It Consumes My Time, But It’s Not Who I Am
When living with a chronic illness that is often all people see in you. However, we know that it is not a lifestyle that we choose or wish to participate in. All too often the reality is that our illness becomes our personality, our lifestyle. It becomes who we are instead of something that we are forced to overcome.
Just because you have a chronic illness does not mean that is who you are. I remember the old joke if you look up the definition of cool it would be a picture of you! Well, Webster better add a mirror under bad ass because that is certainly you!
Now Hiring: Full Time Chronic Illness Associate
I know it feels like you are buried under medical bills, never ending phone calls, case managers, prescriptions, and doctor’s appointments. To top it all off, you are dealing with all of the above plus fatigue, side effects, and which other ailments you are unfortunate enough to experience on a daily basis. It’s like sinking in quicksand, when you feel like you finally reach out for a hand, you slowly sink back in. You can’t ever climb out.
Managing chronic illness is a full time job on top of your already full time job. Just take a step back to recognize how hard you work and how amazing you are! You not only manage your illness and its baggage, but also your household, your career, and maybe even a family. Take a step back, take a deep breath. Be proud of yourself.
The REAL Definition
This illness does not define you. It’s just some lagniappe that comes along for the ride. Yea, it is there, but it is not who you are. After my slate was wiped clean, and all that was left was a brand new life changing illness I had a hard time finding myself outside of PAH.
Every time I saw someone new after my diagnosis, the first question was always, “how are you feeling?” “Is your medication working?” “Can I see your pump?” It goes on and on and on. I often tell myself these people genuinely care about your well-being, don’t get frustrated. However, it’s so monotonous and exhausting answering the same questions over and over again.
Also, I am a human with a personality outside of this disease. Is there anything else about my life that is of interest? I feel like that’s why most of us always say “I’m good” or “I’m doing okay” Just to pacify everyone. It is just easier that way.
Trust me, you really don’t want to know the truth. Oh, you do? Well you better sit down and grab a glass of wine.
Finding Myself Outside of My Chronic Illness
I have lived with other chronic illnesses, but PAH was new, serious and occupied all of my time. Also, it is terrifying! What would you do if you were 31 years, and told you were in heart failure? My life as I knew had to change drastically. How do you start over? Being diagnosed with a life changing, incurable illness in the midst of grief and trauma was by far one of the lowest points in my life.
When you lose pieces of yourself to an illness out of your control, it is incredibly hard to find light and joy outside of that illness. It takes up all of your time and energy.
I lost my health, my job and my child, which was my whole entire world. Left with no idea where to turn next.
Anyways, after feeling sorry for myself (which you are certainly allowed to do) I was ready to do something, anything. I was too type A for my house to be a mess, but too exhausted to do anything about it. Finally, I made a move and started small with a to do list. I would set a goal to get my list accomplished by the week’s end.
Picking Up The Pieces
It was very basic, I couldn’t set my standards too high. It consisted of washing my face and brushing my teeth each morning. Making myself one good meal. Then continued on to whichever tasks really needed to get done. This ranged anywhere from doing the dishes to applying for prescription programs so my thousands of dollars of medication could be covered. Overwhelming was an understatement.
I began to find pieces of myself that were still left. My mind was a mess. I would bounce from one idea to the next, and couldn’t commit to any decisions. I tried paint by numbers…which was a joke for me! It felt like time was ticking as I anxiously attempted to find some kind of new craft that could earn income. In time, I was able to turn to journaling, and my old favorite hobby, cooking. Welcome to the end result!
DO NOT let this illness define who you are. DO NOT let other people assume you are your illness. Be easy on yourself, and do what you love. No one else can do what you do.
My Chronic Illnesses
I am determined to not let these illnesses define me, rather be an example of what I am capable of overcoming. Click the pics below for a quick recap: