When Chronic Illness is Awkward

Let's face it - sometimes chronic illness is just an awkward topic of conversation, and MS is no exception. As humans, we're typically "fixers." We like to fix things, get the job done, resolve the unresolved issues, find the cure, do the surgery, get the closure. It's super uncomfortable when things are left open, incomplete and broken.

I mean, really - this shouldn't even be a thing, in the world we live in today, with all of its scientific wisdom and medical advancements. It makes no sense that we'd have diseases with no cure yet, especially when we've known about them for so long. HIV, cancer, multiple sclerosis, asthma, Alzheimer's...and the list goes on. Those who find themselves diagnosed with these beasts often face a long road, full of questions, uncertainty, anger, fear, and isolation. There are treatments - drugs and procedures - but nothing, as of yet, to definitively CURE these life-takers.

It's a frustration that I never understood until I got my diagnosis. And it can be downright debilitating at times, sucking the hope out of the air and making it impossible to breathe, making you doubt the heart of a God who allowed you to get to this place.

I have MS. The meds I take only serve to "hopefully" slow the disease progression - but the success rate is only 52%. Not great odds, but better than some of the others that are in the 30's. And these meds don't do anything to minimize my current symptoms. My cognitive function is still affected - whether it's remembering simple daily tasks to being able to think of a word I need during conversation. Legs get weak and wobbly, and I sometimes lose feeling in the lower half of my body during exertion, such as workouts or walking for long periods. Nerve pains shoot through my hands sometimes, down through my legs and into my feet. My damaged nerves send mixed signals to my muscles to contract at the wrong times, and I end up feeling like my calf muscles are cramped, just walking into the store. I always fight vertigo, dizziness, nausea, loss of appetite...some days are worse than others. My meds, and the disease of MS itself, affect the way my immune system responds to infection. I'm constantly on edge around people who have any kind of respiratory infection, cold, strep, flu. Any time I go to a hospital, it's risky. I currently have what we suspect is a really bad bladder infection, and the first round of antibiotics didn't work. So, we're trying to get ahead of it with cultures and tests and more drugs. Statistics show that Urinary Tract Infections are one of the main causes for people with MS to be admitted to the hospital. They cause our symptoms to flare, and they can quickly progress to the kidneys and put our bodies into sepsis, if we don't treat it appropriately and quickly.

I live with the realization that I could wake up without the ability to see. Most of the time, people who deal with vision issues from their MS, find that they see great one day, then just don't the next day. I could wake up with no feeling on one side of my body, having lost my ability to walk or drive. It doesn't mean these things would stick around forever after that; many times, depending on your specific disease course, you can rehab back from these or get some high dose steroids, and your body will bounce back. But sometimes, it doesn't happen that way.

I could develop incontinence, or lose my sense of balance and start falling. Any, or all, of these things could happen, at any time. There is no way to predict the course of this disease, or whether a certain medication will work for you. You just have to take each day and deal with that day as it happens.

And here's where it can get awkward for friends and family...

Our natural tendency, as the family or friend of someone who is struggling with a chronic illness, is to ask "How are you doing?" any time we talk to them. And as someone WITH a chronic illness, I appreciate this question. It shows me they care enough to ask a question that could have a really long, hard answer. Most of the time, though, the answer isn't going to be what they're hoping for..."Feeling great!" isn't going to usually be the first thing out of our mouths. Maybe "Not as bad as yesterday...just really tired," or "Had a rough doctor's appointment...I'm pretty disappointed."

Here's my tip: When you talk to someone who gives you these answers, you don't need to worry about having a solution. You don't need to fix how they feel; they don't expect you to. Just listen. Say things like, "That sounds like it sucks," or "I can't imagine." Don't tell them they need to get more rest or see a different doctor or maybe their meds aren't working or they need to stop pushing themselves so hard. Just listen, and let them know that you agree - these things DO suck. It's okay to tell them that, even though you can't fix it, you wish you could, because you don't like to see them in pain.

Don't assume that they're doing something wrong because they don't feel better. That's just how MS is...and Lyme disease, and Lupus, and Fibromyalgia. You just have really crappy days sometimes, and it's not because of anything you've done. You could be doing EVERYTHING right, and you're still just gonna feel like shit.

Honestly, most people living with chronic illness keep it hidden as much as we can. Chances are, when you see us out and about, laughing and playing and having fun - we're still in pain. We're still trying not to fall over, trying to remember your name, trying to make sure we're close to a bathroom, trying to look full of energy even when our bodies are screaming because we're so fatigued. Most of the time, you'll never know, because we're trying to live like "normal" people...and we have families and husbands and wives and children to raise and jobs to do and houses to take care of. So that's just what we do...

Finally, please don't avoid us. Don't stop inviting us out because we always say no, or we always seem to cancel. Maybe we'll feel well enough to take you up on your offer this time. It could be that we feel okay-ish and won't back out of that girls' night out. Don't stop asking us how we're doing, calling us, texting us...MS is an ISOLATING disease, ya'll. Please know that we don't want it to be that way.

It's gonna be awkward, and it's probably going to be awkward A LOT. But it's OKAY. We aren't judging you...we get that you're trying to figure out how to deal with this, too. It's hard for you, just like it's hard for us...just in a different way. We can be patient with each other, and realize that sometimes, it's just uncomfortable. But as long as we know you're there and you truly care and want to be a part of our journey - then it's all gravy, baby.