16 People Talk About Daily Life With An Unthinkable Diagnosis

Life is hard enough without knowing when it’s going to end – or that you have less time available than most – but that’s the reality for many people out there living with a terminal diagnosis.

Then again, maybe knowing your days are numbered makes you appreciate them just a little bit more?

The only way to know for sure is to talk to people who are living that reality, and these 16 people have some unique and touching thoughts on how they go about their every day.

16. Don’t change anything.

I saw this question, and first thought “Oh wow, I wonder what people are doing!”

Then I realized, “Oh yeah, I’m one of those people.”

I have Cystic Fibrosis, and my current life expectancy is 37.5. Luckily it has been going up for a long time. However it doesn’t go up 1 year every year it goes by. Since I’m over 23 now, I suppose that my life expectancy is 14 more years. Wow, I haven’t thought of that in a while.

If we estimate that my life expectancy goes up 6 months every year (which has been the average trend), my age and the life expectancy meet at 52 years old. So that’s nice.

As for what I do, I finished my undergrad last December, I’ll finish my Master’s degree in May, and I just accepted a full-time job offer starting in June. I spend my days just like other students, and a lot of people I know simply aren’t aware that I have CF. I look healthy, and unless someone asks why I’m taking pills whenever I eat, I don’t bother bringing it up. I plan for the future just like everyone else I know, and I’m not sure why I would change anything I do now.

15. Less than ideal.

Brain tumor here. 30 years old. The rest of my life seems like it will be less than ideal. I found out 9 months ago and my wife immediately left me because she couldn’t deal with it. I don’t blame her as I had begun suffering massive memory loss and honestly could not remember many of our experiences anyways.

My parents were worried about me given the situation and when i didn’t answer the phone (I was out getting food). Called the police. Police showed up and entered my empty apartment and searched around until they found a knife collection I had in a drawer. Due to some state laws a few weeks later I received a letter charging me with various misdemeanors and felonies. I later accepted a deal pleading to a misdemeanor, lots of community service, “therapy”, continued working and probation until I die. Violating any of these means I will end my life in prison.

The court case combined with the divorce completely bankrupted me. I cannot even pay my medical bills despite having excellent insurance (I cannot afford $80 for another MRI).

So to summarize how my week looks? I go to work every day and do the best I can so I don’t lose my job. I miss legitimate medical appointments as all my sick and vacation time goes to making court mandated therapy sessions. My weekends are spent doing community service because of the number of hours I must complete per month. There is no checking things off the bucket list, there is no money to do anything I would like to do. I cant travel as I no longer have vacation and am not allowed to leave the state. Most of the time I am uncomfortable. Sometimes due to pain, but usually because I cannot remember names or experiences. When anyone finds out I have memory loss they all act like an idiot and ask “oh, can you remember this?” Guess what.. sometimes I can, sometimes I cant. Please stop asking.. it is embarrassing.

To be honest, the rest of my life (however long that may be.. and there are some pretty good guesses) looks pretty dismal.

14. A new avenue in life.

I’m 18, I have roughly 6 months left do to liver failure. I suffered with major depression for 4 years and attempted to commit suicide through over dosing with opiates on several occasions. Over time my organs have degraded from the abuse and I’ll have central system critical organ failure soon.

The thing is ironically I beat my depression and no longer wish to die. So knowing I will pass I have devoted a lot of my time to helping people with depression and counseling suicidal persons. No one really understands in the moment that suicide is a consequence of anxiety and sorrow outweighing coping methods.

So as someone who is been there and back my advice would be to appreciate the little things. A sunrise, a laugh, a cup of coffee; and if you’re someone who feels like there is no way out besides suicide, thats not true and your emotions are lying to you.

There is always a new avenue in life and new people to enjoy it with. Life is short, and when you know how many days you have left, you learn to truly appreciate how great it can be.

13. Day by day.

I’m 49. In 2007 my family doctor was running routine blood tests and discovered high levels of iron in my blood. More tests followed until one day, during a medical checkup he said, “we’ve found something”, which was the presence of high levels of m-protein in my blood, an indication of Monoclonal Gammopathy. This hinted at multiple myeloma, cancer of the plasma cells in the bone marrow. I was told it was probably benign given my age, but after a bone marrow biopsy I was officially diagnosed with stage I multiple myeloma.

