Living a double life

Compartmentalizing areas of your life is not uncommon, whether to deal with a tragic loss, unhappy relationship, or childhood trauma, we all do it to some extent. However, sometimes I think that similar to someone with a split personality, I truly have no choice but to compartmentalize my illness and exist as two distinctly different people. My friends and family know me as Lisa, the person who is almost always smiling, an animated conversationalist, perfectionist (to a fault), cooking fiend, lover of makeup and my Free People wardrobe, and terrible at asking for, or accepting, help.

Only my husband, Joel, knows the other Lisa, the person who doesn’t smile enough anymore (despite his charm and witty sense of humor), who spends the majority of time at home in bed, barely has the stamina to take a shower or wash her hair – let alone put a speck of makeup on, lives in Tommie Copper compression wear, watches way too many cheesy Hallmark movies to pass the time, and couldn’t make it through the day without his help. This is the Lisa that can’t sit or lay down without an ice pack or heating pad, complains about pain and a million other symptoms on an hourly basis, has a supplement and medication schedule that would make a PMP-certified project manager’s head spin, and hasn’t had a good night’s sleep in years.

While this may all sound like I am being disingenuous to the majority of people in my life, the truth is – I AM the first Lisa. This other Lisa, the one that Joel has so compassionately taken care of for all these years, is not me. Invisible illness has stolen my identity in a very unique way, and has made the fight for an answer so much harder. I have been told on several occasions that because I work so diligently at putting myself together on the outside, it has made it much more difficult for people to believe what is going on in the inside. I get it. There are diseases that are much more visible, and I think my own stubbornness and sheer will has prevented me from making this disease more visible. I can think of several situations in the past year that I would have greatly benefited from a wheelchair, but would I get one? No. I have often considered a disabled parking pass, but have I applied for one? No. Considerate friends and family often ask to help me carry things, but do I ever ask them first? No.

The majority of people out there with invisible illness are living this double life because the alternative is no life.

On one hand, nobody wants to hang around someone that constantly looks sick, acts sick, and talks about being sick. So, some level of hiding an illness helps to maintain friendships, a career, and a life outside of being sick. Without the occasional coffees and lunches with friends, trips to the grocery store, or date nights sitting at the local watering hole with Joel, I surely would start to lose my sanity. The lack of human interaction and isolation that chronic illness brings is certainly not good for one’s mental health, especially if that someone is an extrovert by nature.

On the other hand, those who haven’t experienced chronic illness may wonder how someone so sick can go to dinner with friends, hold down a job, or take a vacation. And as for the hair and make-up, I actually didn’t care about that stuff until after my illness started. I often tell people that the days I look the best are often the days I feel the worst. Those small, seemingly vain, outer appearance tools can help a sick person feel just a little more normal. Unfortunately, it’s the “looking healthy” part that unfairly delegitimizes invisible illness for so many.

It’s a true situation of “you’re damned if you do and you’re damned if you don’t”. This is the reason I have rarely posted anything on my personal Facebook account over the past year. I truly believe social media, where I posted images of happy moments in my life, could be one of the reasons I was turned down after applying for just a few months of Short Term Disability insurance last year, a policy I had been paying for my entire 20-year career. I didn’t look sick enough.

I want to be clear that I’m not writing this to throw my own pity party, but instead, I write this to raise awareness that there are so many people you interact with every day that could be living this same double life. Something I learned a long time ago is that everyone has their unique cross to bear in life, whether it be a tough marriage, mental illness, financial instability, or other invisible challenge. Despite trying to keep this in mind, I also catch myself forgetting this important lesson in empathy from time to time.

Even after writing this, and exposing this double life, I will still be that same Lisa when you see me next, the one with the big smile, who talks a lot, and loves her makeup. Although I have certainly been more vocal about my illness over the past several months, I still try to compartmentalize and not completely burden friends and family with a constant barrage of complaining. I now have a blog for that ;).