This weekend, I was able to get out into public for the first time in a long time. My brother had a small wedding ceremony and some low key activities with the immediate families. I cannot tell you how exciting it was that I was able to make the ceremony and visit/participate and I was so proud of myself for laughing, smiling, not holding anyone back from doing what they wanted to do. I forgot what it is like to be in public when people can tell you are sick – the stares and comments that strangers make. It’s not… fun, but I barely even cared because I was just so thrilled to be able to see my brother get married.
Physically it was very taxing, but, unfortunately, the physical strain wasn’t the worst that happened, but the unsolicited comments friends/family/strangers made about my illness. It was such an amazing weekend otherwise that I don’t want to mar it by complaining about how others treated me, but I decided it was time to address some of the judgements people make and some of the horrible comments people make to me (and I am guessing other chronically ill/disabled people).
Actual comments made to me this weekend (a lot of them have been said in some form or another at other times)
“You are pathetic. Everyone thinks you are pathetic. I am embarrassed for you. It is embarrassing. I am telling you because I care about you, and someone needs to tell you the truth.”
Not only is this not an exaggeration, but it isn’t the first time I have received a comment like this. I really don’t have a rebuttal because these comments are about how others perceive me and I can’t change their mind. I can say that I am fully aware that people feel like this, to the point where I tend to think it is secretly a majority opinion and the people who let me know are the ones who are being honest about how they feel. Maybe I am wrong, but it is one of the reasons I came out on Tumblr as being chronically ill. I’d like to help remove the stigma and, if nothing else, I am tired of being ashamed of it. But I have no delusions. Telling me this information, doesn’t improve my quality of life. I guess it’s good to be aware of how others see me, but it doesn’t change my health to know that people don’t like me being sick.
“You’ve been sick for too da@# long. If I were you, I would change my diet, change my mindset, schedule a new appointment every day. It is time to get better.”
This statement in many forms is actually EXTREMELY common. A few things. I don’t want to be sick. It is not enjoyable to be sick. I had a really good job, a house, a car, a fantastic boyfriend, I got scholarships to undergrad and my graduate school was paid for by my company, I was in really good shape ran/hiked/danced on the weekends, I had what I thought were amazing friends who were in similar situations and all of this was while I was still but not as bad as I am now. Hell yeah I am bragging about my life because I want you to know that I DON”T WANT TO BE SICK. I want my old life back. Now, many days I am embarrassingly dependent on others often for help getting food prepared, sometimes (when it is really bad) for things as simple as water. I have tried diet changes, I have tried attitude changes. I have tried 1000 things and I will try 1000 more. Doctors are not gods – even good ones sometimes just don’t have the research/information available because research takes FUNDING and someone who has the means to conduct and/or fund it whether it be a university or a pharmaceutical company, etc. Chronic illnesses tend to be chronic because there is no cure – yet. There are a lot of doctors, clinics, and other professionals that aim to improve the quality of life of those who are chronically ill. These methods can be expensive, they can be scams, they can be well-intended and work for others but just not for me and they can have some pretty intense side effects. The last medicine my doctor and I tried to use to improve my quality of life had me coughing up blood, vomiting, and peeing blood (never mind the pain it caused). The point to all of this is that I don’t want to be sick, and I am doing what I can and trying to make the best decisions for my health. If you want to offer advice on my health decisions, wait until you are involved enough in my care to make an educated guess.
“You used to be so strong. Now you are just weak. Push through it. You’ll get better if you just push yourself.”
This comment is sort of a combination of the two before. I am going to make this personal again to illustrate my point. I am the kind of person that would tape my broken finger to my normal finger so that I could finish a game of basketball, or would run on a broken foot because I didn’t want to sit out, or would bike up a mountain with a busted knee because I didn’t want to miss the opportunity. I haven’t gotten any weaker. In fact, experts have suggested that I am as bad as I am because I didn’t listen to my body and pushed through pain and discomfort (and keep pushing because – I repeat – I don’t want to be sick). Plus, the scale of what I am dealing with has expanded. Also, some of my symptoms aren’t painful per se – parts of my body simply stop working or don’t work the way they are supposed to. There is nothing to push through (although I try). The point here is people call me weak and I wish they would realize how strong I still am.
There were more – particularly the stuff from strangers, but I ended up writing more than I thought I would. So I will stop here. If you have read this far, I don’t know if it has been meaningful, but maybe my anecdotes have helped with some misconceptions of chronic illness. I did more bragging than I am comfortable with, but I think people need to know that we aren’t less-than-human and we aren’t people who just can’t handle life, we are people who are sick and sometimes, we try to be happy despite our situation and there is no reason to have an opinion about that. There is really no reason to have an opinion about someone else’s illness at all.
Edit: I have some amazing family members and friends not mentioned here and I really need to devote some of my writing to them. So expect more of that in the future!