Living With Chronic Illness When Family Just Doesn't Get It

Since being diagnosed with systemic lupus erythmatosus (SLE) and fibromyalgia several years ago, my life has changed dramatically. It’s split my daily life into a clear before and after. The aftermath of being diagnosed and treated for these conditions has left me disabled and unable to maintain gainful employment. I’ve lost the ability to maintain the physical activity levels I once enjoyed. I must also carefully prepare for and meter the amount of sunlight and other UV exposure I receive, lest I send myself spiraling into a lupus flare.

Driving any distance is difficult for me, both from disease symptoms as well as medication side effects. I do have “good days,” which are still a far cry from a “normal” day I had before I became chronically ill. However, even these days I must be careful not to overextend myself, because I end up in a situation where I must pay the piper. This means if I attempt to accomplish all I desire, I’ll be left in a fibro and/or lupus flare, which can leave me bed bound for days or weeks.

However, none of this hurts so much as the personal consequences of living a chronically ill life. I’m not naive enough to expect any of my friends to have stuck around for the life I live now, but I had hoped my family would have at least been able to be a support system in some way. Even having somebody who would respond to my text messages on my worst days would make a huge difference in my anxiety levels. Lupus and fibro are really frightening to experience, because I never know what my body is going to do or feel like from one day to the next. Sometimes, especially with fibro pain, fatigue and brain fog, I don’t even know how I’ll be feeling in thirty minutes if I dare to do something as mundane as complete my grocery shopping.

My spouse has stuck by my side, despite the fact that I was diagnosed shortly after we were married. She surely didn’t sign up for this, and I’d be lying if I said it hasn’t taken its toll on our relationship, but we are still together after years of riding the rollercoaster of my health. Unfortunately, my sister with whom I was very close to growing up has completely ignored my struggles.

When I was first diagnosed, she and her husband with whom we were both childhood friends were supportive enough to at least acknowledge the fact that I was sick with lupus complications and exhausted from the pain and malaise of fibromyalgia. However, as the years wore on and I wore down, so did her and her husband’s acknowledgment of what my life truly was developing into. My ability to maintain gainful employment slowly declined. Even after applying for disability benefits, my family’s budget shrank to a shoestring.

My sister is successful in her career, and I felt as though she blamed me for my lack of income. Poverty is a complicated issue, and society acts as though being in possession of too little money is always the fault of the individual. Many people who have been blessed with good health don’t seem to understand that sometimes you can’t pull yourself up by your bootstraps and power through every challenge. When your challenge is a chronic illness, there is no “get well soon.” There is no medication to cure my conditions, and treatment has sometimes left me sicker than I felt before.

I felt as though my sister resented my inability to work, and she would often make comments that were thinly veiled accusations as to my responsibility concerning my unemployment. When I would attempt to explain to her what my barriers to getting and keeping a job were, she would completely ignore my words and steamroll ahead with her proposed solutions to my situation. Problem-solving and listening to advice are great, and I alway enjoy hearing a point of view that opens my mind to new possibilities. However, when someone is throwing out “solutions” to a problem that just isn’t a candidate for a quick-fix, it quickly turns into invalidation and blaming.

My sister’s phone calls slowly decreased into nothing, unless she was coming into town to visit other relatives and needed to stay at my place. Her text messages decreased as well, and it was obvious she only wanted to discuss herself while hearing a sanitized and cheered up version of my life. As I descended into poverty and struggled financially, she was insensitive enough to suggest I take a cruise with her for the holidays. I couldn’t believe she was callous enough to pretend to be ignorant of the fact I was struggling to keep the power on and gas in the car. I had already become a regular at the local food bank, trying to stretch my food-assistance budget to last the entire month. She was clearly refusing to acknowledge my life situation, because she refused to care about my chronic health challenges.

Unfortunately, my sister may have construed my desire to share my struggles with her as begging for help or as wallowing in self-pity. Instead of taking the time to offer emotional support and attempt to understand what developing chronic health problems in my late 20s was like, she donned her judgment cap and decided I just wasn’t trying hard enough.

I know it’s hard to understand how one could sleep all night and awaken as tired (or more so) than when they retired for the night before. It’s a crazy concept for a healthy body to grasp, understanding what it’s like to experience the flu…always. How could someone feel like this, the able-bodied person asks themselves, if they were truly trying to be well.

