[tecomsin]

I feel like no one in the world understands what I am going through. i have two highly stigmatized illnesses. One is bipolar and the other is lung cancer. Maybe i have been cured of the lung cancer but the side effects of treatment persist. I also live with the possibility of recurrence and that I might die a horrible death.

I don't post about my mental illness on lung cancer forums, because of the stigma and I feel that I would just end up isolated, discounted and shunned. I don't expect people here to understand about cancer. In fact I have read posts about how some people wish they had cancer, which makes me feel even more isolated and alone.

[Wild Coyote]

I am sorry you are feeling so isolated.

I often feel similar. My medical conditions are not well understood, even by the medical community. I have several disabling, chronically painful conditions and I often feel alone with them... including with my BP illness.

I'd hope that coming here might help you to feel less alone; yet, it seems like maybe not so much? I am very sorry!

Big hugs!


WC

[tecomsin]

Thank you WC for posting. I was hoping to hear from you. I am sorry you have chronic pain. Often times these are called syndromes rather than diseases because they are so poorly understood, and that experience is so isolating too.

If I go into the cancer centre I am followed by security. If I go out into my lawn then one of my nosy neighbors will text me asking if I am feeling ok. She is the main one who has been calling the police about me over the years. Every day the police aren't banging my door down, like they did last year, I am grateful for that. So I stay mostly indoors and away from other people because i am afraid of them. I am not unhappy to be alive but have no pleasure in life except for my son,

Sorry for the rant. It's a grey cloudy day and we have had snow, believe it or not. Maybe that is contributing to my down mood.

Thanks for hearing me out. I had a bad experience on one of the threads on pc where someone was writing about how they wished they had cancer. When you see the suffering people go through it isn't something to wish for. It seemed to me to be totally trivializing what it is like to have a deadly cancer.

Also some people get alot of attention on pc and others not so much. That's human nature and not much to be done about it.

[Blueberrybook]

I am sorry you feel isolated

I feel stigmatized too. I haven't been through cancer, but I am practically a walking DSM-V with all the diagnoses I have. I don't talk about the severe anorexie with anyone much. People from my high school class never knew it happened. A few might have gone to the same university I did, but it's huge, and they likely had different majors and classes, and that is when it was really, really bad. Family who do know about the time I weighed so little watch me like a hawk to see what food I put on my plate at family functions, and the time I recovered from the worst the ED ever got was in 2000. 18 years and they haven't let it go. I've had 2 relapses, one in 2015 (bad but got over it fairly quickly) and the present (not as bad as 2015). But I hate family functions outside of my husband and daughter. They always have to involve food.

And when I say I've got anorexia, people can choose to ignore it if they live with me, like H, he just sees me taking out all my anxiety by exercising. I can't even have the normal restricting type anorexia people picture when they think of anorexia. And when I say it's purging type, they think of making myself throw up. So it's a really stupid version of an ED a lot of people can't understand because they do not see it. It's practically silent unless you look at the scale.

Just like I had to get a silent ulcer that perforated and required surgery. No one, except a person who has been through perforated ulcer surgery can even imagine how awful that surgery is, so much pain, not even morphine helps (and I'm talking morphine shots on top of a morphine pump). Pain so bad (or so much morphine), I straight out hallucinated nearly 2 days. Unless you have been there, you just can't know. Now I've got a 4 inch surgery mostly healed belly button & up, though one area is thicker and insists on healing more slowly. It doesn't look so bad. Some people expressed jealousy at my quick weight loss. I lost 10 lb. in the hospital due to the way they treat these things post-surgery. I mean, you just have an IV, ice chips, and water only to swallow medication for 5 days straight (that was on the short end, so I was lucky) and nothing else. Really, if my daughter hadn't been here & able to use the phone, I would have died from it.

I post about the ulcer thing from time to time on Facebook from time to time, but people just can't get it. I don't post how the ulcer stuff affected me mentally because it did. It's a PTSD type experience I remember every time I hear sirens, see an ambulance. Ugh. I never post about my MI issues except on mental health forums, one ED recovery forum that has slowed down a lot of late.

I am sorry you are feeling down. I'm always here lurking, listening and hoping the best for you. I saw the thread in question and found it triggering as my mom passed from cancer. I wouldn't wish that on anyone. I hope you feel better.

[BipolaRNurse]

My husband died from pancreatic cancer, so I hate the disease with every fiber of my being. I'm so sorry you're dealing with cancer too, and hope your remission is a very long one. Hugs.

