The Quarter Life Crisis Chronicles Volume 3: Illness Is Not Exclusive To Old People #beingsicksucks
Hello! Welcome back to The Quarter Life Crisis Chronicles. If you have not guessed by now, we will be talking about a pretty heavy subject. The topic of Chronic Illnesses came to mind a few months ago as I came to the conclusion that it was time to do something about being a few internal issues I was having with my body. As I was setting up an appointment to see a specialist, I saw a very personal post from our interviewee on Facebook. In this message she spoke about her illnesses. This was not the first person I had seen this from, but this was the first time I read something so raw and honest. One in six adults have a chronic illness, many of whom are under the age of thirty. But we as a country have a tendency to view illness as an old person thing. With that being said, what does it mean to have a chronic illness as a young person? Let’s find out.
Me: Hello interviewee, let’s start with an introduction of who you are.
Elana: My screen name is Elana, I am 23 and I joke that I am a stay at home sick wife.
Okay that is a tad dark but super funny.
Me: What is appropriate to say?
A) A person with a Chronic Illness
B) A person who is sick
C) A person with a disease
Elana: The politically correct term is 'Chronically Ill' so I guess A?
So let’s take a quick second to talk about what is a Chronic Illness. According to the CDC, chronic diseases (chronic illnesses) are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. 6 IN 10 Adults in the US have a chronic disease. 4 IN 10 Adults in the US have two or more.
Me: If I were to look at your chart, what would it say?
Elena: EDS (Ehlers-Danlos Syndrome)
POTS (Postural Orthostatic Tachycardia Syndrome)
I am currently still going in for testing and there a few things I am being treated for Chronic Lyme Disease but there are a lot of things that are still up in the air.
Me: Can you tell the readers what this means?
Elena: EDS is a connective tissue disorder. Most who have this find it out because then have dislocations of joints often enough that doctors pick up on it or they qualify by the Beighton Test. I've only had my jaw that dislocates and I have weak knees, ankles, writs, back and just about every joint in my body and with that comes a lot of complications including pain and instability. I constantly feel as if I have growing pains.
POTS; Laying down my heart rate is about 60BPM and sitting up it can be 70-80BPM and then standing especially when I first stand it can and has jumped all the way up to 180BPM.
Me: How did you figure out you were sick?
Elana: My husband was the one to point it out and really be concerned about it, but I thought something was wrong with me in late high school but only because my back hurt all the time. However I should have known something was up with all of the other symptoms I had at an early age; bruising easily, 'heat rashes', knees and ankles that always seemed to be hurting or injured, clumsiness, my vision going black when I stood up, getting winded from just walking up the stairs, painful menstrual cycles, migraines and those are just the ones I can think of...
Me: How do you explain your disease to other people?
Elana: Well it depends on how long they are willing to talk to me about it all. There is a lot of information to give and I try to educate as many people as I can because everything I have can be caught easily and at home, and caught early can help so many people.
Me: What does your day to day look like?
Elana: It depends on a lot of things...
My sickest days I have been in bed desperately trying to sleep off pain, or unable to stand from pain and some days just the POTS, other days I am just too tired and need the extra sleep. But even on my sickest days I leave the house sometimes to go to disney or my in-laws house, I have a wheelchair for those days.
My good days I try to get out of the house but that does not always work out as my husband is not always home to go out with me.
But the middle days I am on my computer or cuddles up with my sailine drip and eating food.
Me: How often do you find yourself at a medical office?
Elana: Depends on the month, one month I had 11 medical type things scheduled but for a lot I don’t have to leave my house. I have a home nurse that can/does come and he does blood drawls and dressing changes for my PICC and than one of my doctors I talk to on my computer kinda like Skype. I also have physical therapy once a week.
Me: What kind of limitations have you encountered?
Elana: Mostly just walking, bending down, endurance and remembering things that happened recently. I can have a lot of brain fog.... My husband takes care and comes with me to all my doctor appointments because I forget a lot of what I need to talk about.
I also can't shower alone as I currently have a PICC line and need my husbands help to wrap my arm and with my POTS I need someone to watch me and help me dry myself and wash my hair.
So before we get into the next question, I wanted to provide this statistic to you.
“Chronic Illnesses are the leading drivers of the Nation’s $3.3 Trillion in Annual Health Care Costs” - CDC
Me: If it’s not too invasive, may I ask what kind of financial to this has taken on you?
