One thing I can really say about having chronic illness (just kidding I have lots to say haha) is that you learn how to act. We become the star in the story of our lives. We are pro’s at deceiving people with how we really feel and become very careful about who we reveal who we are and how we feel to. In this theatrical number we study normalcy, as to not let on our struggles to those around us. It’s not that we want this, it’s that we start to learn how well society can handle the truth. If we are not careful, we will get burned.
Most people who know me, know I am not one for secrets. I am, for the most part, a very straight forward person. I typically hide nothing when it comes to my medical condition, not even from my work environment. I wasn’t always this way and truth me told, there still are some daily secrets about my health I don’t reveal for various reasons and I will get to that. With chronic illness we have to learn to know our audience and I didn’t realize this in the beginning. It wasn’t long after I started my first job after getting some health matters sorted out that I realized the separation of personal life and work life. I was lucky to have a mentor to guide me through the should and should nots of the professional world. Less than a year into my new job I had to have surgery that would put me out of the office for 6-9 weeks. It was a major surgery. 1 month before I had the unexpected miscarriage. Having two surgeries in 1 month definitely raised some eyebrows with a few people that I worked with, but little did I know it would raise more eyebrows with HR. We had to deal with an external company for medical leave, where we would divulge information about why we would be out, for how long etc. Regardless of a third party, rumors spread quickly in the company and it wasn’t too long until I was put on he radar for health issues. My mentors in the company quickly informed me that no matter what, if HR ever asks questions, tell them the bare minimum and don’t let them know my disease is long term. I was told in the long run this would be used against me. I had to watch my back for being sick. As I moved around in the company in different roles I realized who I could tell certain things about my health to, and who I couldn’t. A few people I worked for, were not appreciative of any time I needed off for my health, insisted I schedule surgery when convenient for them, and that any other time I may have missed should be made up. While it wasn’t company policy, it was certainly policy of my superiors. Other’s were amazing to work for. I could tell them everything and they fully supported me, however I knew my time here would not last. I couldn’t work for a company where I could not be myself. I didn’t belong somewhere where I was a different person at home than I was at work. It’s just not my style.
It took some time until I found the company and the job that I was meant for. I still work there now. It’s only been 1 1/2 years but it’s a job I love and a company I can stand by. I was called my a recruiter for an interview. The job sounded too good to be true honestly and I was insanely nervous about the interview. I was just searching the net for a few weeks scoping out a few job opportunities but had not fully decided if I wanted a new job yet, until they contacted me. The interview was scheduled for two weeks after as they had reviewed my resume and wanted to meet me. A few days before the interview I received a call about a diagnosis. I was told I had an autoimmune disease, rheumatoid arthritis (after a year of treatment turned out to be a mis-diagnosis). My doctor said it was a serious diagnosis and treatments were difficult. I would need to be treated with chemo drugs and it would be progressive, eventually causing disability. After this all sunk in, I called the recruiter to cancel my interview. I couldn’t go into a new company, a new job where I would need to work extra hard to prove myself that first year, and have to be in and out for medical treatments. The recruiter asked me why I was cancelling, and I explained the circumstances to him, along with some history of my health. He asked if it would be ok for him to share this information with the company, and I said yes. I had no problem with it. I figured any company that couldn’t accept me for my disease, or couldn’t have employees they took care of, was not a company I wanted to be with. 1 hour later I got a call from the recruiter he said “they still want you to come in, they are really impressed with your resume, they don’t care about health issues, in fact they have excellent health insurance and programs to help employees with health issues”. I knew immediately I wanted this job. I nailed the interview. It was the only interview where I felt confident with my performance and the way I answered all the questions etc. Of course I have never really felt like I did well in interviews. I was just on my game that day, even with the events that had preceded this interview.
Side story: The day of the interview I checked my bosses calendar at my current job. I already felt so guilty going on the interview as my boss at the current job was a good friend of mine and gave me an amazing opportunity at that company. His calendar said he would be out of the office that day recruiting. Perfect! I would be able to leave early with no issue and head to the interview. My other job was very casual so I would have to change on the way. I decided to get really classy and change into my suit in a McDonalds bathroom. It was something out of a movie I swear. It was quite hilarious. Obviously a guy had noticed me from outside going inside in jeans and then coming out in a suit. As I walked back outside to my car he laughed and said “going to an interview?!” I was taken aback and then laughed and responded “Yup!”. I arrived at the office. I was so excited. It was very modern and there were tons of people there my age. I was so used to working in environments where I was the young one. I was in the waiting area where I met with my recruiter. He gave me the run down and said it would be about 5 minutes until they would come get me. About 2 minutes before it was time for me to head in, someone tapped me on the shoulder. Before I turned around a familiar voice said “You’re in big trouble young lady”. My heart stopped and I froze. It was my boss at my other job. I thought to myself “Oh Shit, this is a consulting company, he is here looking for contractors to help us… SHIT SHIT SHIT” I turned around, with what I can only assume was a bright red face to my boss. I thought “whelp! I better get this job now, because I am sooooo fired!!”. He saw the look on my face just burst out laughing and proceeded to tell me he was also there for an interview. WHEW! Heart attack over and off to my interview. If anything at least when I was offered the job it made turning in my 2 weeks notice easy… because he already knew!
