- I miss the days of having friends who I could just meet up with for a drink and some laughs. With the illnesses (plus the fatigue and symptoms that come bundled with them), I rarely have the chance to leave the house, especially as I no longer drive. My immense sensitivity to both noise and chemicals means that I can’t stand loud public places or drink alcohol. People who know that I’m sick tend to act uncomfortable around me (not all, but a lot), but I do understand, as many do not know what to say. I feel guilty that I can’t go out and visit those I love, but spending an hour outside of my house is exhausting enough to send me right back to bed. I miss my old social life, but the Internet is a nice place to meet like-minded individuals.
- I tend to get irate when someone tells me how much they wish they could spend all day in bed just like I do, or that they wish they could have no job and just live off of income support for disability. TRUST ME, the novelty of bed wears off in about a week and one starts going stir crazy. Think of when you have an extra-long unforgiving flu, except extend that to every day and add more pain, fatigue, and emotional turmoil. It’s not something anyone wants and I wouldn’t wish it on my worst enemy. No one wants to be jobless unless they win the lottery, because living vastly below the poverty line and having to beg for things is humiliating. It’s a hard thing being totally dependent on other people for your survival.
- My bed is my operation headquarters for all the ways that I stay busy (reading, writing, art, listening to music, etc…). I know people aren’t supposed to spend a lot of time in bed, but that is where I feel most comfortable, and I certainly don’t have any problems sleeping! The vast majority of my entire world is my bed. Small world indeed.
- Toni mentioned being envious of people who are more sick than she is, and I must say I have the same feelings sometimes (not that I’m proud of it). I even sometimes prefer when I’m more sick than average, as feeling like death really eliminates the guilt that one has of being stuck in limbo land. With something like cancer (not that I wish it on myself or anyone else…), I may end up dying, but I could spend my money and travel and live a real life even if only for awhile. I don’t get any full days of feeling okay, so I just struggle and struggle with no relief or remission in sight. Instead, I am holed up, mostly unable to participate in the world, and hoarding my disability money in case of something happening to my caregiver.
- On the other hand, some days I am sort of thankful for my illnesses/traumas, as I’m FINALLY making progress towards becoming a remotely emotionally healthy human being, and I wouldn’t have gotten here so fast if I hadn’t hit rock bottom. It will still take a LONG time to get there, as my mental issues won’t just disappear, but I’m slowly but surely fighting the good fight.
- I despise the fact that my illnesses have severely limited my chances of finding a truly fulfilling romantic relationship, as a result of touch being very painful, as well as other parts that I probably shouldn’t pronounce to the world.
- The constant judgment from individuals that my illnesses can’t be nearly as bad as I say they are, as I look plenty healthy on the outside. Sadly, my outside has nothing to do with my physical and emotional state of being, and it is heartbreaking to be disbelieved. It adds another slap in the face to being disabled. In addition, most people seem to think that they are as smart as doctors, and are always telling me that if I just took this supplement or treatment, I’d be 100% fixed. Firstly, I don’t just have one illness – I have many. Secondly, I’ve tried nearly every treatment, supplement, and medication suggested by a multitude of doctors in every field, as well as the Internet, over the past thirteen years. I’ve most likely tried your suggestion and had it fail, so it’s likely a sore subject. I wish more people could accept me as is.
- I used to use my chronic illnesses as a way to further punish myself. I figured if I had to be so sick at such a young age with no relief, it must be because I deserved it. Only after reading Toni’s book and doing extensive therapy did I learn that taking care of myself is the most important part of this whole journey. Mind you, there are still times that I forget this, push my limits, and hurt myself.
- I am forever thankful to have my mother as a caregiver, as she has bent-over backwards to make my life as livable as possible. She takes me to every doctor, does up my pills, acts as my cheerleader, and is an all around wonderful person. I’m also thankful that she managed to get me to a doctor who believed and understood me after a decade of being called a hypochondriac, because the medication that this doctor put me on has given me back some semblance of a life. By moving back into my parents’ house after my relationship fell apart, I have been given the kind of care that I can not provide for myself when alone.
- I used to complain too much about my symptoms (as I’d seem to be having something new torture me every other hour…) and general life hardships, but I started to notice how much it was pushing people away. I’m slowly becoming more mindful and trying to reduce the complaints (tricky when in pain!), as they do not technically help my situation and they make those around me uncomfortable.
This is an uncomfortable subject matter, I’m not going to lie. It’s hard to put some of these out into the universe without feeling some distress. Confessions are a powerful bonding tool though. Can you relate to any of these statements? Do you have any confessions that you want to make about being chronically ill? I’d love for someone to ease my mind about some of them!
P.S. Here is a link to the original article: http://www.psychologytoday.com/blog/turning-straw-gold/201210/confessions-sick-person