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7 Things Healthy People Should Know About Their Chronically Ill Roommate

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So we’re friends, we get along great and have never had a conflict. We are both amiable people who would like to room together. You are also empathetic and know I (or said chronically ill person) have major health struggles. Let’s say for the sake of this post that we decide to become roommates and I am financially able to do so. What are you in for? You may think you know, but you usually see me at my best because that is when I see people at all, and what may seem fairly normal from the outside may not be what you imagined when we get into the day-to-day of cohabitation. So I will do my best to step outside my life and look from a subjective outsider’s point of view.

1. They may not meet your expectations.

What would be expected in a roommate situation would be shared chores, a house schedule, sharing a bathroom/kitchen/living space, being uncluttered… Basically contributing in equal parts in all the ways roommates would be expected to. But a sick person may not be able to do so. This can be scary for us because we worry you may become frustrated or angry when we don’t hold up “our end.” Living with someone with a chronic illness is not typical and can throw a monkey wrench into what could be a happy cohabitation. For example, your roommate may have a problem with you using chemicals in the house, and tell you that you “can’t use that air freshener” or “spray that perfume” in shared space. We may overrun the refrigerator. We might not clean up right away. We might sleep until all hours of the middle of the day. We will (most likely) be financially strapped all the time due to overwhelming health expenses. We may appear lazy.

2. They might not respond how you expect sometimes.

Before having some brain viruses treated, I used to have a real problem with social situations and communication — with how I came across, with how I perceived  situations and having appropriate emotional responses. This can be incredibly frustrating especially when you don’t get out enough anyway due to your energy and symptoms. Being misunderstood and misunderstanding others can make you want to leave the house even less. Also, I have to say that the chronically ill whose brains are affected need a lot of grace. When my brain was sicker I was whinier, angrier, and had a lot of inappropriate emotional responses to things that shouldn’t have been responded to emotionally. People who didn’t know me “before,” or don’t understand that this is what’s going on, couldn’t differentiate between this brain garbage and my personality. I remember so often wondering, “What’s wrong with me?” Well, what was wrong with me was literally a viral infection in my brain.

So if your ill roomie seems to you to be having a temperamental day and you think this is not true of the person you thought you knew, you may have to step back and give it a little time and space. They will likely be better on a better day.

3. They may be messy.

Yes, that mess or clutter will get cleaned up, but maybe not when you want it to be or on a set schedule. Please understand we are not probably not messy because we want to be, but it takes effort to maintain that. You know how they say that the outside reflects the inside? This is true. Some of us are “messy” on the inside mentally and physically.

You may think your roommate don’t care about clutter or are lazy, but that’s not necessarily true. For example, on a day when I happen to have extra energy and feel clear in my head, one of the first things I do is clean house, and it feels good and I actually enjoy it! In contrast, there are a lot of days where I am fatigued and I have a staring contest with those few dishes on the counter and no matter how hard I try to telepathically put them in the dishwasher, it just doesn’t work. Speaking of clutter, we are probably going to come with a whole lot of “stuff,” because our lives are all about trying to get healthier, trying not to feel worse, trying to just live. So there will be a lot, and I mean a lot of pill bottles, pill organizers, zip lock baggies, tinctures, droppers, pill cutters, powders and liquid meds in the fridge.

Also, many of us can’t eat and drink just anything because there are a lot of things we are intolerant to that further activates autoimmunity, so food is all about trying to improve health, prevent flare ups and rebuild our bodies. That means food can be a bigger part of our lives than it is for other people and not necessarily in a fun way. So the cupboard, fridge and freezer might be stocked with a ton of stuff, from organic produce to dairy alternatives and everything in between. Also be prepared for your kitchen to be filled with all the utensils and appliances needed to keep up that healthy lifestyle. Also if we share a bathroom, aforementioned pills may be in there too, along with bags of Epsom salt, essential oils, rubs and pain creams.

4. They may have trouble keeping a schedule.

Most people’s lives revolve around one god: time. Schedules, daily duties, social calendars, work, travel… It all centers on the almighty clock and this determines life and how it’s lived. With the chronically ill, time can almost be shoved aside and forgotten and the “god” that replaces it is energy/the severity of symptoms on a given day. This is what determines daily life, and for many of us it is completely unpredictable. The yo-yoing can be very frustrating for you, but even more so for us. Yes, I know I will feel worse if I didn’t get enough sleep or ate something I shouldn’t, but what frustrates the heck out of many of us is that sometimes there is just no rhyme or reason why some days we feel downright good and others we have to crawl to get to the bathroom.

So we might bail on plans last minute, days when we aren’t working (if we work) may begin at noon, and getting ready for something could take hours because we: take a shower, then rest, we get dressed, and rest, we do our hair, then rest… If it’s really a bad day all that getting ready may wipe us out and we’ll bail on you anyway.  Please understand we don’t want to miss out on life and it can add to our malaise and depression and we hate letting people down, but this is reality and has nothing to do with desire or intention, but everything to do with physical limitation.

5. They may not seem very social.

*(please insert here a lot of what was written above about keeping a schedule, as this overlaps this section quite a bit and for the same reasons).* But I wanted to add here that sometimes we might not even feel like talking or visiting with you, our beloved roomie. This again has everything to do with lack of energy, symptoms and pain levels and nothing to do with you. For someone with an invisible illness, just trying to talk and listen and process what you are hearing and respond correctly can take a lot of effort and energy. One thing that I’ve heard across the board from people with chronic illness is that they don’t want you to stop asking them to things and inviting them out. Even if we say no, it lets us know we are still important and we still matter.  

6. They might not be able to eat that.

By now if you know your friend well enough to move in with them, you might also know they have a very limited diet. Now, working that through between the two of you may depend on them and how difficult it is for them personally (as far as what food you eat in front of them and what you keep in the house). But it may be easier for us than you think since it is our normal. I have found that (in a social situation like a restaurant) everyone else is a lot more self-conscious about me not eating than I am.I will say a quick word to those who do not take a sick person’s dietary restrictions seriously by: belittling them, trying to talk them into breaking their diet, sneaking “bad” food into their food, teasing them, and saying it’s all in their head is disrespectful, cold-hearted and it is displaying willful ignorance to not understand their friend’s illness. Very few people are that cruel, but I have heard firsthand of ill people having this happen to them and even landing in the ER due to an autoimmune response because someone slipped something into their food because they thought the person “was faking.” When you have an autoimmune disease it means your body is in high-alert attack mode all the time and there are a lot of food triggers. Thank you in advance for understanding and please, I want you to continue to enjoy the foods I can’t.

7. Their priorities may be different.

For many of us, how we feel is the lens through which we see and do everything. What may seem urgent or important to you on a given day may be pretty low priority for us. This doesn’t demean or downplay your priorities in any way; it’s just that the old saying is true: When you do not have your health, nothing else matters. You may think we are obsessed with our health and how we feel, but honestly when something rules your life to that degree and it’s something you can’t escape (you can’t leave your body), you feel it and carry it and are affected by it no matter where you are or what you do.

A couple years ago my sister and I have left a concert early that we had been dying to go to for months because we just couldn’t make it through to the end due to our pain levels and fatigue. Was this great concert a major priority? Yes. But our health and discomfort robbed us of some of the joy of it.

So beloved prospective roomie, I thank you for reading all this. I hope you are now armed with info and can have some insight into living with the chronically ill.

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Originally published: January 25, 2017
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