Living with a person with chronic illness; what to expect
So we’re friends, we get along great and have never had a conflict…all is good and we are both amiable people who should be able to room together. You are also empathetic and know I (or said chronically ill person) have major health struggles. Lets say for the sake of this post that we decide to become roommates and I (or said chronically ill person) is 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. So I will do my best to step outside my life and look from a subjective outsider’s point of view.
I was prompted to write this today because this morning I encountered a situation staying in someone else’s house where I did not meet their expectations of me; I don’t mean this in a negative way on their part at all, only that my life doesn’t flow at the pace of everyone else’s and I am hit with the sharp reality that I disappointment people. You see this morning I was not “up and at ’em” when I was expected to be. Not only is sleeping difficulty just part of my life but it’s even harder in a strange house. Add to that that sleep is like oxygen to the chronically ill and there is never enough. So if I get less than 9 hours everything feels worse: pain, inflammation, brain fog, grogginess, cognitive abilities…everything. And a lack of sleep feels like a slow sinking death.
With that in mind I rolled out of bed at 9:30 this morning aching, feeling hungover (no not from alcohol) and DESPERATELY needing coffee just to be able to speak properly… And was instantly expected to engage. I guess that didn’t go so well because I am sure I came off as unfriendly to the houseguest who had just arrived. But that’s a fact I didn’t even consider until later, but that’s how it goes.
Anyhow, back to living with the I.I. (Invisible Illness) Sufferer.
If you catch me at the wrong time I may seem odd or unfriendly, my schedule is not normal, I am not consistent. Thank God my personality is more consistent than it used to be but I wasn’t alway able to navigate how I came off to others or convey what I meant, or be clear in my head with my intentionality’s…( I have had some catastrophic misunderstandings in the past).
So currently I live with chronically ill family so nothing ever has to be explained, no one disappointments anyone else with unmet expectations, things in the house gets done according to whoever has the energy and nothing is assigned or on a schedule. We undertstand and support each other. But for the healthy person things might be strenuous. Here is what to expect:
They will disappointment you/not meet your expectations:
What would be normal are Shared chores, a house schedule, sharing a bathroom/kitchen/living space, being uncluttered… Basically contributing in equal parts in all the ways a healthy roommate would be expected to; but they may not be able to do so.
This is scary for us because it means you may become frustrated and angry when we don’t hold up “our end”. Having expectations of a shared living situation are fair and everyone should contribute equally financially and physically and show respect; this is the only way rooming together can work. But this is assuming everyone involved is healthy, and living with someone with a chronic illness is not normal and throws a monkey wrench into what could be a happy cohabitation.
We will have a problem with you using chemicals in the house, we will tell you that you can’t use that air freshener or spray that perfume in shared space. We will overrun the refrigerator. We will not clean up right away. We will sleep until all hours of the middle of the day. We will (most likely) be financially strapped all the time due to our overwhelming health expenses. We may appear lazy. We know we’re burdensome 😦
They will not respond appropriately sometimes:
So I am SO grateful that I now deal with this very little since I have been treated for Bartonella on my brain and brain stem, but I used to have a real problem with social situations and communication; with how I came across, with how I understood a situation and having proper emotional responses.
Ugh! This is really hard and frustrating especially when you don’t get out enough as it is due to your energy and symptoms. Being misunderstood and misunderstanding others makes you want to crawl out of your hole even less. Also I have to say that the chronically ill whose brains are affected need a lot of grace; I still deal with many fellow sufferers online and when I get frustrated I have to remind myself that I used to be where they are and it seriously affected my emotions and responses too. I was whinier, angrier, and had a lot of inappropriate emotional responses to things that shouldn’t have been responded to emotionally. People that didn’t know us “before”, or don’t understand that this is what’s going on can’t differentiate between this brain garbage and our personalities (honestly sometimes we can’t either). 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 is being bratty, emotional, childish, grumpy or whatever, 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 and see if they are different on a better day. But this is tricky ground and everyone is different, so tread how you see fit. I just recommend honesty in gentleness and grace.
They may be messy:
Yes that mess or clutter will get cleaned up, but maybe not when you want it to or on your schedule. Please understand we are not slobs because we want to be, we actually feel better when things are clean and orderly, but it takes effort to maintain that. You know how they say that the outside (say, a person’s home) reflects the inside? This is true. We are a MESS on the inside mentally and physically and for a lot of us it’s all we can do to keep any kind of normalcy. You may think we don’t care about clutter or are lazy, that’s not true. For example on a day where 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. I try and mentally imagine getting up and moving and putting things away, and even in my head I can’t put forth the effort. The best way I can describe it is its like you have lead in your veins and everything is so heavy and moving your body takes three times the effort of normal.
