4 Challenges of Being an Introvert with Chronic Illness
Guest post by Kami Lingren
Navigating the changes that have come with a not-so-normal immune system have been, well, interesting. And throwing in my introverted personality? Now, that’s come with it’s own set of “fun”. Ahem, like every social sensitivity I’ve ever had, dialed up to 15 on a 1 to 10 scale. How polite of chronic illness, right?
Along with the adjustment to a new normal that we all experience as the chronically ill, there are a few things that have been more challenging for me than others.
RSVP, With Regrets.
Attending events with more than a handful of people is most definitely NOT on an introvert’s wishlist. Yet even with the anxiety and discomfort that would come from attending group gatherings or events before becoming chronically ill, I would still make an effort to go.
But after sickness hit it became incredibly difficult to make it to…just about anything. Lights? Sounds? Smells? They’re an added layer of “no thank you” to an already overwhelmed body when you’re an introvert with chronic illness.
It’s taken me time to be okay with saying “no” when it means protecting my health. (And I still have room to grow, FYI). So if the event falls close to an important doctor’s appointment or a visit from family or friends, than you’ll most likely be getting a decline from me. I am learning more about myself and my body’s limits, while also reminding myself “no” doesn’t have to mean “never”.
No doesn't have to mean never, it just means you can't right now. Share on X
Lonely, party of one?
Based on that last point alone, community can be tough to maintain, can’t it? Us introverts tend to crave the one-on-one connections rather than feeling lost in a room of strangers, sweating like a cold can of soda on a hot summer day.
Nuh-uh, no thanks.
But when you’re an introvert with chronically illness this sometimes means your ability to pursue those more intimate connections with friends get hijacked by something called ‘an inability to drive yourself’. Or ‘exist in rooms cleaned with chemicals’.
When I can handle a few hours outside of the house, I’ll escape with a safe person. Someone who is aware of my illnesses, knows of signs to watch for in case I need assistance or need to go home, and a person I’m comfortable with. And on other days, I’ve invited friends to come spend time on my couch. Netflix, tea and girl talk when I’m up for it can be just what the doctor ordered!
Fibromyalgia and Loneliness (a study)
Choose to spend time with friends who understand and can help. Share on XDoctor Drain
Doctor’s appointments were never fun for me, even before chronic illness. They meant small talk, sterile rooms and crowded waiting areas. Now getting into the doctor and making it through a visit feels like a marathon you haven’t trained for. Oh – and you have clouds for a brain for extra fun. “What was I just in the middle of saying…? Wait, what’s my name again?”
With heightened social anxiety, it’s been important for me to listen to those signals of distress and find ways I can support my body instead of adding further strain. I like to have Trevin with me on appointments, if possible, but if not it’s helped to at least have someone else with me or in the waiting room. When you’re diving into symptom lists and treatment plans, it can be exhausting on our systems and having that extra pair of listening ears can be helpful.
Dysfunctional Batteries
As an introvert with chronic illness, my batteries start to run down the longer I go without downtime or some time to myself. I need that space to recharge, reflect, and give my brain a rest. Since I became sick, my energy tank seems to have had an encounter with a machine gun.
Even a short conversation with someone I’m comfortable with leaves me feeling exhausted within minutes. A few steps can feel like a hike sometimes.
Since no one else can see that I’m struggling until an hour or two goes by (my droopy eyes are always the dead giveaway) it’s up to me to excuse myself or call it a night when it’s time. Or, if I have a visitor staying with us, I’ve also scheduled rest breaks throughout the day. My phone will sound an alarm with a message “rest break” or “detox session” and I’ll excuse myself to do either. It helps me do both as best I can: engage with someone for a bit and take care of myself.
It's up to me to say goodnight when my battery is drained. Share on X
Learning to be okay
Being an introvert doesn’t mean I “opt-out” of life. But it does mean my approach to living life in spite of chronic illness needs to look different than the outgoing extrovert. It has shaped struggles, but it’s also shaped boundaries which have been good and healthy for me to learn.