I’ve been fortunate enough that eight years later it’s still stage I. Apart from regular bloodtests I’ve yet to start treatment. I don’t feel sick, apart from the lethargy that comes with lack of exercise. The cancer is dormant. Every day I wake up and at some point my cancer comes to mind, then I shrug it off and live my day.

I feel like this cancer if a time bomb, and I wonder when it will go off. I used to be a member of multiple myeloma forums and even started to blog about diagnosis, but I stopped all that. I didn’t want the reminder that I had cancer. I’m not oblivious to it. Rather, I’m happy living day-by-day enjoying life’s pleasures when and where I can.

The toughest part is wondering if I’ll even make it to retirement. But… day-by-day, my friends… day-by-day. I’ll fight that battle when I come to it.

12. Life is still worth it.

I was born with Spinal Muscular Atrophy type 2 and I’m 22 years old and I’ll be lucky to make it to my thirties with the already shitty health issues I have now. I’ve almost died countless times and my health will only continue to get worse as time goes on. I’m wheelchair bound and have barely enough mobility to feed myself (even then it’s still a struggle). My immune system is horrible leaving me vulnerable to illness that could easily kill me because I also have a weak respiratory system.

These are just facts. Facts that I cannot change or fix. The only thing I can do is learn to live with it and make the best of what I have. I was given one life to live and it might not be perfect, but fuck who’s life is? I guess I could sit alone in a room crying to myself about life being cruel and unfair, but that won’t do any good. I have to make my life whatever I want because I see people who have more means than I do complain about their lives and I’m here with a smile on my face and love in my heart.

You have to love whatever it is you were given in your life no matter how small or insignificant it may seem. There are others who make do with less than me and they are happy, so why shouldn’t I be? Life is too fucking long to be sad and worried about stuff you can’t always control.

So go out there and live the life you were meant to live. It might be scary, sure, but I promise you it’s worth it.

11. A silver lining.

On March 26th of this year, I was diagnosed with Acute Myeloid Leukemia. I have a particular cell mutation called FLT-3. I had 3 rounds of chemo and then a bone marrow stem cell transplant on July 30th. We’re not sure exactly how long I have left. I could be dead by Christmas or I could live for several more years.

I have a bone marrow biopsy on Nov. 7 that will go a long way toward determining my future. To answer your question, Mondays are Thursday are spent at the hospital. I’m actually typing this from the Mayo Clinic waiting room. On these days they analyze my blood to track how well the transplant is producing blood cells and also to check the level of my anti-rejection drug. Aside from those days, I don’t get to interact with the public very much. I’m quite susceptible to infection now, so I have to avoid crowds.

So I don’t get to go to restaurants, movies, ect. On other days, I work from home, play video games (Wildstar just went free-to-play), watch TV, the same stuff most home bound folks do. If all of this has a silver lining, it is that I found out how much people care.

The outpouring of support that I received was overwhelming and surprising. I have a 15 year old son. I’m hoping to last until he graduates high school, at least.

10. Make the most of it.

I’m 41, was diagnosed with Pancreatic Cancer in July 2013, at the time I was told I’d have “maybe 6 months to a year”
2+ years on I’m still here, my oncologist seems amazed every time I see him.

I know my time is limited, I’ve already outstayed my welcome, and I suppose the biggest change I’ve noticed in myself is I no longer give a flying fuck, I speak my mind at all times, whereas before I was fairly introverted, these days I just don’t care what anyone else thinks of me.

I was fortunate enough to have really good life insurance, and as a result my mortgage has been paid off, so I just spend my income like there’s no tomorrow. My employers are amazing, they let me carry on with my job – working only 3 days a week, but with full-time benefits, so I still get 25 days holiday etc.

There’s a whole load of downsides though, my digestive system is knackered, I need to take a load of medication every day, I’m tired all the time, and worst of all my weight is slowly dropping all the time, I’m wasting away and there’s nothing I can do about it.

Overall, my day looks pretty good, I work a bit, sleep a lot and have lots of expensive toys to play with. I promised myself not to fret about my impending doom too much, time is very limited, make the most of it.

9. Try to keep laughing.

I am 20 and I have Duchenne MD. DMD is a rare progressive disease which eventually affects all voluntary muscles and involves the heart and breathing muscles in later stages. The life expectancy is estimated to be around 25 years, but in rare cases an affected person can live 30+ years.

My lungs and diaphragm muscles are weakening and I was recently hospitalized for respiratory troubles. I have recently begun to have panic attacks and the stress is making my hair gray (or grey, which one is it?). I’m taking anxiety meds and I’m going to a therapist to help cope. I’m terrified, but I try to push those thoughts away by using humor.

