The 6 Brutal Truths of Chronic Illness
There are a few quintessential truths you discover when you have a chronic illness, especially when you get to the point like me where it has devoured your entire life and spit you out half-chewed. I’ve veraciously read through similar lists online over the years, hoping to feel less alone. It seems most of us seem to struggle with the same brutal truths at the end of the day:
1. You are going to grieve…a lot.
I remember in my 20s grieving my two to three migraines a month. It was hard to feed a family, keep a job, and clean the house – much less play Super Mom, when you found yourself at the ER again, IV meds rendering you useless for days on end, even after your discharge. I thought it was transient thing, an annoyance, as my mother’s migraines were not severe as she got older, and they were only occasional. I thought it was so unfair that I could only drink on weekends, and only when I had someone else to watch my kids, just in case it triggered a migraine. I was so naïve.
Today, at 41, I would give my left arm for the grievances of my 20s or even my more complicated 30s when the hospital stays became longer and the prophylactic side effects first showed up. I don’t drink at all anymore, maybe a sip on milestone birthdays like my 40th – and never red wines, champagne, or anything that isn’t clear upon distilling. I would say I never sleep late, but the truth is I rarely sleep at all without help. I try my best to keep a schedule, but my eating, sleeping and even bathing is completely at the mercy of science, the weather, and my current mental and physical state. I can no longer hold a job between daily pain, insomnia and side effects. I cannot afford the maid service I had when I worked, but the chemicals make me sick so I clean constantly, but in 20 minute spurts as I am able. My kids are grown now and don’t need me every day, for which I am thankful, but my illness makes it even harder to be a mother when they aren’t in the next room and I can’t leave the house for days to weeks at a time.
I think the thing I think I grieve the most isn’t the pain or even the hair loss or weight gain, but the total loss of control. Smells make me vomit, sounds bring on pain, temperature fluctuations leave me bedridden – and I have no control over how it will affect me or any way to avoid it all. I cannot contribute financially or physically to my household, even when I am feeling my “new normal” best. Just when I climb a peak, some new trauma sends me spiraling backwards in my grieving process to the stages of sadness and anger again.
The ugly truth is that you will grieve the old you and your old life over and over. I had one therapist tell me I’ll never find acceptance, and this new normal is a baggage I’ll carry with me until they find a cure or I die. It might sound crude, but it changed the way I thought. I want to wake up one day and cry about it and be totally done, but now I know that isn’t how my grieving process works this time.
2. Let go of your old standards.
As I mentioned before, things you want to do are now sometimes impossible. Sometimes you change how you do things. I now clean with crappy non-toxic (and not as effective) cleaners and in short spurts as my health allows. I found vinegar works great for cleaning toilets and showers and doesn’t make me sick like most bathroom cleaners. When I have a big job or company is coming, I have learned to lean on my husband and ask for help, which was very challenging as a self-made woman who wants to be in control.
Other things, like fitness, are changed forever. I love hearing a doctor say you should exercise for your mental health, but for your chronic illness, keep it low-key, low-impact, and with your medication, you probably will get winded walking to the bathroom if you don’t pass out entirely. Really?! Good thing I am not throwing away money on a gym membership and my elliptical doubles as a clothes hanger.
I remarried the year before my illness really hit the fan. We barely got home from our honeymoon before I had to start crossing activities off my “able” list. He’s never said one mean word to me about it, but being years younger than me, I hated taking away his life as I gave up so much of my own. I could write an entire novel on things I cannot do with my disease such as concerts, clubs with flashing lights or loud music, amusement parks, outdoor hiking, bike riding, drinking, eating at a new restaurants, etc. Some days, I’m lucky to shower or change my clothes. My husband tells me he doesn’t need to forgive me for taking away his life, that it’s not my fault. So, why is it I can’t forgive myself and change my standards to reflect my new way of living?
3. Every single thing that goes wrong is one thing too many.
I used to think I was a hell of a gal. I had been a single mom, a student, worked full-time, and freelanced some on the side. My kids were high achievers and we never wanted for anything, even if I bought most of our clothes at off-season sales and we ate more cheap spaghetti than every person in Italy put together. When things happened, I rolled with the punches. I was too busy to be anything but reactive. I even dealt with tragedies in kind. I was what everyone else needed me to be in the moment. Sometimes years later, I’d find myself alone on a Sunday afternoon and break down and cry over the loss and then I was done.
