Sharing Living Spaces When You Have Chronic Illness

[Stefan Jones]

Hi Kathleen

Meeting new roommates would certainly bring up a few anxieties for me as well.

My main experiences are as living as a student. Hollywood movies are my only reference to what university life in North America is like, so naturally I have no idea how it compares to the UK. In the UK we spend are freshers year in Halls, which are prisons with better wallpaper, and then move into normal privately rented housing. Basically, Halls gives you the opportunity to find housemates for the forthcoming years.

I mention this because it does throw up is own unique challengers. Have you ever tried mopping a floor with 2 weeks worth of beer and sticky drink mixers on it? Or washed the dishes of ten people after they’ve been left stacked up for 10+ days? The elbow grease required left perfectly fit and healthy young guys in a pool of sweat. Sure, we laugh about it to this day, but it’s fair to say they weren’t PH friendly environments.

I did learn one important thing from it all. People are incredibly forgiving when they understand. A heated row easily turned into ‘Stefan’s not doing, I’ll just do it”. And although everything was kept wrapped in a cosy blanket of good humour, such as my role as designated wine opener and pourer, being more important and productive than the cleaning, it can be beyond hard to sit there watching. I guess it slightly plays with your perceived self worth? Not contributing enough.

But I don’t want to give the perception is was always rosy. People do struggle with the idea that chronic illness is 24/7, and you can’t just dial down the symptoms or level of disability because their rushed or stressed. My personal favour is “please, just this once”. Sorry daring, I can’t carry four bag of rubbish to the bins at the top of the street for you, even “just this once”.

As for medication I find Viagra is a great friend. Its ability to kill all complex thinking in even the most intelligent of people is powerful! Who knew that taking “boner” pills could be such an ice-breaker of serious issues. But I can relate to you with the anxieties around oxygen and noise. My PH was in free fall during my first few years at university, went from being able to run in short burst to a 10-30m walking distance. I had never really used oxygen, apart from a few ambulance rides. As a teenager it was an on going joke with the specialist nurse that I’m the only person in world, with PAH, that doesn’t know how to use an oxygen cylinder, and that maybe I should think about learning (yes, they wanted me to uses it)…. Anyway, at the time the progression made me feel that I should start using oxygen but I never did because of the noise and possible perceptions.

Do you find the process of needing to make new people aware of your circumstances can be quite a burden? There can be so much to say, and explain to someone you barely know; often needing to be done quickly. Anxiety inducing thoughts lurk such as, When do I tell them? How much do I say? Do I tell them it’s severe? Or a bit like asthma? Or more like cancer? Personally, I find this kind of scenario to be one of the main handicaps of living with PAH in general, but it is amplified when dealing with people involved in important issues such as living arraignments.

[Brittany Foster]

Hi Stefan,
I’m sorry you were going through all of this in college. I went through similar struggles but was not on oxygen therapy and didn’t require the level of care that I have now. I had various surgeries through college and while some of my roomates were understanding and great about it, some weren’t. It either shows you who your true “friends” are or it shows you the people that you can’t live with. Some people just aren’t compatible to live with one another.

I find it challenging to just sit back and let others do things for me. I live with my boyfriend and my sister in an apartment. The oxygen concentrator is in my room. Luckily it kind of drowns out the noise of my boyfriend’s snoring and he was always someone who needed some type of background noise to fall asleep so it works! I think it’s important to be as honest as possible about good days and bad days and really open up this type of communication with whomever you are living with. Honestly is always the right choice. Not pushing ourselves is also important !

[VK]

Stefan: Just FYI, the early University experiences for North American students are fairly similar. First 1-3 years in dormitories, and years 2 and/or above in shared flats/apartments. I’ve had many of the same (mis)adventures you did. Thank goodness I had a lot more physical stamina at the age of 20 to handle all that crap!

After University many of us live in more expensive cities where we must still share flats, hence Kathleen’s concerns. So very similar to your side of the pond.

[Brittany Foster]

It definitely is very similar to what you are talking about Stefan. I lived in a small dorm with 2 other roomates (literally only one room and 3 tiny closets) for the first two years. The third year we lived on the campus but in a “suite” style that had 2 separate bedrooms (still sharing a room with 1 other person) there were 4 of us all together, a living room area like where the couches and TV would go, a shower in the suite, vanity area with 2 sinks and mirrors, and a small kitchen (without a stove or oven). 4th year (last year) some students chose to live off of the college campus in apartments or on campus. I lived on campus with 3 girls again. I can’t even imagine ever affording an apartment on my own! With the fact that I am on disability, try to make my own money where I can and have a part time job as a writer and moderator, I still would NEVER be able to afford it. Sharing expenses is also something that could get tricky and needs to be agreed upon beforehand! For my boyfriend and I, I pay for utilities and he covers the cost of the rent for the apartment that we are now in. It becomes difficult when I can’t work or have periods of time where I need to take a break from work and don’t have supplemental income. He needs to “pick up the slack” which can be really tough financially and emotionally for me because I feel like I’m not contributing anything. Living situations are definitely more difficult when something is so unpredictable like an illness.