Tag Archives: social

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Guest Post from Lemons ‘n Lyme: What it Means to be Young and Chronically Ill

Hello my divas (and whatever the male equivalent is)! Today’s post is going to be something a little different than your used to– it’s my first guest post! I’m thrilled to be introducing you to Victoria from Lemons ‘n Lyme. You should remember her blog from last week’s Friday Favorites. Lemons ‘n Lyme is full of a lot of good things, from an awesome paleo, anti-inflammatory recipe page to a lot of strong and inspirational thoughts from a chronically ill but determined little lady. I’m honored to have her appear on Sedentary Superwoman, and I know you’ll all love what she has to say.

Victoria: Hello lovely followers of Summer’s blog! I am so excited to be guest posting today. I am going to be talking about the social and emotional effects of having a chronic illness as a young person. This is a topic that has been on my mind a lot lately, so Summer’s timing in asking me to guest post was perfect.
First, let me start by introducing myself. I run a blog called Lemons ‘N Lyme which chronicles my experiences and treatment with chronic Lyme disease. I LOVE to experiment in the kitchen and I use my blog as a place to share the Lyme-friendly recipes I develop. I could spend a lot of time talking about my blog and diet but since that isn’t the topic today, feel free to check out my blog for more details about my story and for lots of yummy recipes!

As I said, the impact of having a chronic illness as a young person has been weighing heavily on my mind lately. After over 12 years of symptoms and 3.5 years of treatment, why wouldn’t it? When you have a chronic illness, your experiences and views of the world differ from those who are “healthy.” It can be very isolating, both emotionally and socially. You can’t participate in all of the activities your friends and family are participating in. You can’t eat all the same food or even indulge in just one little taste without paying some serious consequences. It really does take a toll on you after awhile.
I’m sure by now we are all familiar with the acronym FOMO, fear of missing out. I’m beyond that now, it’s FOF (fear of a flair) for me if I do participate. Your younger years are supposed to be about adventures, late nights, travelling, trying new things, and copious amounts of fun. You’re trying to find yourself, learn, and do some dumb stuff along the way ;). My version of all of that is very different from the average 20-year olds. Taking a risk means going out to dinner or staying up past 10. Fun constitutes leaving my couch to get a Redbox instead of sticking to the same old Netflix. Anyway, you get the idea. Those with a chronic illness are in a very different world. It isn’t easy, but you have to redefine what fun, adventure, and living means.

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Before I was diagnosed and I had no clue what was wrong with me, I tried my hardest to push through and ignore my symptoms. After all, I had been told I was making them up, my tests were clear, and nothing was wrong with me. I felt incredibly alone and depressed. “This can’t be how everyone feels all the time? I feel miserable!” I thought. Nobody could justify my symptoms or even begin to understand how I felt. Once I was finally diagnosed, I felt a sense of relief to have an answer, to know I wasn’t making things up, and to know that people would understand because my symptoms had a name.

This wasn’t exactly the case, though. Naming my illness did not make it any easier for people to understand what I dealt with. Trying to explain my symptoms couldn’t even begin to convey how I actually felt. There weren’t words for how exhausted I was and for how much pain I was in.

I ended up doing intensive treatment that involved antibiotics, herbs, and supplements that had to be perfectly timed around each other and around food. Then, IV antibiotics were added. This meant hooking myself up to an IV twice a day, every day, for 7 months. I couldn’t spend the night out on the town or go camping for the weekend because I had to be home for IV’s that needed to be exactly 12 hours apart.
It is hard for others to fully comprehend how chronic disease can make you feel because they have never experienced a chronic illness themselves. This can leave you feeling completely isolated. My friends could go swimming, hiking, and dancing and I had to be home by 7 to prep for an IV before falling asleep at 9. I can’t just grab a beer with a friend after work if I wanted too. I can’t have the girls over to bake cookies and binge on ice cream while watching chick flicks for a night. I can’t pick up and leave for a weekend adventure because if I don’t stick to my treatment regimen, I’ll pay the consequences. Nothing can be last minute, every event must be planned out so I can rest in preparation, designate recovery days after, and pack all of my supplements, medications, and Victoria-approved food.
This can be very emotionally isolating, as well, since people can’t fully comprehend why you need to eat a certain way or forgo an invitation out. It is emotionally challenging to cope with constant symptoms, too. A break for just one day would be nice! The emotional toll that chronic illness has can make it very easy to fall into a rut that seems impossible to climb out of. But that is when it is important to develop coping mechanisms and learn to find joy in what you can do. This takes time and experience to figure out what can make you happy and how to deal with the bad days.

