Wednesday, July 19, 2017

Secondary Burdens: My Chronic Illness Impacts Everyone

Life with chronic illness leaves a lot to be desired. For lack of a better word, quite frankly, it sucks.

Tomorrow my family and I were supposed to drive the twenty one hours to Minnesota to see the Mast Cell Disease specialist. I was really looking forward to it. In a way, it was like a mini-adventure. There were also a few health matters I wanted to pick the doctor's brain about.

Unfortunately, it is believed that I am trying to fight off a virus, which is causing my mast cells to be more finicky than usual. Because of the flare I am in, the trip was canceled. The breaks of the rental car were put to a halt before we had a chance to back out of the driveway.

It is understandable though. I am running a temperature and it is not wise to leave for an out of state appointment when beginning the trip unstable.


A temperature bouncing up and back down indicates my body is fighting. But before the appointment was declared null and void, there were decisions to make. Should I go or not? If yes, were there any extra modifications to employ to ensure the trip went as smoothly as possible? 

It left me weighing the pros and the cons. The goal of the appointment was obviously to better my health. Regardless of that, there are consequences. The drive is long, it is costly, and the trigger exposure from staying in hotels is immense! These consequences are increased tenfold when flaring from the virus.

Being sick is inconvenient. Simple trips need special planning and accommodations. This burden is amplified since having a severe Mast Cell Disease. Every single aspect of life demands thought. The trip entails more than accounting for extra rest and the packing of medical supplies. It is not uncommon to have my family and I arrive at the intended destination only to have to leave because I have allergic reactions to the hotel: cleaning products, smoke, perfumes, oils in the rooms, sheets, etc. And do not get me started on bathroom stops. The benefits of the appointment are likely not worth the risks of these unforeseen circumstances, while already flaring with a virus.

I had to sacrifice not going because I am aware that my body is in no position to handle it. To contribute to my less than cheerful mood, recent events have highlighted other sacrifices as well.

Chronic illness inevitably requires sacrifice on the patient's part. That is expected. I am not fond of the concept. There is no escaping it though. However, the sacrifices extend far beyond impacting solely me. It effects everyone involved in my life.

While I cannot eat, my friends and family cannot eat or cook most foods around me because of my airborne reactions. After coming home from work, from being out in public, or eating, they must shower and change clothes despite probably having showered twice that day. I cannot wear perfumes or use scented products, nor can anyone in near proximity.

My illness also interferes with their plans and goals. It is not as easy for them to just omit my illness from their plans. Exacerbating my condition with the added triggers that could be avoided causes their life to be increasingly difficult, as their roles as mother, father, partner, or friend must double as nurse when I am too sick to care for myself.

It is upsetting when my health prevents me from living how I would like and intrudes upon even life's seemingly trivialities. I am thankful that the people in my life love and care for me enough to consider me in their decisions, but I hate realizing that they are enduring similar emotions as a result.