Don’t Lose Hope!

Hope StarToday’s post discusses the sensitive yet important topics of depression and suicide. I have received suicide letters here in the past both as emails and blog comments (never published of course), and my hope is that by sharing my own personal story, I might be able to help others who are struggling with these issues themselves.

While I was still living in San Francisco many years ago, my friend (who was also my landlord) was diagnosed with leukemia. Due to his age and his rapidly deteriorating condition, doctors advised against chemotherapy treatment, and recommended that he instead try to enjoy his final few weeks as much as possible. I was between jobs at the time, so I took advantage of the fact that I was home more than usual, and made a point of going upstairs each day to visit him. I intended my visits to not be too long, but they always turned into hours-long events. Day by day, my friend recounted his entire life to me, as I sat next to his bed. Eventually, he was transferred back to the hospital. I made it a point to visit at 6:00 am each morning so that he could wake up with the daily newspaper, just as he did at home.

One of his main concerns at the time was about who was going to take care of Oliver, a 14 year old service dog that he had just adopted himself less than a year earlier. (Oliver’s lifelong owner had recently passed away.) I knew that he was hoping that I would offer to take the dog; I also knew that he would not ask as much directly. For me, the hesitancy was a result of having adopted a puppy from a rescue shelter just a couple of weeks earlier. My one dog family (Lily, who I said goodbye to this past weekend) had just grown to a two dog family (Alva, now my oldest)…and now we were seriously considering jumping up to a three dog family! After some talk at home, we decided that we would indeed take care of Oliver. When I told my friend/landlord, he was delighted. One of his biggest unresolved problems had been fixed, and he could relax just a little bit more, all things considered.

I write all of this because five years ago today, Oliver passed away somewhat unexpectedly (although not too unexpectedly, since he was 16 years old.) I was as close to him as you might be to a senior dog that you’ve only known for a couple of years…maybe even a little moreso, when I took into consideration all of the traumatic losses this caregiving dog experienced during his final years. And while he wasn’t in my life too long, I was absolutely devastated by his loss. Which gets me to the topic of today’s post.

Depression.

Five years ago I was extremely depressed, and the loss of Oliver didn’t seem to help any. Less than a month earlier, I had (finally!) been diagnosed with rheumatoid arthritis, after a multi-year trek from doctor to doctor in which I was trying to figure out what was wrong with me. (I still remember saying, on multiple occasions, that “nothing was supposed to hurt this much.”) A little about my struggle to figure out what was wrong: during my last doctor’s visit in San Franciso, I mentioned that I thought I might have arthritis. I was told that if I had arthritis, that there was nothing that they could do for me. To this day I’m still dumbfounded at having ever received such a response. Back to my period of diagnosis, though, five years ago. On top of the incredible pain, my knee muscles had almost completely atrophied. My physical therapist was encouraging me to walk at least 15 minutes a day…not too much, but something–anything–in the hopes of reactivating my legs. I was in my early 30’s and I had to learn how to walk again? I was definitely down.

And as my physical condition continued to spiral into what seemed like oblivion, so did my emotional state. The pain! Ah, the pain that to this day sometimes is too strong to even comprehend. During my early flares, I used to have visions of a poisonous snake biting me, over and over and over again. For me, the only solution to my problems seemed to be a head transplant. Silly, I know, but that’s what I actually used to think about for hours on end…how could I possibly exchange my current body for a healthy one. (Obviously this probably wasn’t the most healthy thing to be thinking of at the time, but back them it seemed to be my one and only out.)

As days turned into months, and months turned into years, I began to realize that I was not living in some science-fiction novel. This was my body, and I couldn’t change it for another one. (I still remember that afternoon when my physical therapist tried to talk a little sense into my by telling me as much.) Cue the continually repeating stages of acceptance and denial. Things didn’t seem to get better; instead, my life became even more challenging. Not only did the methotrexate not work, but its side-effects were too much for me to bear. (I was tethered to the toilet for six and a half days a week…and as soon as my stomach got better, it was time for the next dose!) My rheumatologist ignored my pleas to change medications. “Your dose is so low, you can’t possibly be having such a strong reaction.” I figured it was time to look for help beyond my medical doctor.

I found a psychiatrist. I wasn’t too happy with his services, but I decided I was going to just focus in on the part that was helping me, as my options were very limited. (In the country where I currently reside, ‘mental’ health continues to be behind the times, especially when compared to most other countries.) I gathered my strength. I made the decision to take myself off the methotrexate, which was immediately followed by another decision to look for new rheumatologist. But then a funny thing happened – I went into remission, for almost an entire year! It was more than I could have ever hoped for. It even allowed me to write off everything that happened during the past few years as just one big bad memory. (Again, looking back, this was probably not the best reaction I could have had.)

