Bikinis, Battle Scars, & Warm, Woolen Mittens

I’ve been writing this post in my head for months – since January! Somehow it never got written, and then new things kept happening that I thought should be included…  and suddenly it was November. Tomorrow is Thanksgiving, so I am determined to finally get this post written and online. I can’t think of a more appropriate time to post it.

Living with a chronic illness often means that we are forever bemoaning the loss of yet another person who has jumped ship from our lives. While this sentiment is often justified, I sometimes feel as if I spend so much time focusing on those moments that I forget to truly appreciate the friends that have stuck around and understand what my life is like. Sometimes this understanding is blatantly obvious in the form of gifts and such, but other times it can only be found by reading between the lines.

I don’t really send my blog link out to people that I actually know in real life very often. I pour so many honest, personal feelings into my posts that everyone knowing them would just feel awkward and like a violation of my privacy. Of course, that means that people only know what I’ve actually told them, and I’ll be the first to admit that it isn’t always very much. Still, sometimes I get off-hand comments from people I’m not close to anymore telling me that they saw something on my blog. That always shocks me, because I sent them the link such a long time ago, and we’ve drifted so far since then, that I didn’t even realize they still look at it. Likewise, I have an old friend that I barely even keep in touch with beyond a big group dinner or drinks when she’s in town for Thanksgiving. Yet a couple of years ago, she told me that when she heard about the lupus she spent a lot of time learning about it online. She’s nowhere near the only person that told me she looked into it, but she was the one that shocked me the most because I’d never talked to her about it even once.

Way back last January, I met up with a close friend for dinner. She made a comment that stuck with me. She told me that when she, and our third friend, say, “How are you?” That means that I can gripe about my illness, or I can just say that I’m fine. Or I can ignore it altogether and just talk about work or the weather, and all of those options are perfectly ok. Those three words are so disarmingly simple. Just “How are you?” We say them all the time, sometimes even to strangers. But we don’t always mean them. They’ve become an extension of the standard “hello” greeting. Or, even when we do mean them, sometimes we don’t really want all the details. Over the years, I’ve learned which friends need me to skip over the illness-related realities, because I can see that they’re visually uncomfortable.

The funny thing is, those sorts of statements and questions are so generic that it’s easy to miss the depth of their meaning. It’s not so much what the words are as what they represent. I love when I get texts from a friend saying things like, “Thinking of you in this turn of cold weather.. Hope you’re doing alright.” It’s comforting to know that the sender cares and is aware of how my body reacts to this kind of weather…. but she doesn’t require a definite response. I don’t have to muster up the right way to say, “I’m holding up ok.” or “Yeah, it really sucks.” At the same time, now I can do so if I need to, without feeling as if I’m mucking up someone’s day with whiny texts.

The weight gain caused by my medications was something that I really struggled with. Losing the weight was a huge struggle too. Now, even though I’m more or less satisfied with my weight, I’m still self-conscious about the stretch marks that all the weight changes left behind. Honestly, last summer was the first time I’d worn a swimsuit, let alone a bikini. I was a little uncomfortable with it, but I knew that I was safe with my friends. I still made an awkward off-hand comment about the fact that I try to think of them as something along the lines of battle scars. They didn’t bat an eye. All I got were grins, chuckles, and a new conversation topic. And, frankly, I doubt that they even remembered the comment, but their reaction was so natural that I stopped feeling awkward about all the marks.

When another close friend of mine went on vacation to Machu Picchu, she came back with gifts for some of her friends. She’d chosen unique gifts for each person, based on what she thought they’d like best. She handed me a pair of thick woolen mittens, commenting that she remembered how much I’d struggled with the truly brutal winter we suffered through last year. Sometimes I think maybe people just sort of space out when I start talking about things like how brutal winter weather is for me… and sometimes they really do. I see their eyes glaze over. It’s times like that one, though, that I feel like I’m about to cry. In a good way (yes, boys, there IS a good way), because those moments remind me that there are people who are paying attention and who actually remember and care about what I said.

The other day a friend commented that I didn’t really have anyone to talk to when I was going through the whole diagnosis process. She meant that I didn’t have anyone who’d actually been diagnosed with lupus to talk to, but my response was, “Well, but I had you.” and I meant it. There is something to be said for talking with someone who’s actually been through this stuff, but it’s also easy to underestimate the importance of the continued support of the people that have always been there for you. You expect that those people will be around for you, so you aren’t shocked except if they suddenly aren’t anymore.

