ill enough to warrant a diagnosis? Or that it wasn’t clear? Was it just his way of saying he didn’t know? My stepdad would helpfully point out that the lack of definitive answers from doctors is the reason they are said to be practicing medicine.
I spent much of my twenties feeling like my head was halfway in the guillotine, waiting to be shoved all the way in so that someone could deliver my death sentence and lower the big boom.
In teaching hospitals I was poked and prodded by thirty-plus medical students who said things like, “Wow, that rash is really cool!” Never mind I was a human being, in pain, scared out of my mind, and wishing I could be anywhere but here, and have clear skin without a painful, oozing rash (a major indicator that whatever my ailment, it was in full form). Could it be fatal? Thanks so much, dear, young medical student, for telling me how cool this rash is.
Instead of saying that I just smiled and listened—and then cried when I got to my car. If you’ve ever visited a teaching hospital, you may have experienced the same sort of insensitivity. Did you find it hard to remember that they were young and immature and didn’t mean to dehumanize you? I did.
I had full-fledged doctors who, by the way, didn’t have my disease, tell me to buck up and get over it; it wasn’t that painful. How could they possibly know? They implied I was exaggerating when I said I couldn’t walk up a flight of stairs; maybe it was all depression and that I should stop looking for an excuse to be sad; or there were people much sicker than me and that I should be grateful I didn’t have a terminal disease like the person they saw in the last room.
Why did people who didn’t live my life feel they had the right to tell me how I should or should not be feeling, or how much pain I should or should not be experiencing? I wondered why these people had gone to medical school if they already thought they knew everything.
Raw Emotions During Your “Limbo” Time
If you remember the emotions you felt while going through your “limbo” time—the time before diagnosis—know you are in good company. Many, perhaps most, autoimmunity patients go through years of misdiagnoses before getting the correct one. It’s upsetting, frustrating, and scary.
What a relief it was to finally have an actual diagnosis. I wondered if it meant I was glad to be sick, but I realized it wasn’t. I was just happy to have answers so I could finally move forward.
Before and immediately after the diagnosis, my life changed dramatically. My education and jobs were affected. I was fortunate to have some understanding bosses who allowed me flexible hours, or coworkers who picked up the slack when I was exhausted. When I knew I was getting close to using up sick days, I would look for a new job; this usually happened around the six-month mark. Repeatedly.
My resume from the first couple of years after college looks a bit like hopscotch. I had five different jobs between January 1998 and April 2000, and it wasn’t my work ethic. I outwardly blamed it on needing to find myself, but my dark secret was that I was always one step ahead of being fired for absences. If it wasn’t one aspect of my illness, it was another; I started thinking I was making it up myself. I was twenty-two years old and barely able to function.
The Effect on Your Family
People talk about how chronic illness tears families apart; this can certainly be true. It is stressful to feel sick all the time, and I know how stressful it is for my husband, Scott. Even on days when he has a project due at work, I have to call him, crying about how badly I hurt and how I cannot get out of bed to make lunch for our daughter. He comes home to care for us, despite the inconvenience.
Or the days when there isn’t anything wrong except I am so fatigued that lifting my arm feels like a full workout. Scott steps in without fail and takes over everything in the house. Consider the heap of medical bills we incur every year that he somehow finds a way to manage. Even though we have insurance, with deductibles—which I’ve used up by January each year for the past eight years—we are never without an overwhelming amount of medical debt.
There are times I’m sure he would just like to come home from a long day at work to a normal stay-at-home wife and mother, a clean house, and a ready meal. I bet he wishes he didn’t have to do the dishes because my hands are too weak and sensitive to the hot water; carry the laundry up the stairs or vacuum because I am not strong enough; haul out the trash; or perform any of the dozens of chores I am unable to do even on my best day.
I watched Scott go through our two miscarriages. Yes, they were likely due to autoimmunity, as the body tries to eliminate the fetus in utero, attacking it and cutting off its flow of nutrients because the body sees it as a threat to my health. It’s hard enough for me to go through a miscarriage, but watching my love lose his children at the same time, too, and knowing it is because my body failed to carry them—there aren’t words for the pain and the guilt I feel.
Sage, our little girl, is a miracle. She is here by the grace of God, my sheer will, a dedicated high-risk prenatal doctor, my acupuncturist, and some immunosuppressant drugs. Together we coaxed and cajoled my body into holding on to her and bringing her into the world—safely.
Loved ones of people with chronic diseases take on a lot more than they bargained for. My husband knew I was sick, and he chose to love me anyway. I didn’t sugarcoat it when we were dating. I didn’t yet have a specific diagnosis, but I told him what life might be like with me. He chose to be with me anyway. He agreed to be there for me when I couldn’t take care of myself, and he lives up to that promise every day. It is not easy for me to watch him make those sacrifices.
Expect Everything to Be Affected
Even prior to diagnosis, autoimmunity played a key role in my relationships. It affects everything, from your everyday decisions to your emotional stability and trust in yourself and your partner—even your sexual relationships. A former partner would carry me up the stairs of my apartment because my hips and legs were so weak I would have had to crawl if I’d been alone. You don’t know vulnerability until you become that dependent on another human being. At the same time, you are also gifted with the beautiful opportunity to feel loved and cared for on a different level.
It can be hardest for your parents. I hear my dad cry on the phone at any health news, both good and bad. I watch my mom wrestle with worry over every little test and appointment. As a mom myself, I know how helpless my parents must feel watching their “baby” in pain and not being able to fix it. They, too, have done everything they can to help, sometimes to the point of smothering me.
Friends have played a huge part in enabling me to continue living in a way that resembles normalcy. Yet they are the first to suffer the consequences of broken promises and broken dates when I cannot go through with plans.
Autoimmunity doesn’t just happen to the person who’s blood tests, magnetic resonance imaging (MRI) tests, electromyograms (EMGs), and biopsies turn up positive for the disease. Autoimmunity also happens to families, friends, and coworkers. With this book, I want to honor not just “us” who are the patients but “us” who are the people—the community—who help us patients keep going.
I have often wondered whether death would be a merciful escape and hear this from other patients as well. Perhaps you have even been there yourself. But I promise those moments are fleeting. People around me have helped me decide to keep going in the darkest of hours, and I hope this sharing of my experiences will help you decide you can keep going as well.
What “You Create Your Own Reality” Means
As hinted at in Neale’s quote, the idea that we create our own reality has been misinterpreted to imply that if only we are strong enough, we can cast