We all know what happened next, though. My rheumatoid arthritis returned. I was completely unprepared…both physically and emotionally. My downward spiral continued, and I was reaching lows that I never knew existed. The pain increased. The depression increased. It was all just too much to handle. And this is supposed to be for life??? I often thought to myself. This is when I started thinking about a new out: suicide. (I was shocked that I was even contemplating such a thing…but for a while, it was all I could think about.) I was scared to acknowledge to myself that such thoughts were entering my mind, and I didn’t know how to reach out for help.

My thoughts gradually started moving from the general (should I commit suicide?) to the specific (how should I commit suicide?) My medicine bottles started talking to me. Or so I thought, but by that point there was so little about my life that was clear to me. The constant pain was wearing down not only my body, but also my mind. The medicine bottles on my nightstand were telling me that they had the solution that I was looking for. All that I had to do was swallow their contents. All of their contents.

And this was when my internal alarm bells really started to sound. As much as this seemed like the perfect solution to my problems at the time, I knew that there had to be something else. There had to be some other way to fix what I was going through.

I asked my partner to please hide all of my medicines, and to only give me doses as I needed them. I spoke with my sister about the thoughts that were in my head (she is a psychologist). Little by little, I started to realize that I needed to turn my path around, and find a better solution. I needed to get all of the help that I needed. Even though the task seemed to lie somewhere between very daunting and practically impossible, I made this my new goal. I knew that I probably wasn’t going to get out of the hole anytime soon, but that I had to start making the effort to do so. I had to start moving in the right direction, one day at a time.

First on my list was building a new support team of trained physical and mental health professionals. I was going to establish a support team that was right just for me. I needed (and found) a rheumatologist who was just right for me. I needed (and found) a psychologist who was right just for me. I needed (and found) a physical therapist who was right just for me. In addition, I realized that I also to include some family members and friends, those who I knew would provide me just the support and understanding that I needed. I couldn’t do this alone; I had to ask for help.

And to make a long story short…well, readers of my blog know where I am at the moment. Even though my rheumatoid arthritis continues to progress, I have figured out not only how to accept its presence in my life, but I’ve also managed to reach new emotional highs on a regular basis. The journey from “then” to “now” wasn’t easy, and it definitely wasn’t quick. But it certainly was possible. It absolutely was achievable.

This change from depressed pessimism to realistic optimism could, and has become, my new reality.

During the past few years in which I’ve been blogging, I’ve often hinted at a lot of this, but I’ve never discussed it so openly. So much of this happened before I ever started blogging, which might lead some people to believe that I’ve always been as successful at coping with the pain and disability as I currently am. But I wanted to share this today, because I know there are many other people living with RA who find themselves in the same place where I was myself, just a few short years ago.

I know, I know. It can feel like things will never change. It can feel like things will never get better. But if you make the decision today to work towards new goals of acceptance and happiness, you will begin to see positive results in the coming days and weeks; results that will only continue to grow stronger in the coming months and years.

And as I continue to face challenges in the present, from my most recent (almost completely disabling) flare, to having to say goodbye to my dog Lily this past weekend, I am certainly not going to say that dealing with these challenges is easy…but I will say that approaching them from a position of emotional strength and stability does make a world of a difference. It is this confidence, this ability to learn what is and what is not in my control, that allows me to continue to move forward, more that I could have ever previously thought was possible.

If you are depressed or if you are contemplating suicide, please reach out for help. Speak with a friend. Speak with a family member. Speak with a suicide support line. Speak with a doctor. Speak with a therapist. Speak with a psychologist. Speak with someone online. Don’t feel ashamed, and please know that things can and do get better.

Most importantly, don’t lose hope. Don’t ever lose hope!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

30 Comments
30 comments
  1. Colleen R says:

    Hi-

    This post comes at the perfect time (as they all seem to do). It’s important not only for RA sufferers, but for JA kids, and the caretakers of all who suffer. This subject is often the elephant in the room that does not get addressed – out of fear, denial, whatever. Often, the bad feelings grow to the point of feeling insurmountable.

    At the JA conference recently, there was feedback that a session is needed for kids and adults alike – so that people can learn the skills that you learned, and build the care team that you built. You would be a great speaker at such a session!