It’s hard to tell whether these people realize how much these little things mean to me. Sometimes it’s hard to articulate, because I’m not sure that there are really words for those feelings of love, and belonging, and reassurance (yet those words just don’t seem to encompass the feelings completely either.) I would say that “friendship,” is supposed to encompass all of those feelings, but that just seems cheesy. So I will just say this: to those of you I mentioned in this post, and to the rest of you who are equally important (but I had to stop myself before I wrote an entire book,) this is me saying that I’m thankful. I’m thankful, and I’m very, very grateful even if I don’t always manage to say so. I couldn’t have dreamed up better friends had I tried.

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Return to Sender: A Letter to My Pre-Illness Self

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “Write a letter to your pre-illness, pre-diagnosis self.
I was supposed to write a (short) letter to pre-illness me. This was harder than it sounds, because it was hard to know what to focus on. Details? General wisdom? In the end, I went with generals because I couldn’t figure out which details to focus on.
Dear Pre-Illness Me,
I hate to break it to you, but there’s no good way to do this other than to rip off the bandaid. Something very wicked your way comes. Soon. Ok so that sounds like something of an epic, species-threatening scope. It isn’t, relax. But it is absolutely of a life-shattering, personal reality-discombobulating scope. Right now, you have no conception of the realities of chronic illness, and there are some things that I wish we’d (I’d? You’d? This is so confusing…) figured out before it happened.
Live your dreams, but think of some backup dreams just in case. Fight for your dreams, by all means. But remember that some things in life can’t be found no matter how much you fight for them. Sometimes it’s necessary to have back up dreams. Welcome to the real world, I hate to be the one to usher you in.
Stop taking your friends and family for granted. It’s so easy to get caught up in your own life, but remember that you give what you get in life. Someday soon you’ll realize how important those friends are to you. And at that point it will be so much harder to be able to hang out as much as you’d like. Don’t let the people who are important to you drift so far away that they don’t want to fight for that friendship even when you do. Friends are important, but you won’t truly understand how important they are until the world starts to crash down around you. On the flip side of that: stop wasting your time with the people you can’t rely on. If you can’t rely on them when life is peachy, you won’t be able to rely on them when things turn rotten.
Learn to choose your battles. You have to be able to shrug off the minor grievances. Your strength will be limited. This means you can’t waste the strength that you have on things that don’t really matter in the long run. That coupon you forgot to use? That paper-cut on your finger? Yeah, not worth all that whining…
Don’t take your free time for granted. You won’t be able to have as much free time pretty soon because you’re going to require a lot more rest. Moreover, what you can actually do with that free time will be even more restricted by the realities of chronic pain, arthralgias, myalgias and the need to stay out of the sun. So get out there on the lake or hike up that mountain, that chance may never come back around.
Learn to truly appreciate the little things. These are the things that matter, but they’re easy to forget about in a world filled with constant new thrills and adventures. That afternoon you could spend reading with a cup of tea? Lovely. That time you were able to have a three hour chat a coffee shop with a close friend? Wonderful. That family dinner you managed to cook and eat without fighting with your sister? Near miraculous. These are the things that matter. It’s easy to forget about these little things when the bigger picture has fallen apart.
Just remember – the people that matter, and the things that truly matter, are still there. It’s easy to lose sight of them, but they still exist. When things fall apart, it’s easy to fall into a despair, but those little things that truly made life meaningful are still there. You just have to remember to appreciate them.
Love,
Future You
The thing is, though, that I can only try to remember what I really thought and felt back then. What I think I remember of myself is tainted by hindsight. Who I’m trying to write a letter to and who I really was back then are two different people. So my letter keeps coming back, marked with words that Elvis immortalized: Return to Sender, Address Unknown.

