Tag Archives: Tiffany Jones Early

5 Ways I’m NOT a Total Drain on a Relationship

I’ve spent a lot of time writing about why it’s so hard to be married to someone with a chronic illness. It is. Joe puts up with a lot. He is as affected by my unusual sleep/wake schedule, my unpredictable pain levels, and the general emotional roller coaster of illness as I am. He drives me to appointments, suffers through medical jargon, and hopes for better days right along with me. I’m not trying to minimize his sacrifice, because it is most definitely significant.

Even though I recognize all Joe does for me, I’m sometimes exhausted by people who act like Joe is the holiest of saints for putting up with his crippled, reject wife. I’m aware of the sad glances, the hushed voices, the people who ask Joe how I’m doing- even when I’m standing there- because they assume he’s managing my care. To some degree, I’m glad they see his silent heroism. I’m glad they see that he is a trooper who has dedicated his life to making the best of a bad situation. Seriously, he’s awesome. If you would like to invite him twirl the baton in any parade, I’ll be the person cheering the loudest.

BUT I’m still a human. I’m still a vital part of this relationship. As a matter of fact, if I weren’t here, I sort of think Joe would get lonely. While I think Joe is the most fabulous of the male species (let’s be honest, males are their own distinct species), I think he and I need each other- rather than I simply need him and he kindly and good naturedly puts up with my drama.

1. We have fun together. Believe it or not, my life with Joe is at least 80% Netflix binges, sing alongs while we cook, puppy snuggles (with the dog- that’s not a code or anything), and philosophical discussions that make my eyes cross. The other 20% is less fun, of course. But, seriously, I know people that would love to have an 80% enjoyable life.

2. My brain is mostly functional. Sure, there are brain fog moments (which sometimes add some silly laughter to the 80% of fun in our lives), but for the most part even when I can’t walk, sit up for long, or do basic household chores- I can still think. That means I can help Joe brainstorm for book ideas, teaching techniques, or general household problem solving. I’m not completely useless. There are days that I feel completely useless, but I’m glad I still have a way to contribute.

3. I’m a good listener. Joe and I haven’t kept it a secret that he struggles with depression. I realize that depression is a complicated illness that requires much more than a good listener, and I’m forever thankful for doctors, therapists, and medication. However, I still believe that I have a role in his success despite obstacles. I listen to him. I occasionally offer advice. (Actually, I typically offer advice, but it’s only good advice on occasion.) I love this guy, and I want to do my part to make this life simpler.

4. I love the people he loves. My best advice to anyone in a new relationship is to learn to love who your significant other loves. His parents hold a special place in my heart, and I do all I can to help Joe as he cares for his parents. I’ve developed an affection for Joe’s friends, because it’s easy to love someone who loves my husband and treats him well.

5. I’m a valid excuse. Okay, this one might not be a “good” reason why I’m not a total drain, but it’s true. Here’s the thing- fevers and dislocated joints are a part of my daily existence. That stinks; it really does. BUT if there’s ever anything Joe really doesn’t want to do he can truthfully say, “My wife dislocated her hip and needs some help around the house.” Or “My wife is running a fever and vomiting. I don’t need to leave her.” Granted, he hasn’t utilized those excuses (except when I actually needed someone to stay with me), but I like knowing they’re there. It makes me feel like he’s getting a little something out of being married to me. Edit: Joe says he used me as an excuse once when he was sitting next to a really strange man at a meeting. My apologies to our friend, Twyla, because he left her alone with said unusual man.

I’ll grant you some of my reasoning is silly. I’ll even grant that most of the things on my list should be expected of anyone in a healthy relationship. However, I want the world to see that when you’re married to someone who is disabled, it’s not always a labor of love. Sure, there are bizarre moments that would never happen in a relationship between two able bodied adults, but for the most part we’re normal. Joe didn’t have to sell his soul or his life to get married to this hot mess. Do I regret that I brought illness into his life? Sure, I would totally change it if I could- for both of us. That, however, does not give me an excuse not to be as good of a partner as I am capable of being.

Peace, love, and health, friends.

Sorry, not sorry. Social media is my bestie.

