14 People Share How Their Medical Diagnosis Changed Their Life
No one goes into a doctor’s office expecting to hear the worst – that your life is going to be cut short by a terminal illness. Millions of people all over the world are faced with just that reality, though, and I imagine it can take some time to grapple with the harsh truth of it.
Once you do, you have to decide whether life is going to continue as normally as possible…or if you want to do things totally differently in order to cope.
These 14 people were faced with those choices, and they’re talking below about what their lives look like now.
14. Try to make an impact.
girl at my school passed away last night. She did a lot of awareness programs and she loved this school.
A lot of people recognized how much of an impact she made and i think that it’s important that we all take those moments to realize that the thought of death can really bring out the greatness of a person.
She is already missed so much.
13. Embrace every day.
58 yo man here. Crazy existential questions EVERY DAY.
In college I hardly understood what my English/Philosophy professors were talking about, let alone Herman Hesse.
Yeah, you embrace every day like it is your last. At the same time, I have to act as though I have another 35 years. You never know. Random s*%t took out my mom (70), my dad (73), and my step dad (69). The man who raised me walked Hiroshima six weeks after The Bomb and lived to 92. His wife lost it to Alzheimer’s…how do you measure THAT passing…the body remains long after the soul has passed?
My point is, I wish I had had the wisdom to embrace life in my TWENTIES. Not sure now much I would have done differently, but I regret I never had the advice or guidance from an elder.
“Youth is wasted on the young.” – George Bernard Shaw
12. Try to keep laughing.
My very dear friend (we met in kindergarten and have remained best friends since, and we’re both now pushing menopause) just recently lost her husband of 32 years to prostate cancer.
He was diagnosed less than a year ago; his only symptom was he had to get up a lot at night to pee so his wife (my friend, Mary) made an appointment for him with a urologist. After a routine exam and blood tests, the doctor saw something suspicious and sent him for more tests…and more tests…turns out he not only had prostate cancer, but it had already metastasized to his liver and bones.
Would an annual physical have detected this earlier? Doctor couldn’t answer that; it was a particularly aggressive (and sort of rare) type of cancer, and Mark (the patient) had had regular company physicals (he’d been a city bus driver for 41 years, recently retired) annually.
Anyway, the part of Mary’s story that really clenched at my heart was when we chatted at Mark’s funeral….he’d been undergoing some radiation treatment for a while, and she thought he’d been doing better, but during a visit with the oncologist, she said the doctor sat down and said, “So, Mark, do you know what we’re dealing with?” And Mark replied, “I’m dying, right?”
Mary said that that was the first time he’d expressed that possibility at all. She said she was almost in a state of shock but was still able to note Mark’s almost calm acceptance as he next asked the doctor, “How long? Are we talking weeks or months?” Mark’s only “wish” during those last months was to do some traveling, as that had been his plan after finally retiring and his youngest child had gone off to college.
He and Mary went to some of their favorite places – Niagara Falls, Florida, the western shore of Michigan (they near the capital of the Mitten State). He got a medical marijuana card (he found the hard candies worked best for his pain) and he and Mary enjoyed regaling me and my husband when we got together with stories about the different people they encountered at the dispensaries.
Like other patients here have mentioned, he tried to divert attention away from his illness whenever we got together and preferred to make us laugh, or listen to stories that made him laugh. He was a huge MST3K fan, so my hub and I took him and Mary to the Rifftrax showing of “The Room” back in May.
Mark laughed so hard he was gasping for air at times, and he mentioned many times after the event about how much fun he’d had. (Perhaps an example of laughter being the best medicine.) Mark passed away in early September, less than one year after his initial diagnosis. Men of Reddit, I urge you to see a urologist if you have even the hint of any unusual symptoms.
11. Don’t be scared.
A piece of advice I was given has stuck with me forever. I asked someone who was going if they were scared or how they deal with the knowledge they are going to be dying very soon.
He told me that he wasn’t scared at all. He was born in 1980, and he said that whatever state he was in up until 1980, he was going to return to, so why be scared? For more time than he’s been alive he hasn’t been alive, he’s just going back to whatever place he came from.
That’s stuck with me forever.. And made me at peace with my mortality.
