What is it like living with rheumatoid arthritis at 33, after being diagnosed at age 29? There are so many ways to answer this question, but let’s start with this: I never saw it coming. I was a new mother — actually, a newly single mother — of a little boy when I got diagnosed with RA. Only older adults got arthritis, right?
Wrong. So wrong. When my diagnosis of RA hit, I was having so much fatigue and joint pain I couldn’t even buckle my son into his car seat or do daily chores. I was going through bad postpartum depression that I’m sure was making my RA worse and vice versa. Before I knew it, my ability to work full time as an esthetician slipped out of my progressively arthritic hands.
I became a full-fledged member of a club I didn’t know existed and didn’t want to join: the world of people living with chronic inflammatory illness. This world means adjusting to medication after medication. It involves figuring out if what you feel is a side effect of your treatment versus a symptom of your disease or a comorbidity that comes with it. It includes hours in waiting rooms and appointments with health care professionals and specialists I’d never heard of before. It means not knowing how to explain RA to people who don’t have it and know nothing about it.
The goal in all of this, of course, is to try to find some relief and regain a normal life somehow. But I’ve now realized that there is no such thing as normal.
What Does It Feel Like to Live with RA?
The best description I’ve come up with is that living with RA is like running a marathon while you have the flu and are also experiencing an existential crisis.
The main symptoms of rheumatoid arthritis include:
- Chronic joint pain with or without swelling
- Chronic fatigue
- Malaise, fever, loss of appetite
- Infections, as RA itself and many medications used to treat RA can impair the immune system
- Cognitive dysfunction (brain fog)
- Depression and anxiety
How do I treat these symptoms? Well, acetaminophen is not going to do anything for my pain or fatigue. Treating RA requires pretty complicated medications and side effects that go along with them. The goal of these medications is to quiet your immune system so it no longer attacks the joints. After trying a number of different medications and combinations of medications, I now take a biologic infusion, which I get through an IV once a month. Afterward I become an arthritic ball of confusion so I might need a day or two to shrug off the “infusion hangover.” My drugs start to wear off about a week before my next infusion date, and this is when my RA symptoms heighten the most for the month or during my menstrual cycle.
So how does this exactly impact someone’s everyday life? Here’s a sense of what it’s like to wake up and go to sleep every day with rheumatoid arthritis:
Mornings with Rheumatoid Arthritis
Rheumatoid arthritis patients wake up stiff and achy in the morning. Sleeping too deeply without movement increases pain and stiffness. And even though our fatigue makes us beg for more sleep, no matter how much sleep we get, we do not wake up feeling refreshed. I have a hard time sleeping past 5 or 6 AM without pain and stiffness waking me up. It doesn’t matter how tired I am; I can’t sleep in anymore.
Every day I am a ball of nerves riddled with anxiety about whether or not I can physically handle everything I need to do. Depression nags away at me with distant mournful memories of what I once could handle. I am always anxious about how those around me will respond to my limitations, needs, and help I require because of living with an invisible illness.
I usually spend the first few hours of the day sipping coffee, reading, writing, and trying to shake off the flu-like feeling RA gives me. It never really goes away, but it does “loosen” a little as the day goes on. I’ve oddly gotten used to it. As a single mother, getting my 6-year-old son ready for school can be a hectic mess. But at the same time, being his mom is what keeps me moving forward each morning.
Self-Care in the Morning
To get going in the morning, a hot shower and gentle stretching help relieve some stiffness on the days I cannot exercise. I often struggle to eat breakfast because the thought of food turns my stomach. I usually have a light breakfast of toast and hummus or a smoothie — whatever I can stomach — for energy. I force myself to make healthy diet choices all day long because it may help with the inflammation my RA causes. When I’m feeling well enough, I enjoy the gym for cardio followed by the sauna. I feel the best after that and can manage the rest of the day better.
Afternoons with Rheumatoid Arthritis
Some days I need a nap or a moment of rest in the afternoon, especially if I struggled to sleep the night before or did too much at some point. But naps are tricky; they can often be a double-edged sword. If I am not active enough during the day, I may either pay for it — or benefit from it. This causes great anxiety when I have a lot to tackle in a day. How much exercise do I need? How much rest do I need? Too much of each can have a major negative impact on my day or a few days later.
I have to be careful not to over-schedule. A too-busy day will often result in an increase in pain during the evening and require a rest day or two after. (By rest days I mean hardly doing anything; those are days when even a shower seems impossible or I need to rest after taking one.) A busy day would be a day when I have more than two or three things to do, such as housecleaning, a playdate for my son, a doctor visit, running an errand, plans with a friend or a date. A busy day for me might be a regular day, or even a light day, for someone otherwise healthy. The simplest of tasks or stress can feel like climbing a mountain and wipe me out.
Self-Care in the Afternoon
After my morning workout and some rest, I do more stretches. Some days I add strength training exercises to nourish my muscles. Breaking up exercise with moments of rest in between has helped me better handle working out and my overall daily routine. Attempting to do everything all at once is too much. This keeps me moving throughout the day as well, which helps relieve the stiffness, pain, and fatigue I get if I rest too long.
Evenings with Rheumatoid Arthritis
I get very tired at night because of my compromised immune system. It’s almost as if my body starts to shut down after realizing that we made it through another day: “I’m done now, thanks!” The more intense my flares, the earlier I need to go to bed. As I get closer to my next infusion date, which means my medication is starting to wear off, I find myself needing to go to bed earlier. Having an infection, an action-packed day, or feeling stress are also culprits for an early crash. I basically have the same bedtime as my young child.
Self-Care in the Evening
I try to make a ritual out of my evening routine: washing my face, brushing my teeth, taking any medication I need. But there are many nights where fatigue wins and I can’t be bothered to do any of this. It’s lights outs before I expect it or can control it, my body too heavy to move from the invisible blanket of fatigue. Before I started to exercise regularly I struggled to stay awake to put my son to bed. Since I started taking my biologic, viewing food as medicine, and exercising regularly, I can handle most evenings much better. I could never be more grateful for this.
The Roller Coaster of RA: Not Every Day Is the Same
Rheumatoid arthritis is an unpredictable disease to live with. While I can now manage my energy and fatigue better after four-plus years of living with this mysterious disease, I still have many moments where it catches me off-guard. Some days the fatigue hits too hard for me to function and I have to crash and often cancel all plans. I am not a flake; my disease is.
Living with RA takes a lot of planning. I’m a big fan of writing lists to manage my day-to-day life, while accepting that sometimes no matter how prepared I feel each day, sometimes rest wins. I cannot beat myself up over what I can’t accomplish.
I’m still learning to listen to my body’s whispers of what it truly needs. For me, it’s often not joint pain that is the most difficult symptom of RA to live with, but fatigue and the emotional toll the disease has on my life. Some days dealing with depression and anxiety from RA seem like my biggest challenge. RA is so much more than just joint pain.
But this is my new normal. As much as I can mourn my old life I have to keep moving forward and accept my what it means to manage daily life with autoimmune arthritis. I want to live, not just survive.