I have always been a VERY strong person. I am the one people would come to for advice and for strength but lately I find myself completely without strength and it also feels like no one I have ever been there for is there for me now. I have rheumatoid arthritis and I’m 28 years old. I was born with the disease and my whole childhood was destroyed by the illness. I never had a normal life. So I grew up knowing how to deal with pain and suffering. However, I went into complete remission when I was 18 and my life became wonderful. I did everything I never could do before. I had a great career in radio as a reporter and writer, the things I always wanted to do. Then when I was 25, around my birthday the rheumatoid arthritis came back. At first I was in denial but pretty soon I had to accept it. I had to quit my career because working in media requires the ability to be mobile and full of energy. Rheumatoid Arthritis takes away your mobility as well as your energy. Now I am 28 and I feel like my life is just completely over. Every dream, every want, every thing I have said I’d do in life is now impossible. I have to live on my Social Security and I can barely even work part time. I’ve been trying to find part time work to help with the complete lack of anything going on in my life but I have not found one yet. I just sit at home all day, everyday, except to go to the grocery store and while I sit I am in pain. I am in terrible pin when I first wake up. It’s the worst when I wake up. I take narcotic pain killers that are legally prescribed to me but those also present a problem…they wear off and I feel worse than before. But without the pills I cant walk at all. But even with the pills I’m not as mobile as a normal person. And I still have pain. My doc said the pain can only be expected to be 40% less than what it would be without the pain killers. 40% is better than nothing but it’s not complete. I am still in awful pain everyday, every minute – every second that I’m alive. MY existence is shit and there is NOTHING anyone can do. I don’t respond to the medications they have for the illness so I’m left taking naproxsen and oxycodone. I can feel my bones wasting away. The really crappy part is that NO ONE knows what I am going through. People pretend they understand but no one can really get what it is like to be in chronic pain every second of every day. They don’t understand how it can affect a persons well being. I am not myself, I find no joy in anything. Songs I used to love mean nothing to me now. I find no happiness anywhere. The only person that I know cares about me is my husband and he works very hard to give us a good life but I know even he is frustrated that I can’t do more. He would never say it but I know normal people don’t understand what I’m going through and they don’t seem to get why I can’t just “be happy” or just “live with it”. It’s incredibly hard to ignore terrible pain.
Today I woke up and I really wanted to die. I just wanted to lay down and give up. From what I’ve read if you are like me, born with this disease, and it comes back later in life, you will never get rid of it again. So where does that leave me but with a crappy life where I’m constantly in pain and then I die. It seems so empty and so pointless. We own a gun, I could just shoot myself….I just keep trying to live “day by day” as my therapist always reminds me to do, but it is so hard at times there are just some mornings I wake up and I just want my life to end. There is no happiness to look forward to anyway, my condition will never change. The US govt’ is so wrapped up in religion that they are not letting science progress as it should so I can’t get a cure for this disease, so in my lifetime I will never be cured. I”ll be a cripple with awful pain my entire life. I know husband is going to want to have kids soon…how can I carry a child, i can barely walk as I am now. I hate myself and I want to die. I mean this type of existence is pointless. I will not get better – I will just get worse…it’s proven science…and I don’t have enough money or insurance for knee replacements so I will be so bad off I will be wheelchair bound soon enough. It’s all down hill from here. Whats the point in living.
7 comments
I knew someone with your condition. It is incredibly painful, as you described.
We are all suffering. Not to minimize what you are going through, we all just go through it differently, as we have different pains.
Mine is physical as it is psychological. I get migraine headaches, obsess about things, and procrastinate on others. My life is in shambles. I am a couple of months out from ending it all myself.
I can only do what I have been doing for years, disappear. I do not plan to hurt anyone except for myself. I will go out into the desert and camp for a week, enjoy the air and open space, and then end it.
I have made my peace with God, you should do the same. Talk to God and ask that you be forgiven for your inability to deal with the pain, as I have. I know my soul will be taken care of. I have faith in that respect.
Both of you make a good case for dying. In fact, if I tried to talk either of you out of it, you would probably either think that I was full of sh_t or that I was just patronizing you. I won’t waste your time with either.
What I can say is that I too lived with chronic pain. I admit that what I suffered does not sound as bad as what you are dealing with, it was bad enough. I had a ruptured disc in my lower back that sat right on my sciatic nerve causing me pain 24/7 that shot all the way down from my back through my legs. My doctors didn’t want to operate, they wanted me to do physical therapy, all the literature said I could end up worse by surgery. So, I went the route of narcotic pain killers as well, along with sleeping pills, and anti-depressants. Instead of getting better I was dying.