That mindset is a thing of the past. My germaphobe tendencies caught fire once I was at home on disability. Suddenly, hotel rooms were unspeakable disease chambers. I actually convinced my husband to buy a camper because I couldn’t imagine sleeping amidst the germs, unknown history, and risk of bedbugs at even five-star hotels.
But it didn’t end there. When the oldest of our three dogs, Lucy, died in January, I lost my mind. I grieved so hard I wasn’t sure I’d ever be OK again. It took me a few weeks to pull myself together enough to go on with even my simple household routine again. Just a few months later, the youngest dog got sick and had to be hospitalized. I was so anxious, I couldn’t sleep or eat for days.
Even when she came home, I had to have a hand on her chest to be sure she was breathing. This was not normal behavior for me since I’d brought a sick human baby home from the hospital 20 years before.
But everything is too much when you’re already fighting a chronic illness. My dogs are my world. Since I’ve been home, they eat with me, they sit on the bathroom rug when I bathe, and they crawl in bed with me when that’s all I’m able to do. They don’t leave me to go to work or move away to start new jobs. Losing one of them was incomprehensible because I’d already lost everything else. But life doesn’t stop just because you’re sick and overwhelmed. You will still struggle with losses and crises will still occur, and in my experience, each new thing is more devastating when you’re already grieving so much.
4. When you have a chronic illness, every part of your health (and life) is affected.
Just about the time I had come to terms with my dog’s death, I broke two teeth. My regular dentist couldn’t see me and I called every dentist in town until I found one that could fit me in. Leaving it open, raw and screaming wasn’t an option as each new pain aggravates my pre-existing conditions. The new dentist pulled one tooth, as it was destroyed beyond saving, and repaired two more. The first day, the bleeding wouldn’t stop. Then I developed an infection and massive swelling of the tissues in my mouth. Then the migraine kicked in, no doubt aggravated by the stress and pain of my teeth.
Sure there was something he wasn’t seeing, the dentist sent me to an endodontist. The endo couldn’t even pinpoint where my pain was originating from since I was just one big open screaming nerve. He told me he couldn’t help me and I burst out into big ugly tears in his office. I bawled and tried to tell him I’d never had this kind of problem or pain with my teeth before. I tried to explain between sobs to this stranger and his nurse that my entire life now was about pain and I couldn’t take anymore. I begged him to pull every tooth in my mouth and give me dentures.
The endodontist explained he could not do that, but me wrote a few prescriptions and deadened my teeth in hopes to buy me enough time to eat some food while I was numb. He wanted me to refuel so I didn’t crash before the anti-inflammatory meds, the steroids and the pain pills had time to work. I was so devastated that once again something so simple had become a huge, overwhelming mess – all due to my stupid chronic illness.
The antibiotic from the endodontist gives me diarrhea. Not being able to eat solid food with my migraine meds due to the pain makes me nauseous. Vomiting causes my dental pain to flare and ulcers to form inside my mouth from all the extra acid. I’m not sleeping well because of the pain, even with pain pills, which is triggering more migraines. My prophylactic migraine medicine most likely was the root of new habit of teeth grinding and dry mouth, which causes the dental problems in the first place. I’ve spent thousands of dollars to only feel worse. The cycle never ends and nothing is ever as simple as it used to be.
5. It’s not OK. I’m not OK. So stop freaking asking me.
I try to polite when people ask me how I’m doing. I like to believe most people are just being polite and it’s more of a rhetorical question. The truth is they don’t want to know. The truth is it sucks. I hate my life many days. I hate my house, my town and the same yoga pants I wear every day because they are all that fit.
“Well, today I’m balding, overweight, have massive diarrhea and have cried for three hours straight over nothing – but ask me tomorrow,” doesn’t seem like the thing people want to hear. Yet, saying “I’m fine” seems like an injustice when it’s the first time I left the house in days. So here’s the truth I’m not going to tell you: I’m not OK. I am unhappy with my appearance due to the ravaging effects of my disease and its harsh treatments. I feel like crap physically, but my mind is perfectly fine, which makes me bored, restless and cranky…but unable to do diddly squat about it. I want to go back to work, lose weight, and take a scandalous drunk vacation to the South of France, but none of those things are possible.
Now, stop asking because I’m never going to be your definition of “OK” again, and I hate this moral dilemma of lying to your face or having a mental breakdown as you watch.
