- Chronic illness starts with physical pain but the roller coaster of emotions that accompanies it (or any serious illness) is a journey all its own.
- Onset, diagnosis, and beyond are often wrought with frustration, fear, anxiety, and grief — with positive emotions like hope and relief sprinkled in.
- When you’re dealing with a physical health problem, there needs to be a plan of care for your mental health in addition to the plan of care for your physical health.
- A mental health professional will be able to provide a treatment plan catered to your unique situation and needs, but finding self-care activities that you enjoy and that work for your condition is important.
- A few self-care activities that might prove beneficial include low-intensity exercise, spending time outside, talking to loved ones, camping, and journaling.
- For those of you who don’t have a physical health condition yourself but someone you love does, simply be there — listen to your loved one’s needs, and be as helpful and supportive as you can during this difficult journey.
I’ve been in survival mode for the past 6 months.
It started with a swollen knee, regret that I ever played soccer, and the fear of possibly undergoing my first-ever surgery — but ultimately, the promise of an end to a bizarre chapter of my life. It quickly turned into full-body joint pain, several tentative diagnoses, many doctor’s appointments with multiple specialists, and a lifelong journey.
That’s right, I’m talking about the onset and diagnosis of a chronic illness. It started as physical pain, but it quickly turned into a mental health problem (or many mental health problems). The roller coaster of emotions that accompanies chronic illness or any serious illness for that matter is a journey all its own — one that I’ll detail for those of you who do and don’t have one yourself.
If you fall into the former group, my hope is that sharing my personal experience with the onset and diagnosis of a chronic illness will help you navigate your own journey. If you fall into the latter group, my hope is that you’ll better understand the mental and emotional toll that this experience can take on your friend, your family member, your coworker… as well as how you might be able to help them during this difficult time.
Spoiler: Your loved one is juggling anxiety, fear, and frustration; physical pain; doctor’s appointments; research; treatment. Plus, all of the other things that us humans have to concern ourselves with — work, family, friends, chores. And just keep on piling.
Onset and Diagnosis — AKA Pain, Fear, Relief, Frustration, Repeat
Here’s how the onset and diagnosis of my chronic illness unfolded.
One Saturday morning in September, I looked down in the shower and noticed that my right knee was three times bigger than my left knee. Huh, that’s odd, I thought to myself.
My right knee had actually been hurting for several weeks at this point. It was only slight pain that caused me to walk with a small but annoying limp. So, I ignored it, assuming it would resolve itself (as my ailments always had at this point in my life) — chalking it up to too much walking or a particularly rough play with my golden retriever puppy Summer.
But now it was swollen, and now I was concerned. Fortunately, many of my friends are nurses! I quickly sent a picture to our group chat, accompanied by: “My knee has been hurting for a month or so and I noticed this morning it’s really swollen. No idea what could’ve caused it. What should I do?”
Ice it and get in to see an orthopedic doctor ASAP, they said. Fortunately, my boyfriend Andrew was actively seeing an orthopedic doctor for his broken wrist — this saved me the step of finding a reputable orthopedic doctor. I scheduled an appointment for the following week.
The first tentative diagnosis I received was a torn ACL. “It could be from a past injury,” the doctor explained. Memories from soccer flooded my mind. “I did hurt one of my knees in a soccer game back in high school, but I never got it checked out,” I explained. He nodded confidently, “That’ll do it,” and ordered an MRI.
Two weeks passed. My knee swelling and pain gradually worsened. I finally had my MRI. Another week passed. I returned to the orthopedic doctor to discuss the results.
The MRI debunked the torn ACL theory, and I received my second tentative diagnosis: Lyme disease. “In a young, healthy person like you, Lyme is the most likely here.” Confused, I thought back on Andrew’s experience with Lyme. Pounding headache. Bullseye rash.
“Lyme can cause a swollen, painful knee?” I asked. “Oh yeah,” the doctor responded. “I’ve had it three times now, and one of those times I woke up paralyzed. I couldn’t move any of my joints.” Wow. Well, I do go camping a lot, I reasoned. And I’ve been finding a lot of ticks on Summer lately. Plenty of opportunities to get bitten by a tick. Sold. Once my bloodwork came back, showing I had Lyme, I could get the proper medication and move on with my life.
I got my blood drawn the next day and waited anxiously for my results. Meanwhile, I continued to endure the swelling and pain that now afflicted both knees. I also started googling about the progression of Lyme disease, afraid that it was worsening. Finally, a week later, my doctor received my results and I returned yet again to discuss them.
After my bloodwork disproved the Lyme hypothesis, I was back to square one. It was the end of the road for my orthopedic doctor. He was tapping out. “Well, I’m sorry you’re dealing with this. You’ll need to schedule an appointment with a rheumatologist. I’m going to give you a business card for a really great practice, the doctors over there will be able to help you out.” He looked at me a final time with sad eyes before leaving the room.