I lost about 40 pounds in 4 months. I began looking like a sunken in corpse with pale skin. A number of people who didn’t recognize death complemented me on losing weight and said I looked great. They wanted to know how I did it! What was I supposed to tell them? Don’t eat and take lots of narcotics?
My body became so deteriorated that my mind began to shut down as well. I was overdosing on anti-anxiety meds, benzodiazipines. Eventually, my body called it quits and my brain quit as well. I had a grand mal seizure and woke up in the back of an ambulance. I spent about a week in the hospital. After getting out I realized my body was dying and that I needed to fight to live. So I made it a point to eat as much steak and potatoes as I could to regain my health and strength, in spite of the pain, in spite of the fact that my body was telling me to die. My back was still killing me, but my will to live was stronger.
It took me 3 doctors to find the one that would operate on me. It was against the grain of what all the other doctors and the literature said. But I couldn’t live with the pain and figured the worse that could happen is that I would still be in pain so I had to try. For me it worked. I was lucky that I had the will to do the research and find a doctor that knew what he was doing. My back pain is gone as long as I don’t do something stupid, like lift too much.
My encouragement to you is to not give up just yet. Research your conditions, even more so than you already have. See some different doctors than who you’ve seen before. Join message boards/support groups with other people that share your condition. Look for alternative treatments. Acupuncture anyone? Instead of focusing on what you can’t live with, focus on how to live. Find some way around your pain and create an environment where you can live. If going up/down stairs hurts your knees then don’t. Let someone else get the groceries or get the mail. If you’re on the top floor of an apartment, move. Make your living environment work for you. If the laundry is in the basement, move it to the main floor. If you have an uncooperative landlord, show them the ADA.
Arthritis is very debilitating and I know it’s not as “simple” as an operation and that it probably can’t be cured. But maybe it can. Maybe God wants both of you to live and will help you find the way as long as you don’t give up. Maybe like me, your suffering will help you some day to encourage someone else to live.
You have no easy answers and I didn’t BS you. You have many valid reasons to make you want to stop the suffering. For now I want to encourage you to find a way to live.
I don’t know what to say. My heart goes out to both of you for the incredible pain you’re going through. You’re absolutely right. No one can even imagine what it’s like to be in constant pain in your every waking moment. I can only hope you find peace somehow, some way.
I, too, am in horrible pain everyday. Not probably as bad as yours but I am 55 years old and fall in a stupid brackett. Apparently any woman between 45 and 60 are now label as addicts if they want pain killers. I can not get them and I want to die. My family is so tired of hearing how much pain I am in, they go places without me. They all love me so much, but it would be better for them not to see me like this. I am so tired of being treated like a first grader by doctors. “With pain killers you will add fuel to te fire, so I am better off dead. i understand. Maybe one day before we give up that last day we will find the one who can help. But I am going to start my count down.
I know what its like to want to die. I have been 90% bedridden with an undiagnosed illness for 8 months now. I have gone through every emotion possilbe. Before i got sick i was a happy helathy person with everything i could want in life. The illness was very sudden. It was like bomb hit. I had to quit my job after 15 years there. I went to emergency with dizziness, heart palpitations, extreme weakness. I had passed out the day before. It only went downhill from there. My doctors thought i was overreacting. They sent me a few specialists, none of whom could find anything wrong. I lost my appetite and and about 15 lbs which i have not been able to gain back. I have buring pain in my limbs, disorientation, poor circulation, numb hands and feet, my muscles have waisted and i am loosing my hair. The list goes on. I eat way more than i use to by force feeding myself but my body just does not absorb the nutrients. I have tried several natural remedies, each of which i thought would be my cure. I have had constant urinary tract infections that don’t respond to antibiotics. Finally my doctor said it my be a problem with my kidneys so they are checking that out. Another specialist said it could be systemic vasculitis which is rare. All i know is so much time has gone by even though i was very persistent the doctors have been draging their feet. Now what ever it was seems to have done a lot of damage to the major organs in my body. They also have determined that i have a chronic high white blood cell count and elevated inflammatory markers in my blood. You would think this would be a red flag of some sort. I feel hopeless.