10. Take your mind off it.
I’m a 19 year old girl who’s getting married soon. I’m dying of many things the most prominent problems being having had 3 strokes recently, Chiari malformation in which I can not be operated on, Ehlers danios classical which complicates everything, mastocytosis, POTS, hypogabuglobulemia (sp?) ((it’s a low immunoglobulin disorder), as well as cluster headaches (also known as suicide headaches).
I spend my time getting piercings- feeling some sort of other pain so that I don’t think of the pain I’m currently in. I spend my time with my fiancé loving him as much as I can before I eventually break his heart. I spend my time trying my hardest to seem normal.
I don’t mind dying. I have anywhere from 2 days to 2 decades left to live. I mind hurting those who I love. I’m a ticking time bomb…. And I’m going to blow up, and take everyone I love out with me.
9. Go out on a high note.
I don’t know if this counts but no male in my family has ever lived past 55. The women last until they’re almost 100 but all of the men in my family have died before 55. Both grandfathers dead before 50. One uncle at 48 to a brain tumor. Another at 43 to a heart attack. Another uncle to a brain tumor which went undiagnosed and caused him to shoot himself down a mine shaft.
My father is 48 and we are starting to worry. I am 27. If what apparent runs in the family I have less than 25 years. I don’t have a retirement plan. I might get married but I don’t want kids. At 27 I have visited 55 countries. I am going to continue doing that the rest of my life. If I end up on a death bed I want interesting stories and adventures as my memories. If I end up living longer so be it. If I make it to 70 and I’m broke I’ll just end it there. I hope I’ve already lived a good life and I want to go out on a high note.
8. You just never know.
My current condition is not, in itself, lethal, just to be clear. That said, I’m not seriously expecting to live past twenty. I’m quite excited about the 2016 election because it will be both the first and the last time that I’ll get to vote. The short of it is that I have been in agony since I was twelve (there are other symptoms: nausea, orthostatic blood pressure, chest pain when my heart rate gets too high… but they’re trivial in comparison), and somewhere around three years in I lost patience. I’ve had to fight tooth and nail just to get my doctors to acknowledge that the problem exists (Yes, there are medical tests proving that there’s a serious issue. No, I’m not posting them on reddit.), but even now there isn’t a doctor on the planet willing to treat the pain. Toridol works, but you can’t take that for more than a few days. Opiates work, but everyone is more worried about the side effects of addiction than the side effects of constant, crippling pain. There’s more to it than that, but you’ll have to read my comment history to find it. I’m sorry, but I can’t bring myself to read what I write about this topic. Anyway, I have to wait until I’m 18 to apply for euthanasia in Switzerland, then as much as another 2 years to actually get through the process. Assuming, of course, that they don’t tell me to fuck off too.
My life is actually pretty dull right now. I used to figure skate, but I can’t do that anymore. Actually, just moving around is so horrific for me that I can barely leave the house, and I’ve had to do most of high school online. I go to the grocery store, but not often; I can’t walk long enough to wind through the aisles and I don’t want to be harassed for using the scooters. I haven’t talked to my friends in a while, but that’s my fault, not theirs. Hearing about other people’s fairly happy, fairly functional lives is just depressing. I mostly read a lot: webcomics, news, reddit. Sometimes books, but you would be surprised by how hard it is to focus when you can think of nothing but the stabbing feeling in your side. Or maybe not. Everyone’s been bedridden by disease at some point. I’ve started reading Stephen King; I highly recommend him, even if I also recommend that he go see a fricken therapist. Seriously, dude, you need help. (Am I a hypocrite? Yes.)
Eating is the highlight of my day, and yes I know how depressing that sounds. It used to make my side hurt much worse, but lately it’s so constant that it doesn’t seem to matter if I eat anymore. It’s actually kind of liberating.
I cuddle with my dogs a lot, feed them, take them out to pee… I can’t exactly run a marathon with them, but there are other people in the house who can help with that.
Sleeping is just terrible, so I hold off as long as I can. Dreams integrate things your senses pick up. Pain is a sense. Use your imagination.
I guess I should be working on my bucket list, but most of the things on my bucket list are along the lines of “go to college” or “figure out a way to measure pain on an objective scale so no one ever has to deal with this bullshit again”, or even just “skate again”. Long term stuff, or stuff that’s just physically impossible or just not worth it.