And that was that. Several doctor’s appointments and a thousand dollars later, I had more questions than answers. Frustrated, I called the rheumatologist that my doctor recommended to me and scheduled an appointment.
A month and a half passed. They (and every other rheumatologist in the state of Virginia) couldn’t get me in any sooner. By this point, my knees, right wrist, right thumb, right elbow, and neck hurt. I couldn’t move them much without experiencing moderate to severe pain.
Finally, I had my appointment. After I chronicled the previous several months to my new doctor and handed over the MRI as well as the bloodwork, I received my third tentative diagnosis: a chronic inflammatory autoimmune disorder.
The bloodwork that disproved the Lyme hypothesis also revealed a blood marker that says I’m more susceptible to autoimmune disorders, my rheumatologist explained. She ordered more bloodwork to rule out other causes and confirm her suspicions.
I went back to the lab for my second round of bloodwork. Two weeks, Christmas, and New Year’s passed by. It was finally time to see my rheumatologist again. At this point, my knees, right wrist, right thumb, right elbow, neck, jaw, and ankles hurt.
I spent as much time as I possibly could laying on my couch with my legs and arms stretched out. Bending any part of my body was brutal. Getting up off the couch was a major feat. Fortunately, my left arm still worked okay, so I was able (just barely) to push myself up to a standing position again. Then, I could shuffle to where I needed to go around the house. But never too quickly and never without discomfort.
For this next appointment, we met virtually because her daughter was home sick. I clicked the link that was emailed to me and waited for my rheumatologist to join via video. She popped on, asked how I was feeling, and then reviewed my latest bloodwork with me.
And just like that, I received a diagnosis (no “tentative” this time) — seronegative spondyloarthropathy. In other words, I have a joint disorder that causes inflammatory joint pain. You might be familiar with psoriatic arthritis or ankylosing spondylitis (AS). These are both seronegative spondyloarthropathies. While the doctor isn’t sure which specific disorder I have, it doesn’t really matter. The cause of my pain was made clear and thus the course for treatment. I finally had an explanation and a plan of care.
My rheumatologist prescribed short-term and long-term medication. The short-term was a steroid, which I started the next day. Within hours of taking it, I felt better. Within a couple of days, I felt almost normal — I’d completely forgotten what “normal” felt like. My normal was pain. This normal (that most people experience and that I once experienced) was truly remarkable.
The long-term medication was a biologic in the form of injections. This terrified me. I have to stick myself with a needle? This is my life now? But I talked myself off the ledge — told myself that poking myself with a needle every couple of weeks was better than constant pain every single day. And then I went back to the rheumatologist’s office and with Andrew’s literal and figurative help, my first injection was done. I didn’t even feel it. I could do this. I left feeling on top of the world.
Breaking Down the Emotional Roller Coaster of Chronic Illness
To summarize the above, the onset and diagnosis of a new, mysterious illness is an emotional roller coaster. An emotional roller coaster that can leave you in a fragile mental state. While it’d be difficult to describe every emotion that I experienced, here were the most apparent:
Fear: One of the most overwhelming and abundant emotions on the roller coaster. I became fearful when my friends expressed concern and told me to see a doctor — this was the moment I realized I might have a serious problem on my hands. I was scared when the orthopedic doctor told me that I might have a torn ACL — this would mean surgery, which I’d never had before. I was scared when he told me it might be Lyme disease — this could have many short- and long-term effects on my health. I was scared when the rheumatologist told me I had an autoimmune disorder — I’d never suffered a serious or long-term illness or injury before. I was scared when she told me I’d have to give myself injections — I hate needles. I was scared the medication wouldn’t work or would take too long to work. I am scared that the pain will come back when my steroid is finished. That I’ll have to endure it again until the injections kick in. I am scared of a lot of things, still.
Hope: In juxtaposition with my fear was hope. I was hopeful when the doctor told me I might have a torn ACL and a few weeks later when he told me it was likely Lyme — a diagnosis, treatment, an end to this mess was in sight. I was hopeful when he told me a rheumatologist would be able to help. I was hopeful when I met said rheumatologist and she shared her own suspicions. I was hopeful when she prescribed my medication, after I took that first pill, after Andrew did my first injection.
Frustration: This emotion was in ample supply, too. I was frustrated after every wrong tentative diagnosis. I was frustrated with the bills that were quickly piling up. I was frustrated with the traffic I had to sit in to get to the doctor’s appointments that I was losing faith in. I was frustrated that I couldn’t move around like a normal human being. I was frustrated (and jealous) that Andrew could. I was frustrated that nobody around me understood what it felt like to be me. I was frustrated that I couldn’t make them understand.