[Movingon69]

I want you to know I do understand. I had colon cancer at 17. At that age all my "friends" rallied around me at first but once it became a drawn out thing they were much more interested in their social lives than visiting me. I finished my last year of high school from the hospital. Even though that was over 30 years ago I'm constantly afraid I'm going to hear the "C" word again.

I'm sorry you are feeling so isolated. I would encourage to post about your struggles of both here because the stress of the lung cancer has to impact you MI

[tecomsin]

Originally Posted by BipolaRNurse

My husband died from pancreatic cancer, so I hate the disease with every fiber of my being. I'm so sorry you're dealing with cancer too, and hope your remission is a very long one. Hugs.

I'm sorry to hear you lost your husband to pancreatic cancer. It's a cruel disease.

I was operated on and then I had 16 weeks of chemo, which left me with a painful neuropathy and hearing loss and a really pronounced fatigue, but I am alive... Thank you for sharing BipolaRNurse

Originally Posted by Movingon69

I want you to know I do understand. I had colon cancer at 17. At that age all my "friends" rallied around me at first but once it became a drawn out thing they were much more interested in their social lives than visiting me. I finished my last year of high school from the hospital. Even though that was over 30 years ago I'm constantly afraid I'm going to hear the "C" word again.

I'm sorry you are feeling so isolated. I would encourage to post about your struggles of both here because the stress of the lung cancer has to impact you MI

Thank you Movingon69, for sharing your own struggle with cancer and your encouragement. When i am feeling really down I have the illusion that I am the only one in the world who feels this way or that I have a particular misfortune. It is a double whammy having both cancer and bipolar.

Yesterday I went out with my son for Thai food in a nearby town. We couldn't see the mountains because of the intense cloud cover and it was absurdly cold for the time of year, but at least we didn't have smoke in the air. We had some apocalyptic days here as in many other places in western North America too.

Originally Posted by LostMyMuchness

I am sorry you are feeling down. I'm always here lurking, listening and hoping the best for you. I saw the thread in question and found it triggering as my mom passed from cancer. I wouldn't wish that on anyone. I hope you feel better.

Thanks for reaching out LostMyMuchness. I also lost my mom to cancer when she was very young (51). That's why I went and got a bunch of test for cancer when I finally quit smoking including a colonoscopy and eventually a chest xray just to check that my lungs had nothing obviously wrong in them after 35+ years of smoking. I'm 55 now. That was when I was 52.

I'm going to cut my AP Rexulti to 0.5 mg from 1 mg in two months if I am still stable. I discussed this with my pdoc as a plan. Anything that can give me a little more energy. I am half the person (or less) than I was before chemo.

Yes, I too found that thread triggering. I feel like it should have a trigger warning on it.

Originally Posted by BipolaRNurse

My husband died from pancreatic cancer, so I hate the disease with every fiber of my being. I'm so sorry you're dealing with cancer too, and hope your remission is a very long one. Hugs.

My mom was pancreatic cancer too. She only survived 5 months post diagnosis. . I'm so sorry for your loss.

I'm sorry you feel so alone and isolated, tecomsin. I wish I had a magic wand to make it not so. I don't know what to say on the posting. It's a shame seeing someone diminish cancer casually like that.

(Snow?!) Rant away, whether the weather is affecting you or not. It's ok if it does, sometimes it does me, especially if goes on and on. It's been mostly cloudy here today, and the weather has shifted for sure.

(Hey, I'm 55 too! )

[downandlonely]

Sometimes having a mental illness feels so bad that people wish for a physical illness. I definitely don't want cancer though. Although I think the stigma for most types of cancer is less than for mental illness (lung cancer would be an exception to this). I'm sorry you're struggling with this.

[Blueberrybook]

Originally Posted by downandlonely

Sometimes having a mental illness feels so bad that people wish for a physical illness. I definitely don't want cancer though. Although I think the stigma for most types of cancer is less than for mental illness (lung cancer would be an exception to this). I'm sorry you're struggling with this.

I completely get this. When I was in college and my anorexia was bad (later they diagnosed me with depression & social anxiety), people just didn't get how hard life was for me, exercising 4 hours daily, restricting food and only eating a decent meal and maybe a dessert when I met up with my friend from college. She was the only real friend I ever made, and now she lives in Connecticut, so I never see her or hear from her, except the occasional email. Even she thought I didn't have an eating disorder because I ate normally around her, and she had no clue I'd spent the week burning off calories for that one normal meal. I did all kind of weird stuff, and my brain was all the time on food and calories.

