choice not something that is forced upon you
- Look into unemployment pay laws in your state
- Look into social security disability – this is complicated and should only be used if you are severely and permanently limited by your disease
- Know the costs
- Will my treatment be covered by my health insurance?
- Are there any agencies that are paying for this type of treatment (i.e.: there are a plethora of places that provide copay assistance, transportation, ect for cancer patients)
- Is there an out of pocket maximum on my insurance and do I know how much it is
- Once you reach your out of pocket max you no longer have to pay co pays or pay anything else out of pocket. See your individual benefits explanation to see what max limit is. This amount is tracked by your insurance company. You can reach out to them to determine this. Most doctor’s offices won’t tell you this and let you continue to pay out of pocket.
- Risk management
- Nothing is more disheartening and scary than getting a huge surprise medical bill. I’ve had plenty of them myself *gasp* and a lot of times these bills were sent in error! Don’t pay a medical bill upfront without inquiring into why you’re receiving the bill first! Even if it goes to collections, most hospitals do not report to the credit bureaus (so your credit won’t be affected) until you know you actually owe the bill and look into it, don’t be so quick to give up your coins!
- Look into getting short term disability insurance (SDI)
- For conditions like endometriosis, you may qualify for SDI if you have co morbid conditions that limit your ability to work
- Pro-tip: If you strongly suspect you have endometriosis or fibromyalgia, before you are officially diagnosed, get an SDI policy (from your job during open enrollment or from an outside company like Northwestern Mutual or Combined). You’ll qualify and then you will get paid when you’re out of work for surgery or really bad flares, ect. However, please note, most SDI companies don’t cover pre-existing conditions until 2 years after you have the policy.
- Look into saving money for a rainy day and cutting unnecessary spending
- Save your money, you never know what can happen. I ended up in the ER in another state at the beginning of 2018 before I met my deductible and I had a huge bill afterwards. If I didn’t have savings I wouldn’t have been able to afford that bill!
Even though I am a therapist, my journey dealing with Endometriosis and Adenomyosis, has been a wild ride. I’ve learned so much and want to make sure I share this info with other women suffering from chronic illness.
*Disclaimer: This information is based on my personal experiences dealing with endo and adeno. Do not hesitate to fact check or do your own research before you take any of the advice or tips listed here. Thank you.
Comment below to share additional tips or thoughts! I look forward to hearing from you! Until the next post! God bless!