So to all you other introverts with chronic illness out there – I see you, navigating small talk and doctor’s visits like CHAMPS. And to those who used to be an extrovert and somehow illness transported you to Introvert Land: I’m not sure if “welcome” is the appropriate response, so I’ll just say “you’re invited to hang here with us.”
Can you relate to any of these challenges? How have you learned to function in your new norm of chronic illness?
Being an introvert with chronic illness doesn’t mean I “opt-out” of life. How have you learned to function in this new normal? #chronicillness #spoonielife Share on XKami Lingren is a writer, blogger, cloud-obsessed-legging-wearing wife and pup mama living in the beautiful valley of southern Oregon. 4 years ago she found herself disabled with multiple chronic illnesses and has since made it her mission to support other spoonies. Check out her blog where you can download a free resource to help you own your worth in spite of illness.
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tracy says
it can be awful for people with ibs that also have anxiety. You just cant do anything!
Jonathan Weiss says
To start, I wanted to tell you how much it meant to me to read your story, as I have felt very much alone in this battle. I am an L1 incomplete paraplegic who has been through so much. I’ve had multiple surgeries, since the original one, and horrific nerve pain which left me imobile for almost 2 years.
It took a year until they figured out that I had a tethered spinal cord, another few months to get all the billing arranged, and then surgery. I spent a month in the hospital post surgery, and then to my surprise, instead of sending me to Craig Hospital to do rehab, they tossed me to the wind so to speak. I went back to the Rocky Mountains where my home was, and in that small town, I couldn’t get the help that I needed. I ended up moving from Colorado to Michigan, to stay with a girlfriend that I had met who was a paramedic, and was encouraging me to attend a new facility called Mary freebed. However, she kept me sequestered in the house, a rundown mobile home where I could barely move around, and kept me away from other people. The depression set in. Well the depression had been there for a while, but it just got worse. I didn’t want to see anybody, I was embarrassed about how I looked, I was embarrassed about just being me. My disability leads to all kinds of complications, such as bathroom routines and energy issues, and it makes it hard for me to go out for a prolonged amount of time. I also have pain in my colon area that they’re trying to figure out, so sitting for prolonged periods of time really hurts.
Anyway, she ended up getting mad at me one day and threw me up against the dryer, choked me, and when I tried to get my phone out to call the police, she took it and threw it across the house. She then tossed me onto the floor and laughed and told me that I wasn’t going anywhere and that she was going to get her samurai sword to make sure I didn’t go anywhere. While she was in the back room rummaging through her stuff, I dragged myself with my elbows over to the phone, and called the police. When she heard I was on the phone with the dispatcher, she ran out the door and took off. The officer showed up, and she was arrested shortly thereafter. As it was not my house, I had no right to stay there, and no desire to stay there too. I didn’t know anyone in Michigan, so I called the American Legion, and they helped me get my stuff together in tubs and put it in my truck, along with my dog.
I drove to Grand Rapids, which is close to where Mary freebed Hospital is, and found a hotel. I called around, and was having difficulty getting help. As a paralyzed disabled veteran, you would think that there would be assistance out there, but when it comes to domestic violence, most of the resources and facilities are dedicated towards women.
So now, I’ve been in this hotel room since December, and I barely leave the room. Part of that I’m sure is the PTSD, and the social anxiety that has come from 3 years worth of being bedridden and house ridden. I have almost forgotten what it’s like to be socially interactive, and I’m afraid of people now.
I did take a step to try to help myself. Between my mom, who lives in California, and her friend, they were able to get a hold of an organization that would help me, for lack of better word, try to get my life and everything back to normal. I don’t know what normal is, or what it’s going to be, but right now I’ve lost muscle mass, I’ve gained weight, I’m depressed, I don’t want to be around people, I get tired a lot, and my pain is really bad. So she’s going to help get me into the doctors that I need to see, help coordinate a possible live-in arrangement with a group that helps spinal cord injury patients, kind of an all-inclusive place with physical therapy occupational therapy counseling and the like. I have high hopes, but it is very scary for me.