Love: I don’t know if you can consider love an emotion, but I’m going to. I felt love every time Andrew got up to turn up the heat, get me water, take out Summer, or run me a bath, so that I didn’t have to. I felt love every time my family, his family, our friends asked me how I was feeling. I felt love every time someone stood up so that I could sit down. I felt love when Andrew’s mom asked if she could come to my doctor’s appointment “because I deserved to be advocated for.” I felt love when Andrew agreed to and learned how to administer my injections.
Anxiety: In my life, anxiety is ever-present. But naturally, it worsened over the course of this journey. I was anxious before every doctor’s appointment. I was anxious every time I was awaiting my MRI or blood work results. I was anxious every time I googled my symptoms and self-diagnosed. I was anxious every morning, as I mentally prepared myself for the painful shimmy out of bed. I was anxious every time our friends wanted to hang out with us — I’d have to explain why I didn’t feel up for it and miss out on another social gathering. I was anxious on day 5 of the steroid (darn you, side effects).
Grief: I also experienced grief. I grieved normal — everything, even putting on shoes or sitting at my desk, became painful, uncomfortable, or difficult. I grieved going on long jogs, my favorite form of exercise. I grieved the future that I had envisioned for myself — I was questioning whether I’d be able to have kids one day like I hoped. And I was questioning whether my predicament was fair to Andrew — I didn’t want to hold him back. Plus, he didn’t deserve to be with someone as disgruntled as me.
Relief: Finally, relief. I felt many false senses of relief after my tentative diagnoses were made but then proven wrong. But I felt truly relieved when my rheumatologist said, “We know you have a seronegative spondyloarthropathy.” I felt relieved when she told me that I’d feel better quickly after starting the steroid and again when that proved to be the case. I felt relieved when Andrew did my first injection and I didn’t even feel the needle enter my skin. I felt relieved when I could get out of bed without experiencing pain. I felt relieved when I could walk down my steps without holding onto the railings. I felt relieved when I could get on the floor and play with Summer. I felt relieved when I realized I wouldn’t be in pain forever — that I wasn’t completely doomed like my anxiety tried to convince me.
The thing about the emotional roller coaster that accompanies a chronic illness is that it never truly ends. Right now, I feel relieved. But fear is just around the corner. And so are the other emotions, depending on the status of my chronic illness and my pain management.
Taking Care of Your Mental Health When You Have a Chronic Illness
Chronic illness and mental health go hand in hand. Or, they need to — mental health needs to be part of the discussion. While I was searching for answers, there wasn’t much I could do to remedy my physical health issues. I tried to eat anti-inflammatory foods and go on low-intensity walks, per the guidance of Google, but that’s about all I was good for. My mental health was a different story. I had more control here.
Another emotion I experienced that I haven’t yet discussed is anger. I’ve spent the last five years researching, learning, and writing about mental health problems. I know what to do (in theory) if I feel anxious or depressed. I know what to do to manage my stress levels. I know when it’s time to talk to a professional. I know when psychiatric medication might be a good treatment option. But this — this physical ailment came out of left field, and I had no idea what to do about it. I was so incredibly angry, but I couldn’t help but laugh at the irony.
I didn’t realize this at the time, but half the battle of a physical condition is the mental health impact.
The fear, frustration, anxiety, and grief that I experienced over the course of a few months needed to be addressed and managed. When you’re dealing with a physical health problem, whether it’s a chronic illness or another kind of illness, there needs to be a plan of care for your mental health in addition to the plan of care for your physical health.
Of course, nothing beats talking to a mental health professional. They’ll be able to provide a treatment plan catered to your unique situation and needs. But, here’s how I took care of my mental health throughout the onset and diagnosis of my chronic illness:
- I journaled. This is a tried-and-true technique of mine. I’ve kept a journal since I was in middle school — vowing to write daily or weekly, depending on the chapter of life. For this chapter, I vowed to journal as often as I needed to. I journaled about how I felt (physically, mentally, and emotionally) on the given day and what my symptoms were. I also journaled about the latest happenings at my doctor’s appointments, any other important news, and what I was grateful for.
- I wrote poetry. I’ve had a few poetry stints — unsurprisingly, I felt inspired to write a poem about my physical predicament. “Enjoy rolling out of bed, sloppily shaking the tired from your limbs,” I advised the reader. “Enjoy strolling into the kitchen with ease. Focused solely on getting a hot, cozy cup of coffee…”
- I took baths. Before my body started hurting, baths were on the list of self-care items that I didn’t quite believe in. They never made me feel that relaxed or rejuvenated — but then my body started hurting. And sinking into a warm bubble bath provided instant relief, which meant taking baths became one of my favorite self-care activities.