    So – thanks for sharing this adventure. In response – I’d like to share my mom’s view post on the same topic:
    http://jiamom.wordpress.com/2009/12/21/the-gift-of-hope/

  2. Annamarie says:

    That was very moving, and I thank you for sharing your “there to here” story..I’m trying really hard to also move forward, even if its only one small step at a time :) God Bless!

  3. Nan says:

    read the blog post…very powerful….thanks for sharing such an intensely personal experience…you have likely helped many many people.

  4. Jenna Visscher says:

    I too started blogging years after the “worst years” before my diagnosis of Ankylosing Spondylitis. I haven’t found the courage yet to look back the way you have done. I know I will one day – when the time is right, when I have the strength to relive the emotions.

    I’d like to second your observations that it will get better if you make the choices you speak of. Fight for good care, advocate for the best treatment, and decide to be happy despite the horror of realizing that the diagnosis of autoimmune arthritis feels mind-numbing. You ask yourself over and over “how can this be happening to me?” You spin in the thoughts and wonder how you can possibly be expected to live a life in pain that stops you in your tracks and takes away any quality of life. When I finally received a diagnosis and found some acceptance – I was able to move forward and focus on creating a way to live the best life possible which was something I never thought possible in the throws of denial and pain and fatigue.

    Thank you so much for sharing your story – I know it will help so many people that you did. – Jenna

  5. Spoonie Chic says:

    Thank you for this post! Living with RA is depressing…but blogging/tweeting has been helpful (to me.) If people talk about their TRUE feelings, it can give them SO much power!

  6. Jennifer says:

    RA Guy your post moved me to tears and as someone that runs a support group I am always promoting to our members to contact their GP, Rheumatologist, Beyond Blue or Lifeline here in Australia when it is getting too much for them. I always try to make myself avalible to talk and to encourage to speak to a professional. It breaks my heart that someone is so down due to pain, fatigue, emotional or financial pressures that they have no HOPE. Thank you for writing this post and saying it better than I could……….ever.

  7. Christina says:

    Dear RA Guy,

    You have done it again. Thank you. The work you are doing with this blog is so important. I’ve been through a lot of challenges in my life, including other autoimmune diseases and cancer, but nothing has ever made “the pills talk to me” before RA came along. In the first months after my diagnosis I was shocked to find myself seriously considering suicide as a “reasonable” option. Crazy. Here’s to hope!

  8. Thrive With RA™ says:

    Dear RA Guy, thank you for sharing such deeply personal thoughts with us. I’m grateful to hear you have persevered so well. Your words convey great hope. So often the topic of suicide is “swept under the rug,” where it doesn’t do anyone any good. I have experienced suicide as one the ones who was “left behind.” Living side by side on a daily basis, sometimes the signs are not there to prompt even the closest relative to help. This poses the question to the survivors of, “How come I didn’t see it coming?” which is difficult to absorb and to live with; however, over time, it gets easier. If only a hotline or forums to empower and uplift existed when this took place. Thankfully, we have options and positive places to seek sanctuary. Thank you again for sharing and for opening this topic up for the exposure that it deserves.

  9. MamaNym says:

    This is one of the most valuable posts I’ve read in a long time. You’ve blessed us all with your honesty and courage in sharing such a deeply personal journey. As someone who spent my teen years in pain with healthcare providers who told me it had to be all in my head – and who suffered severe depression including suicidal thoughts – I thank you for your encouragement to us all not to lose hope, ever.

  10. Sunshine says:

    Thanks for being so open. This is exactly what fellow chronic illness patients need; a dose of reality with the knowledge you can emerge whole on the other side.

  11. nancy says:

    Thank you for you posting. It means something that people feel the same way I do at times, I am new to facebook & blogs. Where do you find blogs & such. Thank you for your moments taken from your life because they make sense of mine.

  12. Marissa says:

    thanks so much for reposting this. It took me back to a couple of years ago, when I was probably at my worst with being depressed with my arthritis. I was in limbo with school for one. I had to go on homebound, where a teacher comes to your house and teaches you. She never explained anything to me, therefore I couldn’t do the work, and I was practically failing. Also, I was on methotrexate and folic acid, and I had been in the hospital three different times in the past few months for pneumonia because of my lowered immune system. The methotrexate wore down my body, making me tired almost all the time, having to take 2-3 hour naps every day. I had no social life whatsoever, and my days consisted of sitting on my butt all day not being able to do anything.

