What We Wish You Knew

Not everything is easy to say – especially for someone who battles sickness and pain on a daily basis. But there are many things that we wish you knew.

I ask that you take the time today to read through what so many of us with chronic illnesses struggle with on a daily basis. Help us break that silence.

I cannot speak for everyone, but I do believe this can speak for many:

1.) Sometimes we don’t want to take medicine.

You’ve seen the commercials. We don’t need to tell you the side effects that can come with the medications we  take. Some of us can barely even keep track of the pills we take every day. So when we have a flare up, we dread having to take one more thing. We weigh the pros and cons. We debate whether it’s worth it to take something for the pain and deal with the countless side effects that will follow. Sure, in the moment it’s nice. But we see the effects that can last even days later. The fatigue, the gastrointestinal issues, the brain fog, the nausea, the changes in blood sugar or blood pressure. Sometimes, we rather just bear through the pain instead of dealing with a whole new set of symptoms.

2.) We appreciate you asking how we are feeling, but we don’t always know how to answer that.

Chronic means continuous. How we are feeling varies day to day, even minute by minute. We appreciate your care and concern, but the answer isn’t as simple to come up with as you might hope. So when you ask, our minds immediately race for the best answer. If we say we are fine, it will seem as if nothing is wrong at all. It may even sound as if all our health problems are gone altogether. But in reality, we don’t want to have to explain all the details, and we don’t want you to have to endure that kind of conversation in a casual chit-chat. Things comes and go. There are good days and bad. But we are still thankful that you care.

3.) Sometimes we need to sit.

We completely understand chivalry and letting others come first. We are not selfish individuals. But sometimes we need to sit too. We may not be elderly. We may not have a visible disability, but that doesn’t mean we aren’t suffering. Sometimes, we can’t trust our own balance. Sometimes the room spins around us at random. Sometimes we feel too weak or in too much pain to even support our own bodies. We try to stand proud and strong. We try to be courteous and selfless. But in truth, we’re dying to be offered a seat.

4.) We need rest more than others. And we don’t want to feel bad about it.

Again, chronic means continuous. Our bodies are constantly working overtime to keep things running as healthy as possible. It doesn’t take much for us to feel worn out. The problem is, we tend to always feel guilty or lazy for resting. We know our issues are invisible. We know we may look fine to others if we’re not showing full blown symptoms. But our bodies work differently. And we have no choice but to listen to our bodies and do what they need us to do – or else, pay for it later. And don’t think we don’t wish we were doing something more visibly productive.

5.) We don’t just “Google”.

More times than not, our health is disregarded or misdiagnosed. Far too often we are brushed off by the medical field. Because we are far too rare of a case, we are simply taken as not being a case at all. This in turn leaves us no choice but to become our own advocate. And as our own advocate, we spend countless hours researching everywhere we can to find answers for our specific issues. This is our health, our bodies, our life. We do not take this issue lightly. We do not fall for the first google article that pops up. In fact, most of us could probably have a degree in our condition. We aren’t hypochondriacs. We are just determined to find answers.

6.) We often have two choices – say no and miss out or say yes and grit through it.

If we aren’t already in the middle of an episode, we’re anticipating the next one. We’re afraid to commit. We’re afraid to make plans. Trust us, we want to. Even the greatest introvert in our chronic community gets tired of staring at their bedroom ceiling after so long. But we are often left with only two choices. We can accept our illness, decline invitations, and feel miserable about missing out on life. Or, we can say we have had enough of our illness controlling our lives and then grit our teeth through the pain during the invitations we accept. Sure, there’s a chance that we may have a good day, but odds are we wouldn’t speak up either way.

7.) We want to be as invisible as our illness.

We hate pity. And we hate attention. We didn’t ask for this condition or for it to turn us into someone we’re not. So when an episode hits, we just want to be as comfortable as possible without eyes staring at us. We need you to be there for us because we have so much trouble functioning on our own, but we really wish we could be invisible at the same time. Bring us a cold towel, maybe a bottle of water, but please ignore us hunching at the bedside, bracing through every wave of pain that hits. We never wanted for you to see that side.

8.) We’re sorry for snapping at you during our episodes.

Pain and sickness are not easy to be distracted from. In reality, it’s hard to think of anything else during a flare up. So when anything else is added to our plate, even just a simple question, it can feel quite overwhelming. We are already tired of dealing with ourselves, much less one more thing. We don’t mean to snap at you. We’re just already so frustrated in wanting it all to end. Since most of our mind is on our pain, little if any of our mind is truly thinking of what comes out of our mouth. So please know that we don’t really mean what we say or do during our tough times.

If there is something you wish others could know about your health, please feel free to comment as “Anonymous” in the Comments section below. Email addresses will be kept confidential.