My husband is the ultimate extrovert. Put him in a crowded room and he’ll feed off the energy for days. Me? Well, the very thought of a crowded concert or even a potluck makes me cringe. I love people, but I’m not a person who can work a room. It’s unsettling for me. Add to that the constant fear of brain fog moments, health issues, and general social anxiety, and I’m a hot mess in a crowded room.

This seems to be the lament of many of my chronic illness friends. It’s not that we don’t like people, but rather that being around people is complicated. When you feel bad it’s hard to have the ambition for social engagements. Chronic pain makes it hard to concentrate on the conversation you’re having. And, to be honest, just the general lack of understanding the public has for my (and many others’) invisible illness is unsettling.

Basically, I’m too dang awkward to be in public. Just this morning at church a woman a couple pews in front of me turned around to shake my hand. She was far enough in front of me that she had to lean over the pew between us and still couldn’t reach me. I was sitting while everyone else was standing, because my heart was doing the cha-cha in my chest. In an effort to act like I had decent social skills, I stood up to lean toward her- then stumbled and grabbed the edge of the pew for balance. Then I burst out with a barely intelligible line- “I’m sorry. I don’t stand good.” WHAT?!? Of all the possible things I could have said, why did I say that? Seriously, there’s never an excuse for bad grammar. I should be kept in a cage.

However, on Facebook or Instagram, I’m a completely functional adult. Given the time to think about what I’m saying before I say it, I make sense, and I’m typically grammatically correct. (Full disclosure- I still rely on autocorrect for spelling.) With iPhone edits and social media filters, I’m way more cute and graceful. I need social media to be a normal person. I realize that you’re probably thinking, “You don’t have to be perfect. You want to make friends based on who you are- not a contrived online profile.” I agree with you. However, when illness turns your body into something you don’t even recognize anymore, I think it’s fair to find your confidence for entering the public realm wherever you can find it- even if it’s in the unrealistic world of social media. It’s helped me find who I am again, so I thought I’d share it’s virtues with you.

  1. I’ve made friends. It’s true. When I have exciting news, one of the first places I want to share my news is one of my chronic illness support groups. You see, at one point I had work friends, but the disabled life doesn’t exactly afford many of those. I met people for lunch and coffee, but that’s a little harder to do now. There are weeks that go by, and I don’t speak to any humans in person other than Joe and the lady who gives my allergy shots. However, my online friends are always around, and if they’re not they will be eventually. I’ve had the opportunity to meet people who live a life very similar to mine. I can share victories that don’t seem like victories to my healthier friends. My chronic illness friends understand when I post, “Guess who took a shower, fixed their hair, went to lunch, and unloaded the dishwasher today? This girl!” Normal people would probably not realize this is a huge achievement. My chronic illness friends on social media understand that this is a big day!
  2. I’ve found a way to be a part of something that matters.  As my health has changed, I’ve been less capable of doing a lot of the things I used to do. I can’t volunteer to tutor students or teach Sunday school. My body isn’t very reliable. For a while, I felt like I no longer had a purpose or a way to contribute to the good in the world. However, I learned that the social media world is filled with lonely and isolated people- like me. I can’t be there physically, but I can listen. I can offer prayers and hope and encouragement. Online support groups have been a fantastic outlet and a great way to try helping others rather than focusing on my own problems.
  3. Social media has an off switch (and it’s available 24/7 too!). If I have a migraine or a particularly symptomatic day, I have the option of not looking at social media. Instead of being online when I feel sick and grumpy, I can make the choice to stay away. Of course, you can make that same decision in real life, but it’s more difficult. Real life people involve commitments and explanations. Online interaction happens when it happens. There’s always someone there when you’re ready.

Is social media the perfect answer to all social interaction? Of course, not. It’s important to make friends who can actually be there physically when you need someone. However, if you can’t handle all that yet, social media is an awesome place to start. I’m unapologetically in love with Facebook and Instagram. (Twitter is just not my jam.) Does that mean that I’m one of those people that’s tied to their phone screen a lot of the time? Yes, but it’s only taking away from my napping life or doctor’s office waiting time. I’m okay with that. This life is difficult enough, and if an online support group, online friends, or anything else makes life easier for you- I say do it. Social media can be your bestie too. She’s big enough for all of us, and I promise not to be jealous.

 

Peace, love, and health, friends.