People on pro-"ana" (pro-anorexia) or pro-ED forums wanted to get thin. Nearly everyone wanted the official anorexia diagnosis which back then was a certain BMI and loss of your period for at least 3 monthsr. People who lost their periods would post, and I'd be jealous (mine took a very low weight to go away). A lot of people there, myself included, wanted to be bad enough for IP (ironically I was but never thought so) and have the feeding tubes the whole 9 yards. Just crazy.

[tecomsin]

Originally Posted by Innerzone

I'm sorry you feel so alone and isolated, tecomsin. I wish I had a magic wand to make it not so. I don't know what to say on the posting. It's a shame seeing someone diminish cancer casually like that.

(Snow?!) Rant away, whether the weather is affecting you or not. It's ok if it does, sometimes it does me, especially if goes on and on. It's been mostly cloudy here today, and the weather has shifted for sure.

(Hey, I'm 55 too! )

Hey Innerzone, thanks for taking the effort to write when you have so much going on in your life right now. I really do think part of it is the weather. My sleep hasn't been all that great the last few days. I feel better now. It is good to have the feeling that at least one other person in the world gets where you are coming from.

Originally Posted by downandlonely

Sometimes having a mental illness feels so bad that people wish for a physical illness. I definitely don't want cancer though. Although I think the stigma for most types of cancer is less than for mental illness (lung cancer would be an exception to this). I'm sorry you're struggling with this.

I see your point downandlonely. And yes having lung cancer is super stigmatizing. I have been shamed even by other cancer patients (in a support group of all things) for bringing it on myself... There is less sympathy in my view for people with lung cancer than for people with mental illnesses and it is super cruel since most people still die from LC in a year or two. Also a significant fraction never smoked (i quit before i was diagnosed). I feel just totally screwed as a bipolar patient who has been treated for lung cancer. I don't know if my fatigue is due to the chemo or the mental illness or to the meds for the latter.

Blueberrybook, you do sound so much better than a few weeks ago. I hope you get good news tomorrow and your new therapists offers you a lot of support in the weeks and months ahead.

I'm so sorry you feel so isolated. Big hugs! My mom died of lung cancer. I miss her every day. Do you have a therapist? Is there any groups you can join? If you ever need an ear you can always pm me.

[tecomsin]

So I get up in the morning to make us both coffee and then drive my son to the train station to save him some time getting to work in the morning. He's supposed to be in by 9. I promised myself I was not going to reproduce high school by dragging him out of bed late each morning.

Today he wasn't up at 8:10 and its a 35 minute ride on the train to work... I've been up since 7:45 to get ready. I went down and firmly woke him up and told him he couldn't live with me if he wasn't going to be getting up in the morning to go to work. Now he's up taking a bath. yes a bath in the morning. We won't be out of here for another half an hour at least.

I feel trapped in a life I didn't choose. I told him I get up in the morning to drive him to the train station and I don't like hanging around all morning waiting for him to get up and get ready. Otherwise I could just sleep in.

My days have so much anxiety. And there is so little to fill them except the daily minutia of life that cause intense anxiety every working day.

How are you doing today, tecomsin? Thinking of you...

[tecomsin]

Thanks Innerzone, I am thinking of you too. My son has an early onset glaucoma and takes eye drops twice a day, saw his eye doctor yesterday and fortunately was given a 6 month next appointment, which means everything is stable and the eye drops are working.

Even though he's a salaried employee they keep track of work and each minute has to be accounted. He's behind by a few hours and has to be caught up to -4 hours by the end of september, every 12 weeks so next week will be rough as he's down -7 or -8.

Also he's not leaving the house until around 8:45 so is getting in to work well after 9, takes 1 or 2 hour lunch breaks so he's getting home by 8 or 9 and still falling behind on the hours. I am usually waiting for him to share a dinner so it is disruptive of my day. He is staying up very late and then very tired in the morning and sleeps till noon on the weekends so he is stuck in this state of getting into work late and being tired all morning.

I have been waking early in the morning but getting back to sleep but still feeling tired all day. I smoke pot a little bit but constantly through the day so I am not anxious but tired.

Am finding also the recent US news quite triggering. I do remember the Anita Hill hearings and also remember my own experiences of sexual harassment in the workplace.