When the dust settled after my rheumatoid arthritis diagnosis, my friends changed right along with my ability to say I was a healthy young woman.
Plans with friends used to consist of attending concerts, tasting craft beers, going out dancing, hosting dinner parties, record collecting, and living fairly care-free when I could handle doing more than one event in a day.
Now the big plans in my life are centered around doctor appointments, adjusting my medication regimen, getting diagnosed with new chronic illnesses, and questioning how I can tackle what I need to do to just get by in my everyday life.
It was extra hard for me — and especially others — to understand because my rheumatoid arthritis is invisible. You wouldn’t know I was sick just by looking at me. I look young and healthy. I have a young son. I have tattoos. That “arthritis only affects ‘old people’” is one of the many misconceptions about arthritis I want so desperately to dispel.
There were some people who didn’t understand the grief process I went through at first and were quick to ditch me when I was angry. Some who thought I was always complaining when pain made me vocal. Some couldn’t cope with the seriousness of my disease.
I’ve heard people say “not my business, not my problem” when RA left my life in pieces, yet I was still invited to their wedding. Sometimes friendships are for show and lack any real substance. Living with chronic illness will quickly tell you a lot about other people. Unfortunately, it will show you sides of them you didn’t see coming.
The people who were surprised that rheumatoid arthritis was much more than joint pain — and had a profound effect on my mental health — were often the first to fall out of my life.
I became angry and challenged people to leave. I had already lost enough. Depression, anxiety, and side effects from medications made my emotions uncontrollable. I had to go through the grief process.
Many of the people who stuck by me have gone through something like this before or have had someone close them get sick. They weren’t afraid to keep being my friend. However, I admit I’ve even had skeptical thoughts about these true friends during my darker moments. My diagnosis made me question the meaning of non-judgment, compassion, and understanding. I’m so grateful these people have stuck by me, even when I might have doubted them.
The more I meet and speak with others who’ve gone through a severe chronic illness diagnosis I hear how they too have lost people close to them because of their illness, for various reasons. Maybe mine will sound familiar to you.
I’m frequently late
Sometimes — well most of the time — living with arthritis can make it really difficult to get going, whether in the morning, afternoon, or evening. Sometimes I need that extra little bit of coffee or I need to force myself into the gym to relieve some stiffness or I need a rest before taking on the day. My chronic illness and my day planner aren’t on the same routine.
Fatigue makes me go MIA
Sometimes I avoid emails, calls, and texts because they feel too overwhelming when fatigue makes it hard for me to communicate or function. Or I feel anxious about how much of my very limited energy communication will take when I am struggling to keep up in the first place. Don’t take offense if I seem like I am ignoring you. Sometimes I can’t take on more than what I am already trying to accomplish, even if at first I don’t realize it.
Pain can be overwhelming
Joint pain can be extremely debilitating along with unrelenting fatigue. I can seem short via text or emails when my joints are flaring up or I just can’t communicate like I want to through the pain. Maybe I won’t participate in something because any number of my joints feel like they are on fire. When it’s bad, pain can be hard to ignore.
I cancel plans a lot
Friends tend to stop inviting you out when you are always canceling, especially at the last minute. Chronic illness is bumpy and has a schedule of its own. I still want the invites, but please understand if I cancel, am indecisive about going, or I duck out early (sometimes without saying anything). I can’t physically handle long events.
I don’t drink anymore, at least not like I used to
I gave up drinking alcohol shortly after my diagnosis. There came a time when any alcohol at all made me feel worse and I did not want to mix it with my medications. I wanted to get healthier. When I gave up nights of going out drinking, I also said goodbye to a lot of my friends, some by choice; others I guess because I wasn’t as much “fun” anymore. It can be extremely frustrating when people try to get you to drink when you know it will make you sicker.
I am forgetful thanks to cognitive dysfunction
One time I forgot to pick up my friend’s daughter from school even though she asked me to do so 20 minutes earlier. I was flaring and it was heavily raining. Thankfully, her husband also has RA so she understood why that happened.
I like daytime plans, not nighttime plans
I get excited about daytime concerts or plans but I dread anything past 8 PM because I turn into an arthritic pumpkin. I also most certainly don’t like to go out when the weather is bad. I am on a fixed income so I can’t afford much nightlife anyway.
I’m always asking for something
If you are my friend, I might ask you to help me lift or carry something or drive me somewhere if the commute will be too much for me. This causes me a lot of guilt. Not everyone has been understanding or compassionate about my invisible disability and people have made hurtful comments. I never really know when those will come up. I really don’t like when people ask me why I need help. No one wants to keep explaining their limitations; they just want some support.
I can be moody
Anxiety, stress, hormones, pain, and fatigue can make me lash out in anger at the people I love the most. That’s when I say, “Come on Eileen, swallow that pride pill, apologize for being a moody jerk, and don’t let this illness get the better of you.” I need to focus on keeping communication open when life and disease get overwhelming.
Chronic Disease Makes You a Good Friend Too
I often wonder if I don’t have much else to talk about other than my illness. What do I offer do I offer in a friendship?
But I am still that friend who understands, listens, and is there when I can be. Friendships are not about quantity but quality. I know I try to be supportive, present, and fun in my best ability. I stick to trying to treat others the way I want to be treated: with kindness, compassion, and support.
Even though it’s not always easy for me to see it this way, the transformation my chronic illness forced me to undergo has made me a better person, closer to my friends, and more satisfied in my relationships. Most of my friends today are also facing a chronic illness, so we speak a certain language together only we can truly understand, through our shared lived experience.
I also know a lot about the medical system for when my friends do need a listening ear, with good weed and healthy snacks.
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