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Work Series: A Day In The Life

This blog post is part of World Autoimmune Arthritis Day 2014.
6:00am: Wake up. Feeling awful after tossing and turning all night. It snowed overnight, and my pain levels spiked, which led to insomnia.
6:05am: Snooze alarm goes off. Force myself to wake up, and start doing a few daily stretches in bed so that I’ll be able to stand and walk when I get out of it.
6:15am: Drag myself out of bed and proceed to brush my teeth. Stiff fingers haven’t loosened up enough yet, so this proves difficult because I can’t get a good grip on the brush.
6:30am: Take a hot shower. This helps a little, but I don’t have enough time to really soak most of the stiffness out. Take first part of morning meds.
7:00am: Time to leave for work. Luckily I made my lunch the night before. Mom offers to drive, but I insist because she recently hurt her knee and driving on the icy roads might stress it out. We discuss taking the bus due to the roads, but this is not an option because there isn’t a bus available at the late hour when my night class gets out.
9:00am: Finally reach work, an hour late. Achey and exhausted after getting little sleep and the long drive. Make a cup of tea and plug in my heating pad while my computer starts up. Take remaining morning meds.
9:30am: Heating pad starting to release the tension in my lower back a bit. Have thawed out and getting down to work. Managed to eat my apple (breakfast) and the cup of tea has revived me a bit.
10:00am: Get called to another part of the building. Spend the next 2 hours on my feet running around the building. Feet hurt despite sensible shoes.
12:00pm: Lunch time. Too tired and pain levels too high for hunger, but make myself eat a bit. Manage maybe half of my lunch. With food in my stomach, able to take painkiller.
12:30pm: Nosy co-worker comes in for something work-related, then wants to know why I have a heating pad. Make a joke about keeping warm in this frigid winter, because am not comfortable talking about my illnesses at work, especially with gossipy co-workers who I barely know.
1:30pm: Try to get some work done. For once, grateful that at least some of my job involves just sitting still and working at a computer, because don’t feel up to running around the building some more.
4:30pm: End of the normal workday. Happy hour planned for officemate’s birthday. Feel like I’d rather just have some time to myself to rest before class, but feel that it’s important for my work relationships as a large part of the office is going. Attend but don’t drink because have taken painkillers and have to go to class in a bit. Pretend I’m feeling well, because I don’t feel like answering questions. Don’t want to bring down the group mood, and most of the staff don’t know about my illnesses to begin with.
5:30pm: Leave happy hour and cross campus to classroom building. Pick up a cup of tea from a coffee shop to help me get through class.
5:45pm: Time for class. Snack on some nuts and dried fruit with my tea. Foggy brain makes it hard to focus.
9:05pm: Class finally ends. I’m exhausted.
9:30pm: Finally get out of the parking ramp due to all the students leaving campus at the end of night class. Drive home is painful as knee is stiff from long drive in the morning. Mom took bus home at the end of the workday.
10:00pm: Reach home. Try to eat a bit of dinner so that I can take my nightly meds. Wish for a hot soak in a bath, but fear I’ll fall asleep. Take a hot shower again instead.
11:00pm: Lights out, finally. Fear another night of pain-induced insomnia.

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Book Review: In the Kingdom of the Sick

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. More specifically, it’s part of Duncan’s “ILLiteracy Project” carnival.

