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This article originally appeared in the November 2022 edition of Inside Equal Access and was also published in August 2022 in .
By: Courtney McLeod
Something no one tells you when you’re diagnosed with a chronic illness is that you will be lonely. Lonely in your pain, in your thoughts, in your emotions; everything.
At first, everyone is caring and attentive. You’re grieving your old life and dealing with intense emotions because your entire life has just flipped on its head. Those around you ask how they can help or hope that you “feel better soon.” But then the weeks go by, then the months, and eventually the years. Your grief is still there, and your emotions still flare because you’re reminded that you can’t do that task you were able to do your entire life.
You still experience these things, but the people that were there before are no longer around. They aren’t there to ask if you need help or offer a caring “feel better soon.” You no longer can do all the things you used to. You cancel a lot because your health is unpredictable, so you stop getting invited to things. You don’t remember things as easily, so people stop telling you important things. You just don’t seem like you’re who you used to be. And you might have one or two people in your life that are there for it all, but you wonder if they too will get tired of being with you, the disabled or ill person. So, the loneliness sets in.
For me, talking about my illness and my experience is one of my biggest coping strategies. I also go to different types of therapies and take medications. But there are times when the doctor’s offices and daily medications are just too much and too tiring. There are times when I just don’t want to do those things anymore and I curse my own body for not working the way it used to. It’s especially in those moments that I do want to talk about it. I want to complain, and I feel like I deserve the right because I deal with this crap every day. Yes, there are times when I don’t want to complain, and I know that people don’t want to hear me complain. There are times when I just want to tell someone “I have been experiencing X. I have X doctor’s appointments this week” or to even tell someone “I’m experimenting with X therapy right now” and that person follows up later to see how it went. I want someone to care. I want to feel like someone cares. I want to not feel so lonely in my battle.
I’ve stopped talking about my illness and my plethora of doctor’s appointments because I don’t feel like people care. I can tell people in my life are tired of hearing about it. I can sense in the replies that they are annoyed that once again, I am discussing my chronic illness. So, I just stopped talking. I don’t have the “normal” life experiences a 26-year-old female has. I don’t have the energy to go out and do things my peers do. So, I feel like I have nothing to contribute to the conversations.
People talk about their families, their jobs, their dramas, and their traumas. I can listen, and I do. And then I just don’t say anything because it would just be me talking about my chronic illness once again. I can talk to someone and then go months without because when they ask, “What’s new with you?” my answer is always going to be nothing besides work and doctor’s appointments. I can see that is tiring for someone to hear, but it’s also really tiring to be living it. If you sit across from someone who is chronically ill and think “Oh my god, I’m tired of hearing this,” you also need to think about how the chronically ill person feels. Being chronically ill doesn’t just end. Your friend or family member or coworker wakes up every day living life as a chronically ill person.
I appreciate when people tell me they hope I feel better, I do. But sometimes, it’s hard to hear because there is no “getting better” when you’re chronically ill. There’s no get-well card written for people who are chronically ill. But I can appreciate that someone wants me to be better than I am in that moment. When speaking to others with chronic illnesses, I try to say things like “I hope your bad days end soon,” or “I hope you find relief soon.” Sometimes, saying “I hope there are more good days in your future” works, too.
There are times when I just want to tell someone “I have been experiencing X. I have X doctor’s appointments this week”, and that person follows up later to see how it went. I want someone to care. I want to not feel so lonely in my battle.
I look at my husband and I can fully recognize the toll it can take to have a loved one with a chronic illness and/or disability. I can see the physical and emotional toll my bad pain days take on him. I see the things he does for me and think about the things he will need to do for me even once there are children in the mixture. I think about how he will deal with this for the rest of his life with me.
But I also think about how he chooses me every day. He goes to as many appointments as he can. He asks questions and takes notes in his phone. He does research on things he doesn’t understand. And for all those things, I am lucky. There are so many other people just like me who have a spouse or partner that leave them because it is “too hard” to see their loved one in pain over and over. It’s hard to watch your spouse writhe in pain, knowing there is nothing you can do to help them or take their pain away.
I know that people don’t want to hear me complain. There are times when I just want to tell someone “I have been experiencing X, or to even tell someone “I’m experimenting with X therapy right now” and that person follows up later to see how it went. I want someone to care. I want to feel like someone cares. I want to not feel so lonely in my battle.
I’ve been told by people in my life and doctors that my illness is not real. I’ve been gaslit by medical professionals and people in my inner circle into thinking these things are all in my head or made up. That type of thinking is so dangerous, for all parties involved. It leads to mental distress and can cause someone to be misdiagnosed and/or mistreated. At the end of the day, my pain is very real. My other symptoms are very real. The only person that knows what it truly feels like to wake up every day in this body, is me.
Those same people have also told me that I make my illness my entire identity or my life. Why is that such a bad thing? Why is having being chronically ill and/or disabled a large part of my identity so bad? My chronic illness dictates so much of my life: how I move, the clothes I wear, the activities I can do, the food I can eat, medications I can take, how much I can remember, how much physical activity I can do at one time, or what position I can sit in.
Nearly every aspect of my life is dictated and controlled by my illness. Nearly everything I do, I have learned to adapt in some way to make my life easier or to not put myself in a flare. So, yes, my illness is a large part of my identity, and it is a major part of my life. My identity is made up of a few major things: being chronically ill, a wife, a Ravenclaw, a Corgi lover, a musician, a gamer, and an artist. Those are all major things about me; each a different percentage of who Courtney McLeod is.
I can struggle with my illness and be grateful for what it has given me. I can help bring awareness to my illness and ableist ideas in society and still struggle with the emotions caused by my illness. I am allowed to hate my chronic illness but also have it be a strong component of my identity. I can be disabled and still be a friend, wife, and coworker. I am still the same person I was before I was diagnosed. Yes, things about my being are different (looking at you, fibro fog) but I didn’t go to sleep and wake up a completely different person. I still laugh at bad jokes, enjoy quality time with my loved ones, and show my love in the same ways I always have. Sometimes, I think I forget that nearly as much as others in my life do.