Faking Healthy (Part 3) What do you think?

In my first “Faking Healthy” post I explained how many chronically ill patients tend to fake being healthy in order to maintain relationships with people around them who are less understanding about the complications poor health can cause. I explained how these patients feel like they have to put up a wall and often need a break from it because the forced masquerade is tiring. Here, I’ll explore one possible complication from this unfortunate but uncommon circumstance.

A few weeks ago I asked many of you on twitter and several of my personal friends who also have chronic illnesses to answer a few questions. I asked “Where do you go when you need to let the walls down and just exist?” I got several different answers. Online, the bathtub, to a friends house but the most frequent one I got was “I go to bed.” 

Of those who went to bed for down-time/recuperation I asked them if the majority of their time in bed was spent sleeping or reading, watching tv or any other awake activity. Most people didn’t really end up spending time asleep in bed, in fact spent most of it reading, watching tv, thinking or playing with their phones, and those people seem to have trouble sleeping when they do finally go to bed to sleep. 

Now, this is in no way proven or even a real study by any means and I DEFINITELY do NOT think this is the only or even major reason for people being unable to sleep with chronic illness - this is just my idea - but I definitely think there is a link between spending so much awake downtime in bed and being unable to sleep once you actually go to bed to sleep. Remember Pavlov’s dog? If your brain doesn’t associate the bed with sleep how are you going to be able to sleep when you need to? Your brain thinks you’re going to watch tv, read, etc.

So I’m proposing a challenge to all of those who do find they have this problem. It’s just an idea but it may work! 

We need a “safe zone” of sorts. We need a place to go and be uninterrupted where we can let our walls down without being ridiculed or rejected, where we can do whatever we want in privacy without feeling we need to hide. If we can’t change those around us to be more understanding, maybe some of us can find a way to cope.

So guys, tell me what do you think?

Letter to Many People?

I admit, if I had known that blog was going to encourage people, I would have put MUCH more care into things I said and I would have said more. 


Here’s what’s missing:

What we really need is not pills or hope of a cure but love and support. We need people around us who care, attempt to understand and actively try to help - even just by “being there” for the person sick. These diseases make us feel alone because there’s a divide between “healthy” and “sick.” The “healthy” seem to think that the “sick” are making it up for attention and tend to walk out from either frustration with the patient or from the feeling of “i can’t do anything about it.” These diseases are bad enough - we don’t need you walking out on us too. 

If you have someone in your life who is chronically ill and you feel that you can’t do anything about it - you’re WRONG. You may not be able to cure the disease but you can ease their suffering. Let me say that again, that was good…

YOU MAY NOT BE ABLE TO CURE THEIR DISEASE BUT YOU CAN EASE THEIR SUFFERING! 

I want to say something to everyone with an illness who feels they’re alone - YOU ARE NOT ALONE. Millions of people feel this way. DO NOT give up. I know, it makes it worse, it makes you depressed, I understand and I have been there. It does get better. 

I also want to say something to everyone with someone in their family who is chronically ill (whether you believe it or not): I don’t care what the diagnosis is they are not making a fuss over nothing. Your job as someone in their life that they care about (family, friends, boyfriend, girlfriend, best friend,etc) is to support them.

You’re supposed to care about them, to try and understand what they are going through and - what I feel we need the most - is try to go through it with them. IF there are days where they can’t get out of bed - go see them at home. If you live with them (spouses…) jump in bed with them and watch whatever they’re watching.(Side note: DO NOT make it about you and attempt to get sex. That will NOT leave this person feel cared about. More like used.)

Love is an action word, people. It’s time we started acting like it. 

PS To those caregivers who DO get it: Thank you for understanding that they wouldn’t be like this if they got a choice. Thank you for understanding that even if you can’t fix it - you can help it. It’s not so bad when you have someone with you to carry the load.

Source: bclarkson.com

Faking Healthy

Many chronic patients who have been sick for a long time know that people have a hard time being supportive with chronic illness. You really find out who really cares about you enough to be around when things get tough. You find that people would rather blame you for it than accept that you’re chronically sick. They’ll say things like “learn to deal with it” or “it’s all in your head” or “stop complaining, you’re always sick!”

Eventually, you’ll find that these people tend to jump ship out of frustration and don’t come around anymore. They abandon you because they get so angry with what they feel is constant excuses for a made up illness meant to get attention. I know. I’ve done it. I’ve also been the victim of it.

So what do the chronically Ill do in response? Two things: allow them to leave and eventually end up alone or with very few friends or they try and fake healthy. I do a combination of both. I let those relationships go of people that were supposed to be friends and certain family members and I also fake healthy. I fake healthy day to day in public. Every one of my classmates do not need to know what’s going on with me. Once people see you as sick - that’s all they see you as. So a lot of people tend to fake healthy consciously or not in order to maintain certain relationships.

I know I do this and have talked to others who do it as well. We put up a wall around others and act like we’re not tired and it doesn’t hurt. Like everything is fine. But it’s not and if you aren’t sick you wouldn’t believe how much energy that drains from us. There’s a reason that fibromyalgia and other chronically ill patients have a stigma attached of people who stay in bed all the time. The reason for that is partially due to the illness and partially due to this. Sometimes, we need downtime. A place to go where no one will bug us, we won’t be criticized for crying or just to recover from the days activities.

In my next blog I’ll explore my thoughts on why chronically ill people sometimes may have trouble sleeping in days they aren’t in pain.