I love to laugh and to make people laugh. I just have to keep going through life and forget that it’s all got a slowly approaching expiration date. I just wish I wasn’t scared, I wish I wasn’t a pussy; Everyone is gonna die, it’s not just me.

8. What matters most.

This is one of those things that I type up and post on reddit countless times. Then turn around and decide it’s too personal and immediately delete it.

when I was 11 I was in a pretty serious accident. most of my ribs were broken and kinda just free floating, I was partially paralyzed (temporarily thank gawd) and events were keeping everything from healing properly. Doctors kept urging me to be more careful because any sudden impact had a high risk of just stopping my heart. I even had an impact absorbent vest I was supposed to wear under my clothes, so if another student hit me or bumped into me it would absorb the shock. (the result of course was that kids were now interested in hitting me to see if I’d feel it)

Every day could have been my last. For the most part I shied away from people and focused on just staying safe. But I was also coming to terms with the idea that I could just simply die tomorrow. I dealt with it by finding god. I was at church twice on sundays, bible studies on wednesdays, youth groups on fridays. I did everything I could to live that life because it was the only future I could foresee. Alternatively I also skipped a lot of classes and did the minimal amount of homework to get a passing grade.

After a while I also got very suicidal. I was getting sick of just waiting for it to happen. I wanted it to be over already! The only thing holding me back was my religion. There’s no skipping the line in the kingdom of heaven. You kinda just have to wait out your suffering before you get to go. I remember completely breaking down when it came time to picking colleges after high school, because It had never been in the plan. I had never considered I was going to make it that far and I was completely unprepared.

I’m not a religious person any more. Religion isn’t exactly tailored towards people who like to ask questions, and I never stop. But having spent that amount of time in such a dark place, I understand why some people take comfort in their faith. Anything that inspires a person to just keep moving forward against the odds is priceless, regardless of where that source comes from. I don’t believe in religions or even like them for the most part, but I respect the strength it can offer people when they need it the most.

I always delete this post because it was a lifetime ago. I’m such a completely different person now than I was then that its weird to look back at that person and admit that was me. It’s not me, and yet it was me. I’m scared to admit I was ever so lost and hopeless because I don’t want people to read this and think that I’m somehow broken. Not after I’ve spent so much time putting myself back together. I was broken, for a very long time I was completely shattered. But I’m good now. I promise.

If I ever find myself in that dark place again where I don’t have a future to look forward to I’m going to find something I can cling to that will keep me going for just one more day. Every day for one more day. Until I have nothing left.

What matters most is just having that one more day.

7. Don’t stop living.

I’m 19, born with Cystic Fibrosis.

When I was about ten years old, my doctors sat me down and told me I’d probably need a lung transplant at age 25, then if I survive that, my life expectancy would be another five years after that.

I grew up semi normally, but the thing about CF is that it gets worse as you get older. So I went through a nasty period of depression and anxiety in my early teen years that I’m still dealing with.

But it’s getting easier. I’m trying not to let my illness stop me from living. I moved out, got engaged, got two dogs. Im planning my wedding. Going in vacations. I’m very fortunate to have a great support system and a fiance who loves me. And I’m trying to become an advocate for CF awareness.

I’ve made a few speeches at different events and do lots of social media fundraising. The thing that bothers me the most now, though, is knowing that my little brother also has this disease, and watching him go through the same thing.

6. A fairly normal fashion.

I don’t know exactly how much time I have left but I know it will be more like months rather than years. However, I am close to 70, a widower with no dependants and have had a good life so it is more important to me that I live the rest of the time left to me in a fairly normal fashion rather than go to extreme measures to extend my life by a relatively short period.

The sad thing is that I can discuss this with anybody because I am being :-

depressed
or

morbid
or

negative

5. Sometimes work is what you need.

I have stage 4 cancer which started in my prostate and went meta. Now the evil is in a few of my ribs, my spine, and my left femur. It was too late for slicing and dicing. I finished radiation therapy awhile ago. I’ve got a bunch of daily pills including hormones and a zoladex shot every three months.

I have zero complaints. I’m only 60. I work EMS, and I’m heading back to work this month after a short leave of absence for treatments, and some time to get a mental handle on things. I’m going to continue working. I have reddit, so at least I have that going for me too.