- I went on walks. I know what you’re thinking: “I thought you were in pain? I thought you couldn’t move well?” This is all true. But going on those low-intensity walks actually made me feel better. The light physical activity loosened up my joints and relieved the stiffness, characteristic of my condition. So, I went (and still go) on at least three 20-30 minute walks a day, much to Summer’s delight. Which benefited my mental health in addition to my physical health, as exercise does.
- I cooked new recipes. My brother bought me a new cookbook (“The Date Night Cookbook,” for those interested). I tried new recipes — like a cereal cookie recipe for Christmas — from this cookbook as well as HelloFresh, which I treat myself to once a month or so. This brought my mental state and my stomach joy.
- I read thrillers. Like I said earlier, I spent as much time as possible laying on my couch. Which meant I spend a lot of time reading my favorite genre of book, thrillers. My friends gave me a couple they knew I’d love and I also picked a new thriller every month via Book of the Month (BOTM).
- I talked to loved ones. I’m not much for talking to people about my problems. I’ve always been the person that my friends and family members talk to. So this was a tricky one, but when I managed to open up about my condition, I always felt better afterward. I particularly enjoyed talking to one of my friends who was dealing with her own physical ailments, so she understood and related to everything I was going through.
- I booked Airbnbs. I don’t know if you can call going to Airbnbs a pastime, but if you can, it’s my favorite one. Andrew and I stayed at one back in November (just before my physical pain spread throughout my body) — it was fit with a hot tub, arcade game, a screened-in porch, and beautiful kitchen. Getting away with him and Summer refilled my cup.
- I binge-watched Netflix. Again, I spent a lot of time on the couch… and I didn’t only read books. I binge-watched a lot of Netflix too, much to Andrew’s delight. We finally gave in and watched “Yellowstone,” which we quickly became addicted to. It only took us several weeks to binge all four seasons. This served as quality time for Andrew and I — we always looked forward to watching an episode together after the workday.
- I redecorated. Redecorating and rearranging furniture is and always has been therapeutic for me. It can change the whole feel of a room and bring so much joy. So, with the little strength that I had, I spent a lot of weekends moving around furniture and swapping out decor. The end goal always to create a happier and/or cozier space.
- I bought new rugs. Sometimes, my current furniture and decor just don’t do! Once I’ve rearranged enough, it’s time to buy something new. (Like I said — a few poetry stints.) Recently, I bought a new rug for my office. I ended up putting it in the dining room, bringing the dining room rug into the office, and voila — both rooms are now much happier and cozier. And the little dial on my mental health tinkered up.
- I went camping. Before it became unbearably cold, we camped with our friends and family. Getting outside, socializing, sleeping in a rooftop tent under the stars. It all gave my mental health a boost.
- I cleaned. Cleaning is incredibly therapeutic for me. It’s similar to redecorating, I suppose. As Danny Tanner (and the late Bob Saget) said, “A clean room is a happy room.”
- I lit candles. Lighting a candle provides a sense of contentment. Especially after cleaning or redecorating. It’s like the finishing touch. I’ve been buying and lighting a lot of candles lately. A few even serve as bookends at the moment.
- I cried. Yes, I deem crying a form of self-care. Most of us don’t like to cry, but once we do it, we wish we’d done it sooner. I cried about once a week. And usually, it was because I’d let all of my sad, angry emotions boil over. But alas, I always felt like a new person when it was all said and done.
Self-care has to be individualized to be effective. The items on the list above might work for you — and I hope they do — but they might not. Or, even if they do work for you, there might be another form of self-care that benefits you greatly. I encourage you to find the right self-care activities, build them into a routine, and then remain loyal to that routine. This is your plan of care for your mental health, until or unless you talk to a counselor who is an expert on creating such a plan.
Supporting a Loved One with a Chronic Illness
And finally, for those of you who don’t have a chronic illness, but someone you love does: Just be there. Be helpful and supportive. Take out the dog if they ask you to (bonus points if you do it without them asking). Run them a hot bath and light a candle. Cover them with their favorite blanket and turn on your latest Netflix binge.
Tell them it’s okay when they don’t feel up to hanging out with friends. Accept their sudden need to get away and go with them (your Airbnb awaits). Ask them how they’re feeling. Ask what you can do when they say they aren’t feeling well. And don’t take offense when they get frustrated or angry for no apparent reason.
Share their frustration for the doctor’s lack of answers, but throw in a healthy dose of optimism. Go with them to their appointments if they ask you to. Heck, stick them with a needle if they ask you to (only if their medication requires it, obviously).
That’s all. Be there through this scary, frustrating, anxiety-ridden journey. Listen to them. Comfort them. Support them. Love them.