I ask myself this almost daily, as confounding as these illnesses are. How can I eat so healthfully, exercise daily to the best of my ability and take so many supposedly beneficial supplements — and yet still be always ill? That’s the thing about chronic illness: you can do every healthful thing under the sun, but still be sick and disabled.

Spoonies must face and accept this truth. Perhaps my sister is existentially threatened by the fact that we, as fragile humans, actually have very little control over our health and ultimately our life. Maybe that’s why the disabled community is so marginalized; we represent peoples fear of frailty and mortality.

Spoonies embody and live daily the harsh reality that our life and health isn’t contingent upon what we eat, how much we exercise or what vices we deny ourselves. Sometimes, you just get sick and you can’t better. You too may have a time in your life where you’re unable to work and be reduced to asking for help no matter the level of your personal need for independence.

It’s a bitter pill to swallow, realizing you’re unable to provide for yourself and your family. Certainty, applying for public assistance can feel humiliating and invasive. Applying for disability means countless strangers are suddenly able to view your confidential health records, passing judgment as coldly and impersonally as if they were buying a kitchen appliance. You’re reduced to what boxes can be ticked, and vulnerable to ageism, sexism, racism and any other prejudice the numerous, anonymous adjudicators may hold.

I don’t want my sister to feel sorry for me. I just want her to acknowledge that my life has gone astray from my plans, dreams and hopes. When she periodically texts me now, she still asks how I’m doing, and I reply in all honesty. My last response was detailing how my family was doing (very well, thank you) and talking about our dogs. I also told her I had been struggling with a particularly difficult lupus flare.

She responded to every part of my text…except that I was struggling with my health. Her lack of words spoke volumes to me. What I heard her saying through her silence was:

I don’t care about your health or your life.

I don’t care to acknowledge you have a serious, chronic and possibly life-threatening condition.

I don’t care you’re lonely and unable to have the life you worked for and desire.

I don’t want to acknowledge your pain because I can’t or won’t take the time to contemplate and empathize with your situation.

I only want to talk to you if you let me actively ignore the uncomfortable fact that chronic illness has permanently changed your life.

In fact, later in the day my sister asked to call me to discuss her pet’s failing health. You know what? I took her call, listened and definitely empathized with her problems. Not once did she ask after my own health, my own problems or truly cared to check in with my state of mind. I’m lonely, I miss and love my sister, and I always want to talk to her. I’m always here for her and ready to lend my ears to her problems. I just wish our relationship went both ways.

I am acutely aware that I don’t have much going on in my life for myself right now. It takes every spoon I have to live for my spouse, our child and our pets. I don’t like it, but lupus and fibromyalgia are the bosses of my day and sometimes I just don’t have a lot to talk about except how I’m waging a war every day. I’m trying to keep my head above water and have faith that the next day might be better.

I’ve read that denying a person’s pain is one of the most damaging forms of emotional violence. It feels like I got beat up by my older sister every time we talk now, but instead of our childhood fights where we pulled ponytails and threw Barbie dolls, this form of violence looks like innocuous small talk. If I could tell my sister one thing I know she would hear, not with her ears but with her heart, it would be:

“Please don’t act like my problems are not real just because you’re afraid of them or don’t understand them. Please never stop asking how I am, even if my answer is always that I feel poorly. Please don’t let my illness erase the fact that I’m still your little sister. I’m scared and lonely a lot of the time, and I just need you to be there for me and not ignore my pain.”

To my fellow spoonies who have similarly been ignored, dismissed and disrespected — I hope my story bring you a sense of camaraderie and validation. We have to work so hard just to exist everyday, while those around us often misunderstand, abandon, exclude, disrespect and ultimately ignore us.

To those who love a spoonie, I hope my story helps you to understand that we never want you to stop asking how we are no matter how negative our answers may seem, or stop inviting us out no matter how many times we ultimately no-show. The fact that you’ll still be there to listen and believe our situation might be the only thing keeping us from spiraling into hopelessness and isolation.

It would mean everything to me if I told my sister how I felt, and she could respond as simply to say, “I’m sorry you feel that way; I’m here to talk to.” Don’t forget, our words to one another can be lifeboats in disguise.