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.

The Coconut Milk Solution

Coconut milk is a constant problem, but I use it every single day for my protein shakes. I'm living in a place where I cannot buy fresh coconuts, so making my own coconut milk is out of the question. For a while I was buying SO's Unsweetened coconut milk. It was really easy to use, had no sugar or carrageenan, and was inexpensive enough. The problems outweighed the good, though. It is so watered down that there's hardly any nutrition left, there were just enough additives and stabilizers to question how healthy it really was, and I was throwing away the non-recyclable packaging. So I turned to buying canned coconut milk, which is much more expensive. It was organic full fat coconut milk, though, so I thought it was worth it. I loved how thick it made my protein shakes, and how it kept me full longer, but... there's a lot of inconsistencies with canned coconut milk.

I've bought two brands: Native Forest and Natural Value. (If you're looking at the prices, be aware that the prices fluxuate within $10 fairly often. I pay attention and buy when it's cheap, and it can end up being 50 cents per can cheaper than in stores when buying this way. That's several dollars in savings.) Both brands have their goods and bads. Native Forest uses guar gum to keep the milk thick and stable, and that's not necessarily a good thing because the gum can irritate the gut. Their packaging is lined with BPA-free paper so the aluminum might be less of an issue. Natural Value does not use guar gum and it's the most pure I've found, but each can is a different consistency and it tends to form and inedible thick gross layer on the top of the milk.

The problem with both brands is that I never know if the milk will be usable right out of the can or not. Both brands have presented a problem with occasionally having great ready-to-drink milk that pours well, and other times the milk is a solid clump. This is very annoying.

But I have a solution!

What you need is:
- A good blender
- A can or two of coconut milk
- Filtered water (I have an RO filter on my sink)
- Mason jars or a tall pitcher that seals

I have a Ninja blender that works really well for this task.

1. Pour half the can of coconut milk into the blender.
2. Fill the blender about half way with filtered water
3. Blend for a minute, past the milk looking like it's ready. You want to get all the clumps out.
4. Pour it in to mason jars
5. Enjoy!





This method reduces the cost of the coconut milk, works out all the clumps to make it smooth, and thinks out the milk enough to where it's easier to shake a protein shake. It doesn't taste any different, just has a thinner texture. It tastes and feels thicker than SO's coconut milk, so that just shows how watered down their milk actually is.

I typically get one can of coconut milk to fill two mason jars. I could easily think it out more than that and still have good quality milk, but I choose not to because I do want enough of the fat from the coconut milk in each protein shake.

New Lab Tests

What a week. Something suddenly went wrong in my body. Fibromyaliga flares (whatever the root cause, true fibro or not, I'm getting pain,) nerve pain in my feet in the morning, but worst of all: I've felt anemic! I went to the clinic to have a few labs drawn on Friday at closing time, so I have my results, but no doctor has contacted me yet. I do not appear to be iron anemic based on the labs and blood color, but there's something called Macrocytic anemia that could be concluded from my labs. Sanford's normal range (who I went through) is a little different from the other normal ranges I've seen for this CBC (complete blood count), so another company would say a few of my results are even further outside the normal range:



The nurse told me my red blood cells are too large, which is essentially macrocytic anemia. This can be caused by B12 and Folate deficiency. This makes sense in my case, but I don't have labs to show if I truly am low or not. However, I'm told that B6 toxicity is another sign that B12 is too low, and when B12 is low, folate is too low. Because I have not yet spoken to my doctor about my results (weekend), I'm not going to state anything as fact at this point.

My symptoms are:
-Dizzy all the time
-Hard time catching my breath
-Rapid heart rate after eating or getting up and moving around a little bit
-Poor circulation, whites in hands and feet
-Fibromyalgia pain in my feet, shins, elbows, upper neck
-Stabbing stomach pains after eating (but not always)
-Extreme fatigue during day, hard time falling asleep at night
-Poor mental clarity
-Weakness
-Eye pain (usually associated with low blood pressure for me, but I didn't get that measured.)
-Either a fever or low body temp
-Chest pressure (feels tight and gritty)

These were strong enough symptoms that I felt unable to drive, and called in sick to work the past two days. I feel bad about that, but I don't want to be fainting on the job or while driving either.

Since finding out I have vitamin b6 toxicity, I quit the B-Complex I was on and started taking a MTHFR friendly Multi Vitamin and Methyl B12 (predicting that I have MTHFR, which, weirdly, I do not.) However, from what I'm reading, food and supplements are not necessarily enough to get B12 levels up. I have felt like I've been growing weaker since quitting the B-Complex, but that also happened at the same time as winter starting, and winter tends to have a profound effect on me.

I'm also being encouraged to go on an elimination diet for salicylates. The idea of even bothering to do this is stressing me out, but it's bothering me because I agree it's a possibility that I have a salicylate sensitivity. Almonds, broccoli, and caffeine, which are all very high in salicylates, have been bothering me for close to a year. Broccoli and caffeine products (other than tea) are very high in sulfur, though, and I know I have a sulfur sensitivity. If I were to try going on a low salicylate diet I'd be down to eating very very few foods. I'm not sure I can eliminate that much food. I'm already avoiding all grains, starches, nightshades, dairy, sulfur rich foods, and sugar (including fruit.) Avoiding salicylates would cut this limited diet in half. The problem is, salicylate sensitivity symptoms are very similar to what I have been feeling like. That said, I don't like to internet diagnose myself!

At the very least, I want the dizziness to stop.