And speaking of clutter; we are going to come with a whole lot of “baggage”, because our lives are all about health stuff; 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. Plus pill organizers, zip lock baggies, tinctures, droppers, pill cutters, powders, liquids in the fridge…
And besides that we can’t eat and drink just anything, 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 is a bigger part of our lives than it is for most people, and not necessarily in a fun way. Actually it can be exhausting because we can’t trust things other people make (for the most part) because we don’t know if they used a non-organic veggie (toxic pesticides) or whether it might have been cooked in an oil that we react to, or has a spice in it on our allergy list… (You get the idea).
So the cupboard, fridge and freezer are going to be stocked with a ton of stuff; there is going to be a lot of fresh produce, dairy-free milk alternatives, organic condiments, jugs of water, whole chickens, lots of leftovers (because cooking in bulk means less cooking), big bags of stuff from Costco (because buying organic in bulk is cheaper), hemp seeds, quinoa, spices, herbs, gluten-free items of all sorts… And SO much more.
Oh and lots of cooking means (drumroll) items to cook with! Also be prepared for your kitchen to be taken over by pots and pans, utensils, food storage containers, and (probably): a juicer, a super powered blender, sprouting jar, sauerkraut maker, food processor, fancy vegetable cutter, veggie noodle maker, ice cream maker, and more. But please, use our utensils and our appliances because we will probably want you to eat healthy too 😉
Also if we share a bathroom aforementioned pills may be in there too, along with our bags of Epsom salt, essential oils, rubs and pain creams.
They may have trouble keeping a schedule:
Most people’s live 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 be almost shoved aside and forgotten and the “god” that replaces it is energy and the severity of symptoms on a given day. That is what determines daily life, and for many of us it is completely unpredictable. The yo-yoing is very frustrating we know, 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 that we can decipher why some days we feel downright good and others we have to crawl to get to the bathroom. What happens then is that we drive ourselves mad trying to reconstruct every little thing that we can to have another good day, or we overanalyze with intricacy what could have caused that bad day.
So we will bail on plans last minute, we will let you down, our 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… Oh and 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 HATE this, we don’t want to miss out on life and it adds 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.
They may be anti-social:
*please insert here a lot of what was written above about keeping a schedule, as this overlaps that part by quite a bit and for the same reasons.
But I wanted to add here that sometimes we won’t even feel like talking or visiting with you, our beloved roomie. This again has everything to do with lack of energy and pain levels and nothing to do with you. You see for a normal person the speech center of your brain is not necessarily affected when you are overly tired, but for an I.I. (Invisible Illness) Sufferer just trying to talk and listen and process what you are hearing and respond correctly takes a lot of effort.
Aaaand again we are going to say no to a lot of social events and/or bail last minute.
One thing though that I’ve heard across the board from every chronic illness sufferer is that we don’t want you to stop asking us to things and inviting us. Even if we say no, it lets us know we are still important and we still matter.
They can’t eat that:
By now if you know your I.I. Sufferer friend well enough to move in with them you will also know they have a very limited diet.
Now working that through 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). As for me I have been living with dietary restrictions so long it doesn’t necessarily bother me when people eat food in front of me that I can’t have; my will power has a lot more to do with my own inner struggles and won’t necessarily be effected by what you eat in front of me.
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 fervently to those (and I have heard too many stories) 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, saying it’s all in their head or that they have an eating disorder.. This is disrespectful, cold hearted and controlling on your part and metaphorically it is you lifting up your skirt and flashing us with your ignorance causing indecent exposure of your personality disorder. Sorry that was harsh, and very few people are that cruel, but I have heard first-hand 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”. This has happened to me before also, although thankfully even though I had a horrible reaction there was no ER visit.
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. We want to thank you in advance for understanding and please, continue to enjoy what we can’t.
Their priorities are different:
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 have your health, you have everything. When you do not have your health, nothing else matters at all.”
There is nothing like feeling sick in your mind and body every day of your life to change your outlook and priorities. You may think we are obsessed with our health and how we feel, but honestly when something rules your life to that degree and its 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.
My sister and I have left a concert before 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 some of the joy and caused us to leave before the end because we just couldn’t enjoy it to the degree we would have if we felt okay.
So, sometimes beloved roomie we will have to bow out of things we would like to do, and focus on things we would actually rather not. C’est la vie.
Thank you perspective roomie for reading all this, I hope you are now armed with info and can have some insight into the work of living with the chronically ill.