- 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!
xoxo,
Annie
P.S. Here is a link to the original article: http://www.psychologytoday.com/blog/turning-straw-gold/201210/confessions-sick-person
Andrea, you are very brave to post this. A lot of this is true about me too so you aren’t alone. Even after 6 years of being diagnosed with fibromyalgia & arthritis I still struggle with chronic illness and all it entails. Sometimes I say “at least I don’t have cancer” but you are right – it’s a limbo. About a year before my fibro diagnosis I was diagnosed with Hepatitis C. That was so different to handle. I did the research, found out I needed to do 6 months treatment and had 85-95% recovery from it. At least I knew if I did the treatment I’d get rid of it. This is such much more frustrating.
Thanks you for writing this – I hope some more of your friends step forward to let you know how they feel differently or the same.
Gerri
Having chronic illnesses myself, and having spent my share of time in bed as well, I can certainly relate to this post. I can also relate to the irate feeling you get when people glamourize your pain and suffering into something they would *wish* to have happen to them, because everyone knows it’s just so enjoyable to not be able to be healthy and active. People are always wishing for what someone else has, and sometimes it doesn’t even occur to them how very lucky they are that they do not have that thing themselves. I used to have a good friend (online), who would say, if someone said, “You don’t look sick” to her, right back, “You don’t look stupid either. But that obviously doesn’t mean much”. I wished I would have the nerve to say that myself when people would tell me how I did not look sick. These days, my main illness is a mental illness, and I really don’t appear sick at all to anybody. They assume that this means I’m fine, but they are quite wrong. Thank you for putting into words what so many of us experience with chronic illnesses, Annie.
Annie – This is an incredible piece. Mine was more lighthearted but you’ve gone straight to the heart of the matter by opening yourself in this way. I cried as I read it. I am so thankful that your mother is such a great support for you and I hope with all my heart that some of your friends come through for you soon. I know how hard that is, but at least I have Tony to keep me company. All my love, Toni
Hello Annie,
You’ve shared so much here, with honesty, integrity and strength. I share some of what you’ve written, and have opened a new wordpress blog to express the truth to those who are willing to hear it among my circle of friends and family. You are welcome to join me there, at http://terrysthoughtsandthreads.wordpress.com
Peace, Annie, is a hard-won treasure. I wish you a safe quest.
Annie, this is an amazing, brave, and honest post – and I very much identify with it. Almost feel as if I could have written most of it myself. Big hugs to you, and much love.
Barbara
Hi Annie,
I’m so glad I found your site through Toni, who is SO generous about sharing things on her own FB page. I can relate to many of the things your wrote about. Lately I have been feeling jealous of people who have things like cancer or Parkinson’s, which sounds crazy to others, but they seem to be more “legitimate” than the things the doctor’s can’t figure out.
I’m going to go and read more of your blog! Thanks for sharing so honestly!
Barb
Love you for putting it ALL out there and for putting you out there too.
Thank you for sharing Annie. You are so brave. I know how you feel having been chronically ill 10 y now. I am glad to know I am not alone in this though I am sorry you are suffering too. I am learning to appreciate the little things rather than wishing for all the things I’d love to do but cannot. I also am working hard to trying not to care what others think. Very difficult. I like to think that there is a greater purpose in all of this and that one day it’ll make sense.
Best to you
Isabelle
That was tough to read. My partner Diane discovered me almost three years ago. Since then, her average level of pain seems to have gotten worse. She suffers from chronic persistent migraines as well as some other physical ailments as well as PTSD from really horrendous childhood experiences. I don’t know what would have happened to me if she hadn’t found me (through Match.com) nor what would have happened to her if she hadn’t found me before her symptoms got worse.
Although I have my share of age-related problems, they are nothing compared with hers. The pain has limited our physical relationship but nothing in this world will ever dampen our love for each other.
All Diane has ever wanted was to be treated as a regular person. She doesn’t ever complain; it took me months to figure out her “code” for her responses when I ask how she is doing. It’s still tough to hear her say “I’m here” in response, because I know what that means now.
I am amazed at the number of incredibly shallow and unthinking people there are. The ones that offer suggestions (at age 56, don’t you think she’s tried everything out there, sometimes twice?), and of course have a difficult time believing she’s ill (as you remarked, she doesn’t “look” ill, whatever that means).
All I know is that I will do anything she wants me to do, go anywhere, pick up anything, without a single word of complaint, without hesitation, day or night, 24 hours a day, seven days a week. If there is ANYTHING I can do to, I will do it. I know, if the situation was reversed, that she would do the same for me, and that is ALL that matters.
I can’t “make her better.” I can’t “fix” her. I have to accept, on a daily basis, that there is damn little that I can actually “do” that will make any difference at all to how she feels. But I am totally there for her in every way I can be.
I remain optimistic that she will have better days, allowing her to do more (recently it’s been bad). But I am prepared for anything.
It must be incredibly difficult, beyond words to describe, to go through what you are going through alone. I suspect you are far from us in Oregon. My heart goes out to you.
Bud
Bud,
That was one of the sweetest messages that I’ve EVER received. It brought tears to my eyes. There should be more men like you in the world. She may not be lucky in terms of health, but she sure is lucky in love because of having you. I’m in PEI, Canada which is pretty much on the other side of the continent sadly, but you filled me with warmth today.
I am sending all the best wishes in the world to you and your lady <3
Annie