I’ve found art therapy to be very anxiety reducing and a way to detach from a bad day. I love to cook, so when I have the energy to develop recipes, I immerse myself in the kitchen. Even though I can’t always spend time with them, I have some amazing friends who I can call, either to vent to or to help get my mind off my current situation. I’ve also connected with many other chronic illness warriors out there and I’m able to email, text, and talk with them about our experiences. This makes me feel less alone and as if I’m missing out. We share similar inabilities to socialize like “normal” people, but can connect on that level and socialize with each other from the comfort of our own couches.

It’s a challenging journey we are travelling through every day and it’s even more challenging for those around us to understand our world. If you are a fellow spoonie, I’m sure you can relate to what I’ve written, and if you’re a friend or relative of someone who suffers from a chronic illness then I hope this post helps you understand, even just a little bit.

One of my best friends, Gabrielle, who is incredibly supportive of me and visits me often

Bird in the Bottom of the Cage– Relating to Healthy Friends When you’re Chronically Ill

“I would rather walk with a friend in the dark, than alone in the light.”
― Helen Keller

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A new friend of mine recently told me about how he cares for his pet birds. He said he has to weight the birds frequently to tell whether or not they’ve been ill. I asked why their behavior wouldn’t change before they lost weight, to which he responded “They’re social animals. We’re all social animals. It’s to their benefit to get up on the perch and dance and chirp for us, because they know their quality of life depends on our attention. So they get up on the perch and act healthy until they end up tired and thin, lying on the bottom of the cage.”

My friend told me this story because he thought it related to me and my illness. In chronic illness, social functioning becomes confusing. We’re embarrassed about our limitations, we feel left out a lot of the time. We want to be understood, but we don’t know how.

From an evolutionary perspective, we’re socially attractive based on physical qualities that would benefit a group or “pack,” and many of those qualities, like strength and stamina, are lost when we become sick. We can’t keep up physically, we don’t have as much energy as most people would, and we aren’t always the most witty or dazzling conversationalists. However, we don’t completely lose our abilities to be mentally engaging and uplifting people. Most of the inadequacy is based on our deep-seated biological perspectives of ourselves. Even excluding illness, it’s the same problem with any supposed “inadequacy:” depression, high or low weight, learning diasbility, etc.

This causes us to hide behind a “sick curtain.” We go out with friends only when we feel prepared to hide our inadequacy. We don’t ask for compassion or understanding for fear of rejection. We avoid social interaction altogether because we’re afraid of being seen as weak or undesirable. Eventually, we are the sick and lonely birds at the bottom of the cage.

If we were honest with ourselves, we could remedy the situation long before it became so dire. The owner doesn’t stop loving or caring about the bird when it becomes ill, and he doesn’t find it tedious to occasionally lend some extra attention. Similarly, a sick person doesn’t become entirely repugnant when they become ill. It’s only certain parts of our beings that change, and those changes don’t prevent us from being good friends and having meaningful interactions. Furthermore, if you’re ill, you have just as much of a right to be related to as you have an expectation to find ways to relate. You deserve support and understanding, and you are just as worthy of a social life as those who are healthy.

One of my best friends, Gabrielle, who is incredibly supportive of me and visits me often
One of my best friends, Gabrielle, who is incredibly supportive of me and visits me often

If we keep hiding our supposed inadequacy for fear of rejection, we become completely isolated, which is counterproductive to our original goal of social belonging. We have limited physical abilities, but we don’t have limited love, and we may need friendship, now, more than ever. So say something. Pave the way for yourself. You will be slower, sadder, unable to do the same things as everyone else, but you won’t be alone. The alternative is to live like the bird in the bottom of the cage, performing for the outside until you’re exhausted and alone.