Back on track now. Obviously as noted before I got the job, and feel very lucky to have found a company that is so lenient with my health issues and has even given me the option to work less hours in the week, work from home a few days, and more. Unfortunately not all of us have that luxury. Most of us, if we are able to work, have to continue to tread lightly around the office, and do what we can to not take off as many days as we actually need for our health because we don’t want to risk losing our jobs…plus we need the insurance. It’s a very difficult relationship to have to begin with right? Add an illness and it complicates this relationship even more. There’s some sort of trust factor here. There’s always that one person or two that are skeptical of your health issues, and the truthfulness of the time required to take off to treat it. They think that if you look ok, you must be ok. I get this even more so because I am an attractive young woman. This brings on even more bias towards me having a chronic illness and a significant amount of skepticism, especially from those who may feel intimidated or threatened by me. I never understood this though, people feeling threatened by me… until a colleague of mine explained that my strong personality can tend to throw people off when they first meet me and it’s not until they get to know me that they understand there’s nothing to the threatened by. I guess that’s a compliment? haha.
Getting people to give you that chance to actually get to know you is a whole other story. You have to carefully assess those around you in these environments, and actually everywhere. There’s always a threat of the people that think you’re illness will keep you from doing your job and/or other daily tasks. People at the scent of weakness will accuse your disease of holding you back. Truth be told, people with chronic illness end up working twice as hard just to prove to everyone else they can do anything. We work harder, because we don’t have a chance… most people won’t give us that chance. This is not just in the working world. I get this in life in general. Even from friends and family when it comes to things like activities I want to participate in or even to raising a family. Every one doubts our capabilities. What they don’t realize is that their doubt makes everything harder on us, because it makes us have to do more to prove that we can.
Putting on a face in the work place probably doesn’t sound like that big of deal though. Many people understand that our professional lives and our real lives are almost always separated anyways. So since I am so straight forward and all, who else would I need wear a mask around? Well, everyone. Family, friends, even my daughter. Those closest to me that, know me better than most and have seen me at worst? Yes, even them. I think we all have this fear that our chronic illness will take over our lives, and effect the relationships around us. Whether this is true or not, we find ourselves often telling everyone around us that we are feeling fine. We scrounge up the energy to make ourselves bubbly and act as though everything is great and we are having a good day. However, there’s always this cloud lingering over our head, and we are afraid that if we expose this cloud to others, it will bring them down with us. We expose it every now and then, but for us it never goes away. It’s always there. And we don’t want everyone else to have to know or experience it being there all the time. So, we cope with it the best way we can.
What is my cloud? It’s the kidney disease. It causes chronic pain. This pain is not intermittent. It is always there. It never goes away, not for one second. The pain scale as we all know it, is the 1-10 scale. It’s the question every doctor asks you when you first go in to the office for an issue. My average day or as I like to call them “My good Days” range from a 5-7. These are the days I don’t express my pain to others typically. I can’t remember a day I had where I was less than a 5. On those days I am able to get by with just taking Tramadol prescribed by my pain specialist. On those days my nausea doesn’t effect me too much and I don’t need to take my anti nausea pills. On those days I can make myself function. I can have a day where I complete every day tasks without completely knocking myself out. The Good Days. The days where no one knows and I am able to act everything out as if nothing is wrong.
Then there are the bad days. The 7-8 pain level days. These days come a few times every month. Could be from a stone, or infection, or could just be that I had too much sodium, and/or my kidneys are retaining too much fluid. Of course now with my latest development, it can also be that blood flow is being restricted and I need to keep a careful eye on my blood pressure. If it gets too elevated then I’ll need another function test. The bad days are my vicodin days. I don’t like vicodin days. The pain already is making me nauseated and the medication makes it worse, so I have to take Zofran to counter it. Then the medication knocks me out, and I am not able to function very well. These medications, as many of you know, also cause constipation, so I have to take medications for these as well which counteract my kidneys, as they can dehydrate you. It’s a vicious cycle.
The next level are the terrible days. The 9-10 days. These (knock on wood) do not come as often as they used to. These are the days that require hospital visits. The good days still require a mask to be worn, but so do the terrible days. For the terrible days my audience is the doctors and nurses of the ER’s. Every doctor and nurse in every ER is programmed to think anyone that comes in asking for pain medications is a drug seeker. Even though I have a chronic illness and have the history to prove it, I will be treated as a drug seeker. I have to put on a balancing act for the doctors and nurses. A face and presentation displaying not only that I am in pain (which I am) but also that I am a professional, normal, non drug seeking person, with a chronic illness. Incase you don’t understand this, hop in your car and go sit in a ER for 5 minutes. I don’t know if you’ve noticed but no one is at their best in the ER, especially if you’re in severe pain. You could be keeled over, haven’t showered for days, too nauseated to speak or puking, or just in too much pain to move. The doctors can’t decipher one person from another, because we all look like shit. Of course we do, that’s why you go to the ER. Still I have to do everything I can to pull myself together so they see who I am. It’s helpful to have my husband there to give them all the info he can but that’s not always enough. The funny thing is, if I pull myself together too much, then they immediately will say “well you don’t look like you’re feeling that bad”. Seriously? Like I said, it’s a balancing act. Just so I can be treated. I usually go to the same ER, where my kidney doctor is located and I am able to call him so he can brief the staff. Unless he is personally there, however, I will still get the run around from the ER doctors. Because they know nothing of chronic illness. Most of them have never heard of the conditions I name off to them every time I go in. Therefore, I am always prepared to put on my routine. It’s the only way I’ll have the chance of being treated the way I need to be.
A day in the life huh? If you’re someone with chronic illness you understand. It may not be pain you are hiding, it may be another symptom, but we all hide behind a mask and put on our show. It may be for ourselves but it is often for others. If you’re not someone with chronic illness but you know someone, just always keep this in mind. Every time you ask them how they are feeling, and they tell you they are fine, they are not. They are surviving, they will smile while doing it, but they are fighting every second of every day. Even on the good days, we are all hiding behind that mask.
-Just a Regular Sick Girl