There isn’t much of a thesis to this rant, so sorry about that. I don’t have any profound words of inspiration for you. Just keep in mind, I had eleven healthy years, then my body collapsed in six months. You never really know how long you have left. Get working on your bucket list now, while you still can.
7. Stop counting.
I was once in this situation, not quite as much now.
As a child I was diagnosed with a disease and expected to die +- 12 years later. Mostly depends on how well it’s controlled. Well, I mostly had awful control. Almost exactly 10 years later I had an episode and was admitted to the ICU, the doctors thought that was it. They gave me palliative treatments. My heart was expected to stop. It did not. I somehow recovered ad walked out some days later.
After getting out, I was somewhat weaker and less able than I used to be. They assigned multiple specialists to me to help with controlling the disease. But whatever they tried, piling more and more things, just kept making it worse. I was able to go to work but I was barely functioning, I have no idea why they didn’t fire me. My doctors kept repeating I had only weeks or a most a few months to live, I would have another episode any day. Nothing worked. My day to day life consisted of waking up, zombie-ing through work, playing video games and almost falling asleep on them until I had enough and reached bed. Repeat, repeat, repeat.
In late summer, I had an opportunity to enroll back in school, in another city. I had piled on just enough money to afford it for some time. But I was going to be car-less, disconnected from the world, from my doctors and appointments. Well, I decided fuck it with all that, if I’m going to die soon anyway I might as well go away and live like I want. I moved away. I went to school. I took just enough medicine to keep me functioning day-to-day, I stopped with every control thing past that. It was hard but I had a blast. Somehow I seemed to be more able to function, even though it should have spiraled down very fast. I just kept on going to school, friends, homework and video games. After some months, I had a small routine check which was well overdue and I was in town so I decided to go. I got the results days later : the best I ever had in my life. My day-to-day control was near perfection. The short-term chances of another episode happening were very low and I was not deteriorating any more than I was supposed to.
This was some years ago. I’m probably closing in on 20 years with my disease. I stopped counting. I don’t want to count, I don’t know my age, I don’t want to know it and I make a point not to remember my date of birth. Knowing my age would only remind me that I’m supposed to be dead and that it’s still imminent. I did degrade through the years of course, but less than expected. I know that I only have a couple years left. In the meantime, I graduated and got a great job at which I am performing awesomely. I’m a workaholic, I’m intense at what I do. People are hardly able to see I’m sick.
It does impact a few life choices. I see my retirement money as my palleative money instead. No way in hell I can reach retirement. I do not wish to bring children (future orphans) into this world, although I am strongly considering adoption and caring for those children while I’m able to. I live healthily (also helps day-to-day), work a lot and enjoy life, yet have very little in terms of long-term plans and dreams.
I am contemplating how I will ultimately die, since that near-death episode hurt like fuck and I don’t relish the idea of my living as a vegetable for months if I was to reach my slow death. I wish I had a big red button that when it’s time, I can say my goodbyes, go in my room, call the funeral services to come get me, push the button and I instantly stop. Every year there’s a few articles about researchers finding cures that could be out by the following year, yet nothing ever happens.
Since the day I got my disease, nothing changed at all. I lost hope a long time ago. I don’t believe they will achieve anything before my death. Until then, I try to enjoy every day and don’t think too far ahead. Every once in a while I go to some routine checkups, the doctors don’t understand why I won’t die, but just recently was the first time in a long time when I deteriorated fast.
No idea how much time I have left, just know it’s not much. I never dwelled on it except when I initially learned I got the disease. Every once in a while I’ll think about it, be sad and drown myself into some otherwise-untouched video games for the evening and then move on with the life I have left.
6. A normal existence.
I have a heart condition which is going to get me very much sooner rather than later.
It’s congenital, and one that several close family members have had, and have passed away from in their 40s. I’m in my late 40s, so the clock is ticking, loudly.
But I’ve lost friends and family to other things, both cancer, and accidents and my view seems to reflect that of some people who have had actual terminal diagnosis of conditions – you just carry on.
I’m sure there’s any number of ways I could live a better life, which might extend it for a bit, but why should I? I’m going to have pizza, I’m going to go on rollercoasters, I’m going to live whilst I can. I’d still have to work even if I chose to avoid all other potential health threats.