I don’t have much family support except for a ride to the doctor when i need it. Other than that my family thinks i should be up an about doing things that will make me feel better. I can hardly get my shower in without passing out due to heart palpitations so i find it insulting that my family blames me for my illness. I also know it’s not anxiety because i feel calm, actually lethargic all of the time. I know its not anxiety. I am in so much pain and suffering everyday that i really have no life and want to have the option to end it if i am not going to get better. I know my family would be devistated but i don’t feel like they really care because they have pretty much shut me in a room and have turned away because they can’t stand to look at or hear about my illness. They are pretending like i don’t exist so why should i exist. If i had the means to end my life i might not actlually do it but i would feel better knowing the option was there. I am a firm beleiver in doctor assisted suicide after watching my father die of lymphoma. At this point all of my dreams consist of being peacfully guided to my death and then i wake up only to another day of being bedridden in misery. So to say the least, i know how you feel.
I have cancer. I have had surgery while I was wide awake. Do you know what that feels like? My heart goes out to you all. In my eyes your family. Im in high school and it is so fustrating to hear people say they hurt or they have pain when they go home to their rich parents and get what ever the hell they want. Its not fair for us because they dont know what the hell pain is!
my heart goes out to you all
I can relate to your pain and desire to end it all; death does seem to be a topic of central focus when no help or emotional support at hand and there seems to be no end in sight.
I am a 51 year old married man that has RA for over 15 years that has destroyed the life I once had and the future I dreamed. I can also blame the destruction of my body on my very active sports life when I was younger with a strong body and the attitude “no Pain no gainâ€. I had many surgeries before the onset of my RA to repair injuries to knees, back, neck and countless broken bones. I was no stranger to pain and the fight to recover to get back in the game.
But one night in the winter of 1998 I went to bed okay and then I woke up at 2 or 3 in the morning from a deep sleep with the most god awful pain I had ever experienced in every part of my body. It hurt to breath, I could not open my hands, my arms were frozen stiff. I thought I was dyeing from some kind of poison. Nothing ever kept me in bed but this thing whatever was happening had me beat and in tears.
My wife took me to the ER and after many test the ruling was arthritis. I was shocked. I said arthritis? I thought that was an old person’s disease and had no idea it caused this much pain. So began my life with RA. I have had many surgeries since that night in my fight to try and beat this killer and stay the father and husband I had always been but RA slowly beat me into submission and I had to relearn the rules and adapt.
Now 15 years later I am a shell of the man I was 6’ 4†260lb hard cut football player. I have gone trough the depression that nobody warns you of and that society stereo type’s you as weak for not controlling your emotions. Fortunately things are changing slowly and I did get some good help but just like RA the depression is always there and flares from good to bad and when the pain has not only filled your mind to the point were sleep is not even a refuge and your family is strained by the loss of what you used to be yes suicide sounds like the only real reprieve,
We are criticized to even think of this as an answer to our pain by those around us and by the professional field but not by those who have felt this kind of pain that can not be held back by the strongest of pain medications. Let them feel what we deal with everyday of our lives for one or two days and then let them critize our thoughts.
But even though I have thought of ending my pain with a so called mercy death I have held off because of the emptiness it would cause those who really love me and of my 2 grown children a son and daughter who are starting their own family’s. They have expressed over and over how they know how bad the pain is and appreciate my efforts to fight and stay alive for the future.
So I turn my thoughts to them and my grandchildren that haven’t been born yet and yes do live one day at a time. It’s the only way to deal with RA. Some days are better and unfortunately some days are very bad. However, there is much research in this area of Auto-Immune disorders and advances all the time. Keep in touch with your rheumatologist and if you don’t have one make it your first priority along with a good therapist and internal medicine doctor. Use all the tools you can to fight to stay alive and find ways to take your mind off the day in and out of pain. Laughter and spending time with family is my way of getting away.
Unlike many others would advise I don’t think thinking of death is wrong. You must be truthful to your own real emotions before you can deal with them. Who would not honestly in the same position as us or another chronic pain suffers say that death is sometimes on their mind as a way to find relief. It is our own right to think how we wish and should not be forced to compile with the fear mongers who feel it is their duty to alter our death thoughts. I have been highly criticized and some have tried to have me committed to a physch ward because they thought I was a danger to myself.
What a crock. If anyone really wanted to kill themselves they are going to do it, no amount of being locked up when you are no crazy will change that. Now if you are super depressed and want help then it is a great idea to help you with your future.
Who’s to say people are wrong to end their life of pain when they feel they can take it no more? But to those who are looking for help to stay alive there are factually so many warm hearted people that understand and can help. The internet is filled with help and so is your local area with consolers 24 hrs a day for you to use.
Best of luck.