How People Treat the Chronically Ill, and How It's Changed My Personality

The hardest part about chronic (invisible) illness is other people: 

- People do not believe you

- People assume they know what you're going through, but don't actually ask or try to understand

- People think you're exaggerating 

- People think you're a wimp (they've been through worse.) 

- People argue with you over what you're actually going through, because your illnesses doesn't make sense 

- People tell you you're not trying hard enough

- People argue with you about your chosen treatment plan

- People argue about your diagnoses

- People talk negatively about you to others, without understanding the truth to talk accurately

- People don't think your problems trump theirs, saying "Yeah but I'm going through this worse thing..." then spend more time complaining about it than listening to you 

- People ignore you and avoid you because they can't relate and you get in their way of being a normal person 

- People who you have explained yourself to forget your limitations or needs

- People simply do not care about your limitations or needs and completely disregard you

...Need I go on?

It's enough to make me want to shut myself away from society. Is it worth the fight to find my non-negative place in society? Trying to simply make a life for myself in society puts others at a disadvantage since I'm like a half-person to them, but am I wrong to try?

The worst part for me is in trying to explain myself to people who really do need to understand, people who I am responsible to. It takes energy to say everything that must be said, energy I have very little of, and is actually needed to be spent on keeping myself alive and healthy. Interruptions, not letting me finish, or dismissing/ arguing what I'm saying take up even more of my very limited energy, which can really strain me. When someone argues with what my needs or limits are, I get so angry that I want to fight. If I fight and argue back, I end up very dizzy, mentally and physically drained, and very stressed. This makes my condition worse and I need to recover. It usually accomplishes nothing. If I shut up and give up, I've found that I've been perceived as "wrong." A loser in the argument. Then I'm not treated according to my limits or needs.  I lose either way.

My point is that when a person has made up their mind about what to think, there's no changing it. There's no winning. In this case, the best thing to do is to remove yourself from this person. It's not always possible, which creates a ton of stress, making the condition worse. Stress amplifies sickness.  

So this is a plead to all of you who are not chronically ill: LISTEN. Listen to the chronically ill people in your life. Assume they're telling the truth. Respect the limits they claim they have. Don't interrupt them. Don't argue. You can't pretend to know what it's like. You can't assume you know their pain well enough to tell them they're exaggerating. You're not a doctor, what do you really know? What is it about their condition that you don't want to believe, and what harm does it do to believe them? 

I know many chronically ill people have an annoying victim mentality. I know many of us just want to whine and complain. I know many of us have weird socially awkward personalities. But did you ever stop to think that we could have ended up this way because we feel like we must constantly fight to be understood? Could it be because no one listens to us, and we can't fit in to a normal person's world? Could it be because we've given up on people, but when someone actually understands and treats us well that we latch on to that person because it's the most love anyone has given us? 

I'm not justifying the chronically ill being overly demanding, rude to "normal" people, or too clingy. But I am saying that how we treat each other goes a very long way in how people act.  

I'd like to give a few of concrete examples. 

1. I get sick from perfume, cigarette smoke, air fresheners, etc. If you argue wth me and tell me my sickness doesn't determine you wearing perfume, you have asked me to leave your life permanently. What if you're a coworker, boss, brother, daughter...? Is your refusal to accept my needs worth one of us losing the job, or never seeing family again?  (I'm saying this on behalf of other people with MCS - I'm fortunate to be in a situation where this issue isn't affecting me too often... but the smoking in parts of my family is an issue for me.)

2. I am unable to work on the first day of my period. I have the feeling I need to explain, because most women do not understand this unless they've been through it themselves. And we're at the problem already: It seems like I'm just a wimp, because other women work through their entire period. I should suck it up and deal with it, right? You're not listening. I CANNOT WORK on the first day of my period. I am not every other woman. I have literally been told things like, "My period is heavy too, just go to the bathroom more often" and "they make pain pills for that." To which I respond, "I get so dizzy and weak that I faint trying to get to the bathroom when I stand up to go," or "I used to take 12 ibuprofen a day for the pain and it wasn't enough." But here I am arguing, exerting the energy, getting stressed and angry, and ultimately hurting myself. Who knows how much recovery time it'll take. I'm already exhausted from dealing with the PMS and worrying about how to survive the first day of my period.

3. I must eat every 2 hours or I can't function and my body breaks down, because my blood sugar isn't stable. I've heard these responses: "Doesn't that make you fat?" "How do you get anything done?" "We'll see if we can maybe accommodate you." Is it worth arguing? No. If they listened the first time they wouldn't question it when I do walk away to eat every 2 hours. It's not optional. Either work with me or get out of my way - this isn't something I can change about myself. (On this note, I'm very grateful that my job is very good about letting me eat when I need to.)

4. Yes, I did get better in this way for a while, but the problem is flaring again. Just please, for the love of God and the goodness of His creation, don't argue with me. If I say the problem is back, it's back. Let me deal with it. You can either help me or let me do what I need to. I'm not going to treat you well if you just stand there telling me my treatments are wrong, I screwed up, or I'm over reacting. I'm in pain, let me address it.

I'm hoping my point is clear: Listen. Be respectful of other people. Don't assume you understand. It's okay if you don't understand, as long as you show respect. I'm not asking you to treat the chronically ill as angels or kings, I'm asking you to not provide obstacles to them working within their limits. 

Thank you.  

Yes, I wrote this post while very angry and suffering PMS. I didn't post it right away so that I could review it to make sure I didn't regret something said in anger. It still holds just as true, and I feel this all needs to be said. It's sad that it took anger to prompt me to write this. What's also sad is that I've grown more and more defensive the longer I've been ill. I used to be a sweet, non-assuming woman who was happy to focus on accommodating others. That part of me has been greatly suppressed by the need to protect myself at all times. I must protect myself from other people's negative energy, their synthetic fragrances, and their total lack of concern for my limits and needs. Yes, I've grown very defensive. I've grown distrustful of others. I myself have become negative about other people due to this defensiveness. I might really like you a whole lot and enjoy being around you, but still distrust you. I might complain, say something in anger, or get super depressed because of other people just being themselves. I know this about myself and I readily admit it. But it's such a challenge for me to be me, and I haven't learned how to be chronically ill AND contribute to my family. 3 years into this and I'm growing more and more jaded and distrusting, not better and better at being chronically ill in today's world.


I don't need you to understand how much it hurts or how debilitating it gets, I just need you to not argue when I say I need something and just let me do it. This isn't entitlement, it's a will to survive.