I’m in my later 40s, well educated, and used to run the IT department for major hospitals out of state. I would love to get back to work sometime, but this pain is overwhelming, and they have not yet been able to get it under control. I’ve had tests done but they don’t seem to be following up the way that they’re supposed to. I really need to be involved in a group setting that has access to doctors and specialists right there so that we’re not going months in between visits. I have anger too, I think associated with this kind of thing. I keep telling the doctors where the pain is what’s going on I’m hurting, and at the same time they’re trying to take me off of pain medicine, which I’d love to get off of, but I’m still hurting. I want them to take care of what’s causing the pain before they start yanking the medicines away from me. So I have a lot of animosity towards doctors and hospitals, because I really don’t think they’re set up to handle long-term or terminally ill or stuff like a spinal cord injury that is never going to go away. I’ve been called a pain medicine junkie, I’ve been called and told that my pain is psychosomatic, that it’s all in my head, I have fought with doctors to get treatment and been told that I don’t want the type of medication that I need, because they can’t figure out where the pain is coming from. So I don’t have a lot of faith in doctors and hospitals. On the other side, I really do need to get this fixed, as I don’t want to live the rest of my life in pain like this. So I guess I’m going to have to just hang in there and deal with it.
Through all of this, I don’t know anyone in Grand Rapids here. I don’t have any friends. I stay sequestered in a hotel room. I’m not strong enough to do a lot of activities, I have a truck that I can drive with and controls, but I don’t know where to go. I have a little dog, who keeps me company, but other than that, I shun physical contact. I would love to make friends and hang around people, but I’m also afraid that they’re not going to understand the constraints that my body puts on me. Some days I could spend 4 hours with someone and it would be just fine, but other days after 2 hours I’m done. I don’t know how they would handle that, or if they would even put up with that. And that’s not to mention the constant running to the handicap bathroom to take care of things, or towing around the bag of medicine. I just have fears.
I’ve got a great case worker I guess you could call her. she’s a private consultant that does this kind of thing and works with people like me to help get things in order and better. She works with the doctor’s offices, the housing groups the networks, the rehab facilities and even helping getting my laundry done, and setting up a dentist appointment which I’ve been needed to do. It’s not cheap, but if my life is going to turn around, if I’m going to live again, something had to change.
I really would love friends. I’d actually really like to meet other handicapped people like myself. I’d love to spend time around others that have the same worries and concerns and lifestyle that I do. I would love to be able to talk about the similar issues that we face, and share our stories together. Because life can push us to places where we feel so alone, even though I know there are others like me out there, I just don’t know how to get ahold of them, and I’m very shy when it comes to introducing myself now, because of what happened to me. I’m just hoping that maybe Mary freebed, or some other Network, might want to try setting something like that up. I think it might help us.
I’m so sorry to go on and on. If I wasn’t so emotional about this, I’m sure I could put this into a more coherent and readable structure, but right now, I’m talking from the heart, and it all just kind of comes out. I know, a mar ine talking from his heart is kind of a weird thing, but this jarhead has been through so much, and his old enough, to not let things like that get in the way.
So thank you very much, and if you ever want to reach out, I would love to hear from you or from others. The more we connect, the more we are not alone.
SEMPER FIDELIS
Cassie Creley says
Thank you Kami for articulating so well some of the extra challenges faced by introverts with chronic illness. It took me some time to realize this and the fact that I’ve become much more introverted than I used to be. It’s always helpful to know someone else understands!
Susan Griffiths says
I used to be a strong independent woman, confident in my own skin. Now I’m a weak, needy person, affected by everything you’ve talked about and more. It’s interesting that you’ve said you’re an introvert….I suppose I became more introverted, as my condition deteriorated.
Julie says
Hi Susan,
While this particular post is a guest post shared by Kami, I would definitely say I’m an introvert and have become moreso over the years. I think it’s important to understand the difference between introversion and being shy… the difference between an introvert and an extrovert is simply that extroverts gain energy by being around people while introverts need to be alone to recharge. This makes a lot of sense when you think of the hyper-sensitivity that comes with fibromyalgia that perhaps people with fibro were more introverted already or that we might become so (even if we were extroverts to start with). The way that all the various inputs (noise, sights, etc) affect us more it makes sense that we’d be able to take less interaction and need to be alone (in a nice quiet controlled environment) to recharge even more than a typical introvert might.