Developing Selective Hearing (and other priceless chronic illness skills)

Words can hurt- maybe not quite as much as chronic illness, but they can definitely hurt. I was in a situation recently where a well- meaning person said something completely hurtful about how I manage my illness . . . and they were just making conversation. This person did not mean to hurtful or judgmental; they truly felt that their comments were helpful. They weren’t . . . at all. I realized there were a few ways I could handle the situation; I could get my feelings hurt (and maybe say something equally hurtful in retaliation) or I could trust that the person was not trying to be hurtful and gently educate about the nature of chronic illness. Obviously, the latter was the better choice, but it isn’t always easy to treat others with grace and kindness . . . especially if you feel misunderstood.

In the past few weeks alone, I’ve had people comment on me not working (when I look “completely fine”). I’ve had people tease my husband about not standing at an event when he was sitting with me because I couldn’t stand long enough to participate (Don’t worry. It wasn’t the national anthem or anything that was worth the health sacrifice.). Over and over, I have felt like I had to bite my tongue to keep from lashing out at people who truly don’t understand. I don’t want to be so hyper-sensitive to what everyone says that I cannot be around non- chronic illness people without feeling hurt or judged. I realize that not everyone can understand what I deal with, because they haven’t had the same set of circumstances. I’m glad they don’t understand; if they did, that would mean they’re stuck on this journey too. So, in an effort to remain a social being in the world of well people, I have decided to develop selective hearing. I don’t mean the type of selective hearing developed by husbands (“What? You wanted me to put my dishes in the dishwasher? You never told me.”), but rather, a type of selective hearing that will allow us to hear what people mean instead of the crazy (or hurtful) things people say.

What people say: You don’t look sick.

What I hear: You must not be sick. You look fine.

What I will choose to hear: Holy cow! You look incredible! I don’t know how you continue to look so fabulous when you feel so terrible!

(Yes, I realize I’m stretching the meaning a little. But, if I’m going to alter what others are saying, why can’t I give myself a little confidence boost in the process?)

What people say: Have you tried . . . . (insert diet, supplement, miracle pill, Billy Bob’s Magic Elixir, etc.)?

What I hear: If you really wanted to feel better, you would try whatever goods I’m peddling or method I’m supporting.

What I will choose to hear: I truly want you to feel better, and I’m suggesting thing in hopes that something would help you.

What people say: Have your doctors still not figured out what is wrong with you?

What I hear: If your doctors really knew what was wrong with you, you would be getting better. Doctors fix sick people. You should get better doctors.

What I will choose to hear: I regret that this is a chronic condition with no quick fix.

What people say: Wow, you live like a little old woman.

What I hear: Wow, you live like a little old woman.

What I will choose to hear: Wow! You look incredible (and not at all old!) while battling a chronic illness that has reduced your ability to live like the rest of us.

(Again, probably a stretch, but this is all taking place in my head. I can embellish!)

To my chronic illness friends, there are some people that are just jerks. Avoid them. People who say things with the intention to hurt you aren’t worth your time. Don’t invest what precious little energy you have on those people. The people in your life who truly mean well but say insensitive things, try to give them some grace. They can’t understand, and we don’t want them to ever experience this in order to empathize. It’s okay to gently educate. I’ve lost count of how many times I’ve had to say, “My illness is chronic, so I deal with it every day. Some days are better than others, though. Thanks for checking on me.” It’s okay to gently correct- “It isn’t my doctors’ fault that I am not better. I have an illness that does not have a cure, so all my doctors can do is manage my symptoms.” It’s also okay to just change the subject. “You know, I get tired of talking about being sick. Let’s talk about something that really matters- ‘Is that dress black and blue or is it really gold and white?’” (If you missed “the dress” internet phenomenon, I don’t advise looking for it.) Most of all, don’t burn bridges with the people that mean well. If a person cares enough to bring up your illness, they might be worth keeping around- even if they are a little clueless.

To my non-chronic illness friends, I’m sorry that I’m sensitive. I’m sorry that I misconstrue thing you say into something hurtful. Please keep talking to me anyway. I would rather you say a hundred accidentally offensive things to me than give up on our friendship. Thanks for trying.

Now for the fun part, chronic illness friends, what question or comment do you hear that drives you crazy? If so, share it in the comments.

Peace, love ,and health friends.