(Note: Duncan chose the book and has asked that we focus on reflection and not on the book’s topics which he will outline.)
3.5 stars
Before I can lay out my thoughts on In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards, I must make a confession. I have a masters degree in public health. This means that I have studied this topic in a lot of detail. The interplay between the ill and society was a topic of strong personal interest to me long before I identified as one of the ill, and I have therefore done a lot of reading on the topic even outside of my classes. Obviously, this colors my view of a book like this, so please take what I say with the appropriate grain of salt.
I had mixed feelings about this book. This is a topic that I have a lot of interest in, and yet I found that it rambled on a lot. Contrarily, I would have liked more detail, because while she covered a lot of years and a lot of changes, the detail in each of those areas wasn’t sufficient to satisfy me. (I will freely admit that it probably would have been discouragingly long had she actually elaborated that much.) However, I think that this is a good introduction book. If you find the topic of the relationship between society and chronic illness – no matter whether that is a general interest, an interest due to your own experiences of living with an illness in our society, or the experiences of a loved one – of interest to you, then this might be an interesting book. This is true if you are looking for a comprehensive historical timeline or a general introduction, or are interested in the shifts over the years. If you are interested in a specific interplay or illness, then this probably isn’t what you’re looking for. Edwards hits on an extensive list of issues and topics, which a reader could go look into in more detail if needed. There is a comprehensive bibliography in the back. 
Edwards fights chronic illness herself, so I was expecting this book to hit me on a more personal level. The cases shes uses to demonstrate and detail the topics were compelling, but it didn’t feel like her own experiences really came through. That being said, her description of what it’s like to be suffering but unable to get a diagnosis certainly struck a familiar chord with my own experiences. I appreciated the cases, because public health is often a lot of dry statistics, with the personal experiences lost to the sands of numbers. It’s validating to see that my own experiences with and views on how society views illness are supported by Edwards’ extensive research (both the technical and the personal testimonies.) More specifically, I liked the way she interwove the stories with the history she was trying to present. She gave the stories context in the historical social timeline, which was interesting to me from an academic point of view, but less so from a patient point of view. In some ways, it’s a validation. It says “See? This patient wasn’t crazy! Society really did believe/act in ___ manner!” On the flip side, I felt as if the feelings in the story were marginalized in the process. I’m sure she didn’t intend that, and most people will probably disagree with me, but it felt that way to me. I think it felt that way because the narrative line of the story got a little muddied. Of course, the topic is the social history of illness in the US, with the stories used as illustration, so I guess that’s excusable.
Edwards also did a great job with overarching themes and the changes provoked in them as society, science, and public policies changed. This provides the reader with a chance to put some thought into, “Okay well what we have now isn’t stellar , but how much worse was it in the [enter decade of choice here]?” or “Was it really better in that decade? Is it really better now?” and so on. I also thought that she had some thought-provoking moments in the discussion of how the realities of living with chronic illness could run contrary to the goals of major movements like Women’s Suffrage simply because a patient was unable to claim the rights they were fighting to receive due to the limitations of illness. Most interesting, for me, was the discussion of the Disability Rights movement and how that didn’t always line up with the needs of chronic illness sufferers. There is, to this day, a lot of debate over the definition of “disabled” and who should qualify for the definition and therefore the rights afforded to it. The discussion of chronic pain was also well done. She wasn’t withholding any punches, and I liked how she included the contradictions involved in the judgement felt by people who suffer from chronic pain. Pain is, first of all, by its very nature un-measurable, because everyone’s perception is different. This is compounded by the fact that if you stay in bed, then society likes to think you’re lazy and you’re in pain simply because you won’t push yourself through it. Meanwhile, if you drag yourself out of bed, you not only aggravate your pain but are also judged to be exaggerating, because if you could drag yourself out of bed, then you couldn’t possibly be in that much pain could you? 
As a patient, I think there was certainly a lot of validation in reading this book. It’s thought-provoking and it does give readers a lot to think about. I think people who have no personal relationship with chronic illness (their own or a loved one’s) but an interest in the general topic could get a lot out of this book. There are a lot of places where I got pretty indignant about the realities of the society-chronically ill relationship over the years, and I think that speaks to the fact that it was well written enough to engage my emotions. I liked the emphasis on the fact that illness is a natural part of living. Granted, the idea of chronic illness, especially at a young age, is not part of our societal construct, but illness itself is part of human existence. We are born, we live, we are ill, we die. Environment and genetics certainly play roles in this, but they aren’t the only things that are involved. A person healthy enough to take part in long distance bike races today could be hit by a car tomorrow and have chronic pain for the rest of her life. The line between the kingdom of the well and the kingdom of the sick is paper thin. I’m choosing to skip a discussion on the psychology involved in the human denial of illness, simply because it would take multiple blog posts to cover with any semblance of adequacy.
 
The one thing that kept leaping out at me, though, was this fact that despite the over 150 million chronic disease sufferers in America (there are those pesky public health statistics again!), we don’t have a unified face. Our illnesses often keep us restricted to our homes or even our beds. However, with the advent of the internet, I believe that this is slowly changing. We have blogs. We have forums. We have Facebook. We have Twitter. We have YouTube. We don’t have to be isolated anymore. I think Edwards made a good point with that – we don’t have the voice we need to have within the world of health care and public policy, let alone society at large, because we were never able to truly rise up before.  We can now though.

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Filed under blog carnivals/grand rounds, book review, community education, insensitivity/ignorance, rant

Book Review: How to Be a Friend to a Friend Who’s Sick

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “What is your favorite book about illness?

