Chronic Illness and Reliability

I’m not reliable. I’m not present.

I have a chronic illness and have been very very sick in increasing ways the past two years. Last Spring, I was diagnosed with one rare disease, Ehlers-Danlos Syndrome, which is all about joint issues and chronic pain. I have had a chronic cough for 9 months now and it has led to an ER trip and most recently 2 horrible weeks off work due to illness. Doctors are still unsure what to make of this cough as tests keep coming back negative but I keep getting worse and worse and medication is not able to manage the issue. One more attack like last week will land me in the ER and on short term or even long term disability. A person cannot function with a cough that bad along with EDS. I literally dislocate from coughing. I also am at risk of a lot of complications from this cough that are potentially and additionally life threatening.

I’m not reliable because my illnesses are changeable. I could be well one day and unwell the next. Or, as has been the case more these days, unwell one day, but really really unwell the next.

You gain a new normal with this sort of issue. My 100% energy level is probably about 50% for you. My 10 on the pain scale is probably 20 for you. Probably as a result of this, I haven’t gone to the ER when I should. Chronic illness really changes your perspective on things. My reasoning last week was that I *could* walk to the bathroom so I must not be that bad, but in reality, I should have gone to the ER and any other person would have, because they struggled to get to the bathroom. Chronic illness also makes you feel like a bother to doctors as they struggle to diagnose your issues. You can also develop a fear of doctors, because they often treat you as if you are making up symptoms or must not be doing something correctly or are lying or exaggerating your symptoms. Often I get dismissed because of my weight and shamed into not taking my health seriously. Often I get dismissed by specialists because I don’t go into the ER and I make it to my appointments. It’s always always always a Catch 22 experience with chronic illness. Always.

I’m not reliable. I cannot be counted upon. Not in the ways that society defines Reliability and presence are so wrapped up in each other. If you are present at an event that you said you would show up at, you are reliable. I’ve struggled these days with even saying “yes” to anything, including events at my own home. I push for energy on good days. I push through pain and respiratory issues.

My “yes” has changed to “maybe.” Which is a “no” to so many people. An unreliable person. A person who isn’t present.

I deal with a lot of guilt on a daily basis because of this issue. I don’t feel like a present member of my community. I can’t participate in person. Events that have an online aspect rock my world because I know I can do them. I can take part from my home and not have to worry as much, because I can log into the laptop or on my smart phone. But if it includes talking or being present on camera, my enthusiasm differs. I don’t know if my cough will make it difficult to speak or not.

I don’t feel like a good blogger. My concept of good blogging used to be every couple of weeks at least with every week at best. But even with a selfie stick and indoor picture or mirror pictures, just taking pictures in the outfits I make is a lot of work for me these days. I haven’t been here for a month because my energy went toward planning and throwing a birthday party for my husband and then being horribly sick the past few weeks afterwards. I have made things. Several things actually, but I don’t have the energy to share except for a picture on IG here and there.

I don’t feel like a good pattern tester. I have had to drop out due to sickness. I’ve also informed the pattern designers that I tested fit and didn’t have time to thoroughly look over the instructions, but did follow them. I usually try to read through them several times.

I don’t feel like a good friend or a good family member. I miss shows. I miss birthday events. I miss occasions, like baby showers. I send mail more frequently these days, though, but sometimes that is slow to come, too. I may not call to wish you happy birthday, but a text message or FB message is what I can do.

I don’t feel like a good wife. I miss my husbands events. I barely see him on stage. I don’t feel as supportive as I wish I could be.

I am reliable. I am present.

It’s different from what most people want or society deems acceptable.

I live mostly online these days. If I like your post on any social platform, it means I am present. I am here. I care about you. I’m using a precious part of my energy to put it out toward you and say, “hey, I care.”

Most people would think that is nothing, but to me that is everything.

I’m available best by email (contact form), IG direct messages, and Facebook.

Advertisement