Elana: Without insurance the expenses came to $100,500 (rounded up and only between August 1st- December 31). With insurance $3,000 (rounded up and again only between August 1st- December 31)
Me: Again, if it’s not too invasive, how does having this illness(es) effect your mental health?
Elana: Some days are good but others I break down.... I feel its hard in a different way then someone who's born sick, or with a chronic illness because I had a 'healthy' childhood as far as I thought and then one day I am in a wheelchair just about every time my husband and I go out. I mean now I don’t but for a few months I was.
It is estimated that up to one-third of individuals with a serious medical condition have symptoms of depression. - The Cleveland Clinic
Me: What is the hardest part about having a chronic illness?
Elana: Getting over the fact that I need a wheelchair sometimes or needing to take things slow because I can't push myself.
Me: How do you view yourself?
Elana: I try not to think about that. Vary hard question...
Me: How do people view and treat you after finding out you are sick?
Elana: Depends on the person, most people are interested in knowing more, some act as if I did not tell them and some....well some find out in a rather direct way. I had a lady once ask how I stayed so thin and I, with a poker face, said flatly "I am sick". Living in florida and having a PICC line most people can tell I have something up with me because I wear short sleeves all the time so when going to business things with my husband they can sometimes avoid shaking my hands.
Me: What makes you feel better?
Elana: In terms of mentally or physically? I am a home body so if people come to stay over and interact with me in my house I get joy from that, but in terms of my illness IV bags of saline do the trick.
Me: What is something actually helpful for people to say to you?
Elana: There is really nothing you can say, a lot of what I have is genetic and has no cure. Just stop saying sorry to me! Its the most annoying thing at least to me, but if you don't know what to say just say that "I dont know what to say to that". Then that gives me a few options to ask if there is anything you want to know or just to change the subject.
Me: What advice do you have to friends and family members of those with a chronic illness?
Elana: There are some days where it looks like nothing is going on and sometimes its true but other times it could just be that they are having a really good mental day and are still struggling. Be patient and try to be understanding some illnesses are easier to describe then others and some illnesses come in waves, or spurts we can have 2 amazing weeks followed by 3 months of bad days, or 2 good days one bad day followed by 3 even worst days just to have one more good day.
Me: What do you want people to know about what it means to have a chronic illness?
Elana: It really F#CK!NG sucks. I have to add things to my day that makes planing more frustrating and harder. But with finding out I have been able to feel much better and I feel closer to the way I did back in high school just with a lot of weekly complications.
Me: What advice do you have for a person who suspects they may have a chronic illness?
Elana: Do the research, jump into it and get help. The sooner you can start treatment the quicker you can make your life easier.
Me: What advice do you have for a fellow sick person?
Elana: Stick up for yourself, know as much as you can about your illness and if you don't like what a doctor is doing or thinking about doing for your treatment speak up, get a second opinion, at the end of the day it is your body and your choice, I view doctors like servers, yes they went to school but you are the one who are supposed to bring you options and to serve you to your needs, and if you don't trust them you should leave.
I did not want to leave this on a heavy note, so I decided to ask a few lighthearted questions. It probably should’ve been stated earlier, but Elana and I grew up in the same col de sac and go wayyyy back. This will make sense when you keep reading.
Me: How often do you go to Disney?
Elana: Too many times to count, some weeks we go 4 times a week other times we don't go, but I'd say at least 5 times a month.
Me: What’s your favorite col de sac memory?
Elana: I have two that I hold onto dearly, walking into your house and seeing your parents and I think there was crying
Then the time that I did not tell anyone I was coming and Ansley got so excited she screamed and tackled me.
Aside from getting married and coming into my husbands family, I've never felt more love then my summers with your family and spending time with my friends there. I really want to do a little get together and have everyone meet him and hang out again IRL one last time.
Me: How was getting married?
Elana: Amazing.
Me: What’s your favorite thing about your life?
Elana: My husband and his family, I've never had this much love and support as I do with all of them. I don't know how I survived so long without them.
I would like to take this time to thank Elana for her candor. It is never easy to talk about something so personal and intimate. If you believe you may be a little sick more often than normal, take Elena’s advice and “do the research, jump into it and get help. The sooner you can start treatment the quicker you can make your life easier.” I want to end this by giving you the link to the National Organization for Rare Disorders. This is Elana’s charity of choice.
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