(Note: Those of you who interact with me via twitter, etc know that I read voraciously. This means that my favorite book about illness today may not be my favorite book about illness tomorrow. I’m going to try to post book reviews from time to time of books that I have loved or not loved and why. However, for the sake of this blog carnival topic, I decided to pick up a book that was recommended to me, but I hadn’t read yet. As such, it isn’t my favorite, but I thought it was worth writing up a post about. I’m excited to see what other bloggers chose as their favorite books. I think my to-read list is going to be growing considerably in a few days…)

3.5 stars

The book How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin was recommend to me by my therapist when we were discussing how hard it is sometimes for me to be a good friend and equally to deal with unsupportive friends/family. Pogrebin started thinking about this topic when she was fighting breast cancer and noticed the varied reactions of her friends and family. The book is actually a collection of short stories from people with varied experiences intermixed with Pogrebin’s own story. What I liked about the book was that she included the reactions to friends’ behavior as well. There are Dos and Don’ts lists and varied suggestions for how to rephrase common questions that are inadvertently offensive or difficult to answer. I chuckled over her commentary and lists of commonly heard comments and questions, many of which I’ve heard myself. A lot of this advice feels obvious, but it’s easy to forget in the stress of seeing a loved one fighting what they’re fighting. Moreover, I think different people will get different things from this book based on what their experiences have been so far and what sort of guidance they are looking for. It did seem a bit long, but I think that’s partially because it’s clearly geared to be helpful even to people who have never had an ill family/friend before.

I think the trick to reading this book (for both patients as well as friends/family) is to try to keep an open mind, remember that everyone’s needs are different, and not to get too offended when you disagree with something that Pogrebin or one of interviewees opined. The book is theoretically aimed at the friends/family of patients, but I think patients can get a lot of out of this book as well. One of the things that made this book feel more appealing for me was the inclusion of incidents in which Pogrebin felt she had failed her friends/family in terms of offering support. And, in truth, even a person fighting a chronic illness can be inadvertently unsupportive of someone else fighting the same illness, because the two people have completely different needs from their friends. There is no one size fits all answer to the “How do I be supportive?” question, and this book drives that home.

As a patient, it’s nice to hear stories that show me that I’m not the only one that has struggled with incidents where friends/family that I rely on were unsupportive. However, reading through these stories was also a great reminder that people generally don’t intend to be unsupportive. They want to help, but they don’t know how to help ME. I emphasize that because one thing that struck me as I read this book was that with so many people fighting so many varied illnesses, especially when combined with how much each person’s needs vary from the next, it’s entirely possible that friends/family are doing what they were told was helpful and supportive for someone else. If you’re told that it was helpful once, it stands to reason that you would offer the same help/advice again. From a patient’s point of view, one of the best things that I got out of this book was a reminder that I need to be clear about what I need from people. It isn’t fair to always assume that they’ll be able to guess, especially if what I’m going through is totally beyond the context of their own experiences or that of their other close friends/family. Reading what worked for other people gave me some new ideas of how to direct my friends/family towards what is actually helpful, hopefully without making them feel hurt or offended, because I know deep down that they’re only trying to help.

For friends/family looking for ideas on how to be supportive, this is a really good place to start. Reading different people’s experiences might provide a more detailed and diverse view of what a patient is feeling in these circumstances. This book may also provide some guidance of what is commonly found to be offensive. Of course, what one patient in the book found helpful might be totally offensive to your own loved one. However, the book can only provide a limited amount of guidance here. This is what I would suggest: I think that the lists of Dos and Don’ts are a good place to start. Pogrebin also included helpful re-phrasings of common questions/comments. For example, “What are you feeling right now?” instead of “How are you feeling?” or “I can only try to imagine what you’re going through.” instead of “I know just how you feel.” These are a good start, but at the end of the day I think that most people would be open to your sitting down and saying “Hey, I can’t begin to understand what you’re going through, but I really want to be supportive. Here are the things I’ve read, but I don’t know whether they apply. What would be helpful for you?” Remember, though, that if you ask and then don’t follow through, that person is going to be even more confused. The fact is, if you’re reading blogs and books to find out what you can do to be helpful, then you’ve already realized that you don’t have the information that you need. Blogs and books like this one can get you part of the way there, but you need to be able to customize that information to your loved on. There’s only one person who can tell you what you truly need to know, and just sitting down and having an open conversation shows how much you care and makes it possible for both of you to be happy in your friendship.