I’d prefer to have a normal existence and then not be here one day than cosset myself in cotton wool and hope to live into my 50s or beyond.
5. Find comfort where you can.
I was diagnosed with stage 1 ovarian cancer last year, and while my prognosis is almost 100% (knock wood), sometimes I still live in fear because the type that I have is rare, and if I recur, it’ll be terminal.
So I have many moments thinking about the worst, trying to understand death & dying (because ultimately, it’ll happen one day), and realizing that regardless of cancer or no cancer, we are all a part of this life- we live and die alone and all together all at the same time. That brings me some comfort.
So day to day, spirituality brings me comfort. So this will be deep but whatever-. I find comfort in the fact that life is suffering (that is an absolute truth to me), and dying is the release of this suffering and a break from the cycle. I believe in the soul and I believe how it is different from but essential to our physical bodies. Our bodies are extremely vulnerable but our souls aren’t. I think that we are all recycled parts of energy and our own soul/energy leaves a certain imprint in this universe, and in that sense, I will never not fully not exist. I’m very influenced by the fundamental concepts of Hinduism and so reading about it has been very therapeutic for me.
But who knows? If there is no such thing as the soul, then I won’t care that I cease to exist because it’s not like I’ll know. My loved ones will suffer, and that’s no fun thinking about that, but their suffering will only be temporary too and then bam- we all “move on” and then our past lives won’t matter anymore. Hope all this wasn’t too depressing! 🙂
4. Complete comfort.
I’m depressed, bipolar, or schizophrenic. Combo of something. I am probably not going to live very long, maybe not 40. I’m comfortable with this. This realization freaks out any SO that finds out.
I keep going because I haven’t reached any personal goals yet (I want to publish something). I have complete comfort knowing how I will die.
3. A balancing act.
Diffuse Scleroderma here. Not exactly a “you have this much time left” kind of diagnosis yet, but more if a ticking time bomb. Not sure if my life will be shortened by the scleroderma itself, as it invades my body, or the immunosupressants I take daily, to fight it off.
Essentially there’s a balancing act between letting the disease run rampant and kill me, and slowing it down, but risking getting sick from opportunistic infection.
2. You never know.
How many days does a depressed person have? You never know. The more time has passed since I became depressed, I have come to the realization that in the end, it’s all about the mind, the happiness. It is what we live for. If you truly lose it, you don’t want to live anymore. You become suicidal. It’s because you lost what you live for. Happiness. It’s hard to grasp for people that haven’t been depressed. I didn’t understand my friend when she was depressed. Now I do.
The thing is that if you lose your leg, you may still be happy. You may still enjoy life. If you have 5 years to live, you may live 5 happy years. It’s impaired life, but still life. When you get depressed, you lose everything. It’s not impaired life. It’s negative life, worse than death. You don’t want to live at all, you don’t have anything to live for. You just want to die.
I would rather live happily, even few years, and die happy. I don’t know if my life will end prematurely or if I will suffer from it forever. I don’t want to underrate others that are going to die almost for sure. But still, don’t underrate depression. It’s a horrible disease.
1. No one has a guarantee.
Not completely off topic but my best friend (who is more like a brother to me) landed in the hospital at the beginning of the summer. It turns out that years of neglect to his body had finally taken a toll on him and he was diagnosed with a weak heart. His heart only pumps about 20% of what it should. How we were explained is that it beats twice as fast as a healthy heart should.
I seriously thought he wouldn’t make it as his condition got really serious while he was in the hospital. They kept him in the cardiovascular intensive unit for about a week to keep an eye on him and the doctor said people with his condition up to the stage that he’s in don’t last more than a couple more years. I’m terrified.
I love this dude like family and it really hurts to know that he just may not wake up one day. He was put on a restrictive diet with a liquid intake restriction also and at first he did follow it but he seems to have just given up. He’s lost hope and when I talk to him he says “i’m going to die soon anyway, might as well enjoy my life until then.”
It’s super heartbreaking. I try my best to spend as much time as possible with him and take pictures and what not to remember him when he’s gone. Then again I’ve become a lot more appreciative of life. We’re not guaranteed to wake up tomorrow, hell I could be gone before he is for all we know.
I sincerely hope that none of you have to face choices like this one day yourself, but if you do, I hope you can also face them with grace.
How do you think you would react? Let us know in the comments!