4. They don’t want to upset anyone.

Brugada-syndrome here. It’s rarely diagnosed (normally people just die of it and then you check their relatives because it’s hereditary and if they have it, they get to spend their whole lives knowing that they could just drop dead any day from now. Yay.). I’m kinda cheating here because I don’t know how much time I have left. My heart could fail today or in 20 years from now.

Last year I had a cardiac syncope for the first time. I was out for a run, felt absolutely fine and suddenly I felt a little nauseous and before I could really think about it I blacked out. Next thing I remember is a woman picking me up from the ground and after a few minutes I was kinda okay again, just a little dizzy and tired. Ironically my first syncope really made me see the bright side of the whole thing and made me realize that a sudden heart death is probably a really nice way to go. It’s fast and it doesn’t hurt.

My life is pretty normal: I work as a journalist and I am finishing my master’s degree (wish me luck!), I go out, I’m pretty active, I can eat and drink what I want, I have plans for my future…it doesn’t really affect my daily routine. But sometimes I’ve got those memento mori moments (not always in the “wow, life is so beautiful”-way, at the moment it’s more in a “why do I have to waste my precious time here writing my thesis instead of having a beer with my friends”-way). So far I don’t have or want a pacemaker because these things do influence your life and I have heard from a lot of patients that they didn’t improve their quality of life – and I heard it hurts pretty bad when they shock you. As I already mentioned: there are way worse ways to die than from sudden heart death. Only my family and my boyfriend know about it. I’d like to keep it that way because anxiety seems to be a huge problem for a lot of people suffering from it. I don’t want to upset my friends (there is nothing they could do) and I frankly don’t want them to upset me by constantly worrying or reminding me of having a life-shortening disease.

There is one thing that Brugada ruins for me: having children. It’s a genetic disease and although I do not think it’s too bad to live with I wouldn’t want to “give” it to my potential children. On top of that, the average age of death for people with Brugada syndrome is about 40 (though the statistics are not super reliable) which means I might not be able to see them grow up. I’m in my mid-twenties now. I guess if we (my boyfriend definitely has a say in this) decide to have kids, I would get the damn pacemaker (which is still no guarantee to bring you back to life successfully each time you have an episode but still improves the survival rate).

And before I get back to my thesis now, I just wanted to say thank you to all the amazingly brave and cool people here who shared their stories. You really moved me. Best of luck to all of you.

3. Try to make memories.

I know this will be buried, but Stage IV Breast cancer, spread to brain, bone, liver, and lungs. I was 36 when diagnosed with 1 and 2 year old boys. I live every day as normally as possible.

I try to make as many memories as I can with my boys. I laugh a lot, and try to do things that I love. I’m nearly 5 years out, should’ve died last year just from the brain mets… Love life!

2. A beautiful outlook.

When I was 14 I was diagnosed with a rare liver condition, after a failed suicide attempt, that left my body pretty badly shaken up. I was puking blood, couldn’t move very much for a month or so and just overall wasn’t okay. After an initial surgery I was taken into a room with the doctors and my aunt, who was the only person that I trusted to help and told I had roughly 10 years to live and that I would be dead before my 26th birthday.

I spent the first couple of years in deep depression, and also teenage angst because I had also just lost my mother. It wasn’t until I found drugs, and the minds of people like Alan Watts and Carl Sagan that I just had a beautiful outlook on my now limited life. I wasn’t as scared and looked at death as another stage in the circle of life.

It was weird, because I still have never told anyone. I’m 23 now and two years ago I saw a few specialists and they performed surgery, and am happy to say my life expectancy has increased by 30 years. I think adjusting to having more time was the hardest part for me, because I sort of adapted to this “carpe diem” style of life and then had everything turned on me and had to plan for a future.

1. One day at a time.

Alzheimer’s here. I just take one day at a time. I heard of the meds from Australia that stops and even recovers some memory. I am in the beginning stages so I am doing pretty good. I can’t remember any numbers most of the time and carry a notebook with phone numbers in them.

I still live by myself although my daughter stops in every day to see if I need anything. I still drive also. But I can tell my world is slowly getting smaller. That’s okay no sense fighting it. I’ve made peace with myself and God. Leaving my family is another thing though.

I have a 15 year old granddaughter that is everything to me and I grieve deeply for her. Thank you for asking.

It really helps put the rest of life into perspective, don’t you think?

Tell us in the comments how you think a diagnosis like this might change your life!

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