Captain of Her Soul: How to Deal with Being Sick and Single

Guest post by Misdiagnosed author, Nika Beamon

Published on July 28, 2014 by Bella DePaulo, Ph.D. in Living Single, Psychology Today

[Bella’s intro: Back in April, when I had just moved and was unpacking boxes from the place where I had lived for nearly 14 years, I was beyond exhausted. But I was eager to read an advance copy of a book I had in manuscript form, because I know the author’s work and have long been impressed with her. So I thought I’d take a break and read the first few pages. Nika Beamon’s memoir, Misdiagnosed: The Search for Dr. House, was unbelievable. It was riveting, harrowing, and inspiring. I could never endure what Nika has in her search to find someone who could tell her what was wrong with her. To use a cliché about Nika’s book that I have never used before and probably will never use again, I could not put it down. In this guest post, Nika offers some life lessons for people who are single and seriously ill. Thanks, Nika!]

Captain of Her Soul: How to Deal with Being Sick and Single

By Nika Beamon

Here’s the honest truth: Being sick and single sucks. I’m just saying the words every chronically ill person thinks from time-to-time. This statement in no way means I think running out and finding any partner is the solution, it’s certainly not. A relationship has its own burdens, hurdles and drawbacks; those issues can be compounded by a mate’s prolonged illness.

However, if you do find yourself perpetually ill without a mate, there are a lot of things that have to be considered. Some of the biggest concerns: Who is going to take care of you, if and when, you can’t care for yourself? Can I afford to live on my own? Who will make my health care decisions and take care of my other affairs if I can’t?

I’ve had to confront and answer these questions all of my adult life. I’ve suffered from an autoimmune disease for at least the last 20 years, if not longer. The timeframe is a little sketchy because I spent years being misdiagnosed for doctors. Since 1993, I’ve been to 22 doctors in at least four states and I’d often considered giving up my quest to find out what ails me. I didn’t because I knew my feelings were just the result of frustration and depression. I’m not alone. According to a 2012 report by the Cleveland Clinic, “up to one-third of individuals with a serious medical condition experience symptoms of depression.”

The lengthy health battle also took a devastating toll on my finances. I’ve been to the brink of bankruptcy and back. Unfortunately, I’ve since learned major illness and financial strain go hand-in-hand. How could it not? The few times I was on short-term disability, I received the maximum New York disability payment of $170 a week, after a 7-day waiting period. To survive, I relied on my savings and help from my family and select friends.

Of course being chronically ill made it difficult to maintain steady employment. Still, I wasn’t about to become dependent on the state, lose my home and everything I struggled to accumulate. So, I’d fight through the pain and fatigue, dragging myself to my desk and propping myself up for grueling nine hour shifts. Even doing that, I was like a lot of other Americans, barely getting by. “NerdWallet” found, 15 million people will deplete their savings to cover medical bills. Another 10 million will be unable to pay for necessities such as rent, food and utilities because of those bills.

I was always aware that getting back on my feet as soon as I could was the only way I’d keep my head above water by earning an income and keeping health insurance. My pre-existing condition, until recently, made it impossible for me to buy medical coverage without a job. [Bella’s comment: Here’s Nika’s account of how her insurance situation improved dramatically.] Despite my best efforts, I realized I needed to take proactive steps to ensure my financial future.

I bought additional life insurance that didn’t require a medical exam. I made sure the amount was great enough that all of my medical bills would be covered in the event of my death.

The next thing I did was to get a will drafted. I wanted to make sure my loved ones wouldn’t have to fight the state for my assets while grieving my loss.

Third, I filled out a health proxy. It was the only way I could be sure my wishes about organ donation, resuscitation, and all aspects of my care would be respected. It also spelled out the people allowed to see and be with me at the hospital who were not relatives.

Then, I had my attorney create a Power Of Attorney, allowing someone to take control of my finances, etc… if I become incapacitated.

Last but not least, I created a support network; a group of friends, co-workers, church members, family members, who could come by to help me when I wasn’t well.

By taking all these steps, I’ve found being sick and single is a whole lot easier. I now have peace of mind. I may not be able to control the illness ravaging my body but “I am the captain of my soul.”