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Sunday Breakfast Club – Poesies & Metaphors

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them. So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

No matter what you’re accustomed to during a “normal” winter, Winter has been pretty brutal across a large chunk of the USA this year. I live in the upper Midwest where we have had some really nasty wind chills and such. We expect cold winters, but not like this. It’s been miserable, and the extreme cold plus the snow have had my body in hysterics. The occasional warm spells didn’t really even help, because the sudden jumps from way-below-zero highs to highs in the teens or 20s (F) back to way-below-zero highs again confused my body even more. Meanwhile, I’m trying to walk or drive on the ice rinks we are currently calling streets. It’s been the kind of winter that starts to make me feel like maybe this year will be the year when Spring just forgets to show up…

There’s a bit of poetry that popped into my head during one of our especially cold spells, and has been providing a bit of solace ever since. It’s part of a much longer poem, and is taken rather out of context, but part of the appeal that art and poetry hold for me is that I don’t necessarily have to interpret them the way they were intended to be interpreted.

For winter’s rains and ruins are over,

And all the seasons of snows, and sins;

The days dividing lover and lover,

The light that loses, the night that wins;

And time remembered is grief forgotten,

And frosts are slain and flowers begotten,

And in green underwood and cover

Blossom by blossom the spring begins.

-Algernon Charles Swinburne, Atalanta in Calydon

I’ve been reciting these lines in my head as a reminder that eventually Spring will return, even if it doesn’t feel that way right now. I may not be able to see it, but daylight hours should be getting slowly longer. I try to remind myself that Spring starts to develop deep in the Earth and trees long before the buds start to show on the branches. Besides, the line “frosts are slain” has a splendid sort of vindictiveness to it that fills me with a rather unkind glee…

The thing about this concept of not always seeing the early signs of something is that it applies to more than just the Spring. It also applies to my flares. Just like I usually get a warning of their impending doom, they have usually started to gently ebb away before I realize that there is some relief coming my way. Of course, since I don’t see the signs, I’m busy cursing the flare in the meantime. The point is, really, that I’m so miserable, be it from a flare or the winter cold, that I can’t, or won’t, see the signs that relief is coming. Albeit slowly.

So while my body continues to flare in anger at the weather, and Winter marches interminably on, I try to put some faith and hope in the invisible signs of better days.

What inspires you to hope for better days?

*Disclaimer: As I stated above, I have taken these lines out of their greater context and applied the meaning as I am choosing to interpret it. To the people who never feel satisfied until they have mocked someone else: should you feel an absolutely redundant but inescapable need to point this out to me, please send me an email rather than leaving a comment. Preferably with a subject line with something along the lines of “mocking your interpretation of the poetry” or something so I know what I’m walking into when I open it. Thanks 😉

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Dating and the Chronic Life

 

Chronic diseases affect just about every aspect of a person’s life, but which aspects are most painfully affected varies from person to person. Many people struggle with maintaining friendships and feeling like an active, contributing member of society. I have been very lucky in those two areas lately, but I find that the dating and romantic relationships prove to be the hardest part for me to deal with. Dating can be a pretty difficult process to begin with sometimes, but chronic illness just adds another level of messiness.

 

With both full-time work and part-time school, the amount of time that I can potentially spend with someone is already limited. This is then compounded by the fact that trying to manage my schedule with my illnesses means that by the weekend I really just want to collapse into bed and stay there. I’m exhausted and pretty much useless company by Friday night. … and that’s just on the regular days. The problem is, I can never predict which days will be regular days and which days will be “OMG I’m so exhausted I can’t see straight” or “OMG I’m in so much pain that the idea of even trying to get out of bed is excruciating.” So I could potentially plan a date that fits into my ridiculous schedule…. and then wake up that day and say “yeah…no.” Which really sucks, and makes it hard to convince a guy that I’m actually interested. This, of course, applies througout a relationship. I can never truly guarantee that I’ll feel up to doing something. Then there’s the fact that as a vegetarian with gastroparesis, dinner dates are hard. Yes, I can usually find something that’s vegetarian, but I can usually only finish maybe 1/3 of it. It’s uncomfortable sitting a table and picking at my food. It seems like a minor thing, but it makes my dinner dates all the more awkward.