    I was seriously down in the dumps, wishing I could be someone else. Going back to what I said in my profile of RA, music was really helping me cope. It seemed to be the only stable thing I could count on in my life. I had an old cd player, and had a few cds and songs that I loved. No Boundaries from Kris Allen was on the American Idol Season 8 CD, which I had gotten that July. It basically talks about how you can get through anything no matter what the challenge. It really helped me realize that I shouldn’t give up, and that I should start having hope. I still listen to this song sometimes, and I always remember how it helped me. There’s also another song that I recently discovered that can be inspiring. It’s called “Fighters”(http://www.youtube.com/watch?v=BXQhMMd7v7w)I like Kris Allen if you didn’t notice ;) haha But it really does help me. :) I hope other kids who have JRA/RA can listen to inspiring music and get a good message out of it. You would be surprised at how much a simple song can change your mood and outlook. <3

  13. Linda Basta says:

    Thank you so much for sharing. I had been wondering how on earth you could be so positive with such a horrible situation. I recently started 2 blogs myself in the hope if helping me as well as others. Seems like i’m on the right track.
    Thanks for giving us hope.
    Linda
    BTW I added your blog link to my site

  14. kerry keys says:

    Everything you write resonates with me. I love that you’re always providing a good insight into RA and living with hope. When I was pregnant and close to giving birth, I had had enough, I wanted bubs out. I was looking forward to being able to do the things that I used to do before falling pregnant. I never looked back thinking, ‘I wish I was the same as I used to’, i only looked forward. What I’ve noticed since diagnosed with RA, is I’m always looking back – back to when I was skipping through life, back when the sun was shining and I was living life fully, ignorantly. By reading your post, I realise that I need to again look forward…because, just maybe, I may skip again. Thank you, RA Guy

  15. Teresa says:

    Thanks for sharing, RA Guy! I have never thought of suicide but I can definately see why people have thoughts of it. If my pain maintained (like in the beginning) not sure I would be here today. Thank God for MTX for me! No side effects. Even though I still live with severe pain, at least I can walk and look like a normal person. The fear is always there that the drugs stop working. Love your blogs….thanks for inviting me!

  16. Tracy says:

    Thank you so much for sharing your story. It’s so scary, yet so true. I’m so glad that you are brave enough to talk openly, which allows the rest of us the chance to support each other.

  17. Deborah Leger says:

    I really don’t think people understand how hard this is on us mentally. I was in agony for over a year prior to being diagnosed with RA, I lost over 30 pounds in less than a month because the pain was making me too nauseated to eat. I was unable to get out of bed by myself and not being able to sit on the toilet unassisted was just too much. I was 19 years old and my body was failing me and no one could tell me what was happening. I was on that edge myself. I don’t know how many times I thought about taking a handful of pills. The only thing that stopped me was the thought of someone I love having to find me like that. I hope that the doctors can connect chronic pain and depression. They go hand in hand in my opinion. We struggle daily with a body that refuses to do what our brain is telling it. When just taking a single step without agonizing pain is all we want. Why shouldn’t we be sad about our body failing us. I have now lived longer with RA than without, I have learned to deal with the pain and I think I am a stronger person because of it, but there are still days when sadness because of what I cannot do is overwhelming. Stay strong RA Guy and everyone else out there. Eventually things get better.

  18. Frantasm says:

    Four & 1/2 months into my RA diagnosis I am starting to grieve & understand how serious this condition is. I tend to always try to see the positive & be grateful. I have never asked “why me” or thought my life was over. Yet…boom… uncontrollable sadness and a feeling of brokenness. I’m so glad you shared this story & highlight it on the sidebar. I believe it is important to have a good attitude, but I’m starting to see that it is okay to mourn and be sad. Trying to beat RA away with sunny optimism may just push the pain deeper, at least for me that’s been the case. Things will get better, but there doesn’t need to be any shame in getting help along the way. Thanks for sharing!

  19. VINICIA says:

    That was awesome.. My family does not support me. All my friends have left my side. My pill bottles talk to me everyday. If it wasnt for my dog I would end my life. When I had my own home swimming pool everyone was my friend. Even my pastor and his wife has walked out of my life. Im so tired of chatting on the computer I need real ppl in my life I need hugs…

  20. Sian says:

    Thank you so much for this post. I do not suffer from RA but ME. I am in the same boat as vinicia; I do not have anyone to support me. Family and friends have dropped away over time, unable to cope or understand. It is this isoation that truly depressses. We are social creatures by nature and we need contact with real people. Virtual friends are not the same as the real thing and i feel this is what helps most people, contact with the real world.