6. Pick your battles.
I recently saw a new neurologist. His nurse asked me what I did for a living. I told her I write and I volunteer as I am able, assuming she would know how much of an improvement that was for me. Instead, she suggested I go back to work, get off disability, and just make a career change to better myself. I exchanged incredulous looks with my husband. We’ve heard this one before and it makes me furious. It isn’t even worth my breath to try to explain to someone, even someone in neurology who should know better, how hard it is to keep a job when you can’t show up reliably, your memory and skill set is gone, and even when you were there, you spent half of your billable hours in the bathroom or getting ready to leave early because someone wore too much aftershave. She doesn’t know me or my situation and I have to try like hell to not let her, or people like her, get to me.
I think we’ve all been there, that moment when your medical team has given up on you or stopped believing in your illness. You’ve failed all their treatments or don’t fit in their preconceived notion of a disability and they are just done. After decades of fighting this battle, I now know this means it is time to move on from that relationship. This is true of doctors, co-workers, friends, and sometimes even family. Having a chronic illness doesn’t put you on the defense stand to prove your case for the world to see. It’s hard enough to be sick without having to fight the nonsense that is happening in other’s minds. Pick your battles carefully and conserve your energy for the people and things in life that do matter.
7. Ask for help.
When I first came home from the hospital in 2014 after a botched surgery that almost killed me, I had no choice but to ask for help. I had to have help going to the bathroom, not just at home from my new husband, but at the hospital from total strangers. I wanted to die the first time it happened. I was horrified and in so much pain that I froze and couldn’t even help the nurse as she pulled down my pants for me. In my late 30s at the time, it was unfathomable to have someone I’d never met do something so personal and sacred for me.
Once home, my mother and husband had to take turns undressing and bathing me. I thought having two children would have cured me of modesty, but that was not true. My then teenage daughter learned to clean and dress the inside of my very large and open wound and got over seeing her mother exposed.
I carried my catheter around in a big purse the first time I left the house with it, trying to hide the tubing in bulky clothes. And then I dropped it and felt like I’d spilled my insides on the sidewalk. I’d also fallen a couple times, refusing to use the walker next to the bed. At the rate I was going, I was going to die of stubborness or learn to ask for help when I needed it. Luckily, I chose the latter.
In the end, I realized despite what I had lost, I was so fortunate to have the support I did. My husband is still my primary caregiver and has seen things no wife wants a husband to see, but he takes it like a champ and keeps on loving me. My mom doesn’t have to bathe me these days but still comes into to town to sit with me for a few days, when I can’t stand one more minute alone staring at the television. My daughter graduates in five months with her bachelors in nursing, her passion discovered at possibly the worst of my life. We all learned to lean on each other in the years since, but it’s not an easy lesson and leaves stains on your self-esteem. It wasn’t easy to get over myself and accept that I needed help, forgive myself my frailties, and learn to be human, because we all need somebody sometimes.
8. Life goes on.
This is a big one. At the end of the really bad days, the ones so bad I don’t mention them to my friends and family, that scary thought is there. I don’t want to live like this anymore.
I screamed at my husband once, after weeks of bed rest and meds that weren’t touching my level nine pain, that I wished I’d gotten a disease that killed me, because I wanted to die. His eyes watered like I’d slapped him. The silence hung heavy between us. I’d thought it plenty of times, but never said it aloud until that night. The weight of those words was staggering.
The thing is, I don’t really want to die. I just don’t want to live like this anymore, trapped in my broken body. I took a step back and thought about what I’d said and considered what he might have heard instead. He’d heard that I wanted to kill myself, but that wasn’t what I meant. I’m not suicidal. But living with a disease that chips away at you physically, mentally, emotionally every single day, without a cure, without hope, is like a slow death by a thousand tiny paper cuts that bleed and hurt, but will take a long time to kill you.
Once I figured out dying wasn’t an option, I had to learn to live with my condition. When you accept that life will go on, you can then learn to look for the silver linings in each and every rain cloud. I lost my job, but now my full-time job is taking care of me. I have pain and limitations, but now I find joy in smaller things I never stopped to notice before. I have a disability, but I am learning to turn that disability in a new ability to reach out to others like me, to ensure none of us feel as alone as we did before, and maybe teach a few others the truth about living with an invisible illness.
This is a just a sampling of what I’ve learned. There are many more truths I uncover each day living with a chronic illness. The final truth is that I’m still learning about myself and about my disease, how to move forward, how to survive, how to follow my own advice. I’m still living, even if not how I want to – and I’m still discovering how to navigate the life I do have while grieving the one I lost.