 

Of course, those are only the initial issues. The major elephant hiding under the rug, of course, is the reality of my chronic illnesses themselves. I never really know how or when to let the elephant out of hiding. Trying to hide that something is going on with me is about as easy as trying to hide an elephant under a rug. The big lump under the rug shows in the aforementioned issues with scheduling a date in the first place, it shows when I can barely manage to eat a child-portion meal, it shows when I wince as I try to stand up after sitting at the dinner table for so long, and it definitely shows in my limitations in terms of activities for dates. Hikes? Ummmmm yeah. Not so much. The end result is that people either think I’m not interested, or see the bump under the rug, but can’t figure out what it is. But most of the time they don’t seem to care whether it’s an elephant or maybe a hippo or a rhinoceros? The reality is, most of the guys feel uncomfortable and don’t really want to get into any kind of relationship with someone with this much baggage. Now, granted, a friend reminded me awhile back that most everyone has baggage of some kind. My friend, in her infinite wisdom, said that the trick is finding someone who can accept your baggage and whose baggage you can accept. Well, getting someone to accept it seems to be the issue.

 

I think part of the problem is that I never know when to bring it up. I don’t like to bring it up too early because then I feel like it’s casting a shadow over me and who I really am. I want to at least stand a chance of a guy being interested in ME before I mention my illnesses. On the flip side, if I wait too long I’ve had guys say that they feel cheated and that I should have ‘fessed up earlier. It’s hard to judge the right moment when every guy is obviously different. More than one guy has been put off by my timing, and one even said that he had thought I just wasn’t that into it, but this reality was “way worse.” I once had a guy catch sight of my medical ID bracelet in the middle of asking me out. He faked a page and left without even finishing his sentence. Which just begs the question “Is there truly even a good time?” It’s nice to weed out the guys who don’t want to deal with the realities of my life early, but sometimes I feel like maybe if they got to know me a little first they might be interested in at least giving it a try.

 

Watching my friends move forward with their lives is hard too. One of my best friends got marrried last summer, another one around Christmas, and I’m pretty my sister is headed in that direction in the very near future. Sometimes it’s hard to deal with the dual-ing feelings of joy for their happiness and my own loneliness. Dating isn’t easy even without chronic illnesses, and a lot of my friend are still single right now. This sort of helps, of course. Still, certain times are hard. Valentine’s Day. (Last year my sister bought me a bag of chocolate. Which she later announced – in front of a group of people, mind you – was “pity chocolate” that she bought me because she “felt bad that I was home alone when she was out on a date.” This was supposedly a joke. I don’t think I’ll ever find that kind of cruelty funny, and it certainly didn’t make it any easier.) Summer wedding season is rough too. I try to remind myself that days like Valentine’s Day don’t actually matter in the grand scheme of things. I know this in a logical frame of mind, but sometimes my emotions overrule the logic. This of course leads back to my acceptance theme for this year. Trying to just accept that it’s probably going to be harder to find an accepting guy. Trying to accept that this is only partially in my control. Most of all, I’m struggling with trying to accept that it’s ok for me to feel both overjoyed at someone’s luck and happiness AND miserable about my own love life (cough. lack there-of).

 

Whenever I post something about dating, I invariably get comments or emails from the people who have been lucky in this arena. Generally, when one or both members of a happy couple start to lecture, grating feelings of resentment and annoyance tend to be induced. However, there is some solace in knowing that there are people out there who can be accepting of illnesses like this. Honestly, I get the most reassurance from people who started dating someone after they already had their illnesses. I think this is because, at least to me, asking someone to accept me part and parcel with my illnesses is different from asking someone who is already in a committed relationship with me to accept that I’m being diagnosed with a new illness. I’m sure that that situation has its challenges too, though, and I’d love to hear from people about what they did to get through either of these situations. Have you found any good ways of getting around these issues? Or in explaining your illnesses? How do you judge when the right time to “‘fess up” is? I know that some of this is just a matter of finding the “right guy,” but if anyone has any tips or tricks I’d be grateful…

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Filed under advice/suggestions, coping, introspection, rant