  21. Bev says:

    I was recently depressed and struggling with suicide and I made a huge mistake of searching for help on Facebook on a couple of the RA support groups. What I got was railroading by many of the women on these groups. There was one who was kind enough to inquire about my situation, but I did not tell her or anyone that I had been considering suicide. I was too embarrassed to tell anyone, but it was real. I was told that I was not the only one who has RA. I know that I’m not the only one who has RA. I was totally misunderstood, so instead of telling them that I really needed help, I withdrew from their group. Maybe they were having a bad month also. I just hope others are not being misjudged and treated the way I was. It’s not always as simple a fix as positive thinking as was implied. This looks like a safe place. I sure hope it is.

  22. Connie says:

    Thank you for your honesty. You make it a little more bearable for the rest of us by sharing so much of yourself. Please don’t ever stop.

  23. denise says:

    thanks for making us all feel better ,with ra and osteo conditions,never give up or into it…fight…

  24. Sally says:

    This article is 100% terrific and spot-on – RA Guy, my hat is off to you! As the child of a parent who committed suicide, I would strongly support everything you say. Never lose hope! Everything is temporary and will change, and just like you pointed out so well with your story, you never know what will happen. Also, to those of you even thinking about it, you have no idea of how deeply your loved ones will be hurt by your suicide. My mom died almost 40 years ago and it still hurts. Even though I have had big ups and downs during my RA journey just like most of you, I consider suicide not an option. And even at the worst things have always gotten better. Love to all you heroes and heroines!

  25. Beth henshaw says:

    Thanks for this. When I was *finally* diagnosed, and sero negative to boot, I was at a very low point. The repeated phrases like ” I have RA.” Or “what am I going to do now?” No, one was understanding of what I was going through. And more importantly, the darned prednisone at high levels made my depression and mania all the worse! Do you know what helped? Talking with other RA sufferers. I kept talking. And learning (real books about RA) and reading real websites. I’m in a place now that is better. And dropping my horrible bedside manner rheumy to much to do to a more human one makes all the difference. Also, adapting to the NEW life. Changing how I do things and finding new enjoyments. Much hugs and love, Beth

  26. Faith says:

    Hi RA Guy and fellow RA’ers,

    Thank you for sharing your story in such a direct and straight forward manner. It helps to break the stigma about how deeply affected we are by RA. The risk of depression and suicide among people with RA is very real. I was inspired to see that people email you for help. People need to know exactly what to do when darkness strikes. You’ve given practical suggestions of how people can reach out for help.

    I struggle with depression and thoughts of suicide, too. I was at the top of my profession when RA robbed me of my career, the place I was living, the people I worked with, and the direction I thought my life would go. Adjusting to this life is hard work.

    I appreciated your honesty about things in your life that were contributing to the depression and how you built a better support team. I am finding the same. I’m in the process of finding a new rheumatologist, my counselor is excellent, I need a better physical therapist.

    I can totally relate to those people who posted about the social isolation. That is one of the hardest parts of living with this disease. I live alone and have grown children. We all have some friends/acquaintances but life with RA seriously curtails being able to go to events. People also start to fall away. I haven’t figured this part out yet but am hopeful that I’ll be able to develop some network of real-life friends who are there for me.

    I do have a strong faith in God. This has saved me on so many occasions when the isolation seems endless or a new challenge is difficult to cope with. I also believe we are hear to continue to help one another and to have a positive impact on others. Helping doesn’t have to be some big project. It can be as simple as truly caring about how someone else is doing.

    RA Guy? I also loved that you kind of gave a big picture perspective and specific things you did to improve your life. A belief that there is hope, that quality of life will improve is so important. I am writing today because I need to connect. The despair was rather intense.

    Thank you and continued blessings to you as you help hundreds or thousands of people !!

  27. Claude says:

    People who can come through so much so young like you are amazing. I don’t know how you do it, I’m finding it harder the more pain I’m in day by day.
    I only hope I can get treatment soon and things turn around, I feel quite pathetic feeling the way I do when I know that others suffer worse but having chronic pain is so hard to cope with. I’m finding It hard to continue working anymore but can’t give up my job, I feel like my husband doesn’t understand how much I go through so therefore I feel alone in this. Its bringing me down more than ever before so I really appreciate you sharing something so personal just to let us know we’re not alone and that there is hope.
    Thank you RA guy and everyone else that shared on this post.

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