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Woman looking back at a younger version of herself having fun and seeing a friend

It’s Coming…10 Years

I’m writing this article now because I don’t think I will be able to do it in six months. This is not a happy article but I hope you all know me well enough to allow me the space to vent just a bit!

My RA diagnosis anniversary

June/July 2020 will mark 10 years since my diagnosis. 10 years since I really started showing signs of rheumatoid disease. I still remember that fateful day when I couldn’t get out bed and my life changed forever. I still remember the denial, the anger, the grief, and the depression of learning about this chronic illness. My body deteriorated right before my eyes and my dreams faded away.

I still remember my life before RA: the opportunities, the possibilities, good health, and happiness.

Life has changed since my RA diagnosis

Now, all I see is disease, pain, stiffness, immobility, and deficiency. I see failure, I see sadness, and I see myself doing absolutely nothing worthwhile.

I am reminded constantly of my deficits and the brutal nature of this disease. I carried bags of books and lab notebooks. I rock-climbed, biked, and worked with animals.

Even when I’m asymptomatic (or when I don’t necessarily think about my symptoms), I am reminded of my RA every morning when I take my 10 to 12 pills, with food. A decade ago, I rolled out of bed, grabbed a granola bar and ran to class. Now, if I don’t eat enough, I anger my digestive tract.

Every day I am reminded of what my life has become, what it’s not and what will never be.

How will rheumatoid arthritis change my future?

10 years ago my life was easy. It was all about going to class, socializing, seizing the day, and choosing my opportunities. My future was unhindered. Never once in a million years did I think that I would be ill and disabled. I didn’t know what would happen the next week, let alone the next year or nine. I didn’t know where I would be when I was thirty, so how could I budget for a debilitating autoimmune?

Still thinking about where am I supposed to be

I had an idea of what my life would be like but, with my diagnosis, none of my ideas overlapped. I live the way I do because I have to, not because I want to. The last ten years were hard. And, honestly, I don’t see the next ten or twenty or thirty being any happier or easier.

I am not content or proud of where I am today. I still think about where I was supposed to be, all the wasted years working towards one dream (which may not happen).

My diagnosis anniversary is harsh reminder

Most days, I’m okay, I feel pretty good but today, I am down and I feel rotten. I know these feelings will pass but not for a while. This ten year anniversary is not a happy one. It is a stark and brutal reminder of how my life changed forever.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Louise1024
    6 days ago

    So sorry you are having difficulty. I hope better days are ahead for you.

  • Casmere
    1 week ago

    Dear Monica, you have been and are an inspiration to all of us here on the RA site. You are loved and admired for your strengths and your attitudes toward life while you battle RA. I read your post earlier in the week but I had to wait formulate what I wanted to say to you. I hope this helps you along with everybody else’s comments.

    Yes, we all have our extremely down days and I realize you are in one of them and looking to a major anniversary.

    I am one of the lucky ones, even though I was diagnosed with RA when I was 16. I went into a remission, for quite a number of years with flares coming up occasionally over those years but nothing that set my life back until 2016. I did have issues starting that in 2002 that continued and over those years got worse to the point that I was seeing a rheumatologist in 2010.. Then in 2017 after a bad year from 2016 I was hit with a major illness outside of the RA that terminated my whole life. No, I shouldn’t say terminated but ended my life as it was at that time. No longer able to work, no longer able to look after my mother, was devastating to me emotionally but surprisingly I have come through that and realize this is my life now and I have to deal with it and not to dwell on the past. I turned 64 that July of 2017.

    I know you have read my stories and my comments and things before and you understand what I’ve been going through in the last while. That I am waiting to start on biologics DMARDs, a drug called XELJANZ.

    I truly feel for you at this time with what you are going through. We all have been there as you would be very aware. You are in my thoughts and prays. Blessings to you.

    Casmere,
    Blessings to all

  • NPEOttawa
    1 week ago

    I hear your pain Monica. This isn’t an easy road and perhaps the only silver lining in the clouds above me are are the understanding, non-judgemental people I meet here. Whatever happens in the future I hope you can keep writing here; I look forward to the articles you write. And paradoxically, sometimes rants and other not so cheery articles are what help me feel better – makes me forgive myself some for the days I’m not a Pollyanna Sunshine…

  • Kelly Dabel moderator
    1 week ago

    Thanks for commenting and sharing NPEOttawa. So glad that our community and contributor articles are helpful to you. You are not alone here. Wishing you some relief ahead. Best, Kelly, Rheumatoidarthritis.net Team member

  • forevrblu
    1 week ago

    I am so sorry. I wanted to let you know that you are not alone. I was diagnosed in October 2006. I don’t remember the calendar date, but I do remember the phone call from my rheumatologist. She called me while Survivor was on. In the early years, my disease was well controlled using just methotrexate. When that was no longer enough, we added biologics. Again, they worked for several years. They stopped working and the new ones that I have tried over the past couple of years aren’t working either. My liver no longer tolerates methotrexate so I am relying solely on prednisone and a biologic. Every morning, when I get out of bed and try to walk, I wonder how much longer I can go on. I am now applying for disability. My life is so completely different than I thought it would be. I still haven’t figured out how to “accept” my disease and find happiness in my new normal. You are entitled to grieve but if the burden gets too much, please seek help from a therapist or psychiatrist. They might be able to help. I have been seeing a therapist for several years and she helps, even if all she does is listen as I cry. Take care.

  • Kelly Dabel moderator
    1 week ago

    Thank you so much for sharing your story and encouragement forevrblu. We appreciate hearing from our community. So glad that you’ve been able to find support with a therapist. Best, Kelly Rheumatoidarthritis.net Team member

  • Lawrence 'rick' Phillips moderator
    1 week ago

    Hey how the heck did I miss your wonderful article? Who else will hassle you if I am not doing my job?

    Actually i will not hassle you over this. I had to give up my life and I still hate it almost 12 years later. Fortunately, I went to school, graduated, and now found my way to writing and advocacy.

    I hope life will be good for you every day. I know that we do not always have great days, but when you have days that are not great, I hope they are short.

    rick – moderator.

  • Monica Y. Sengupta moderator author
    1 week ago

    Thanks Rick (@lawrphil)!

    I am trying to find my way back to writing and blogging. It was very helpful for me.

    Fingers crossed this decade I find my way back.

    ~Monica

  • Lawrence 'rick' Phillips moderator
    1 week ago

    Monica, it looks like you are well on your way.

  • RAfighter
    1 week ago

    I’m so sorry you have to go through this. You sound just like me 20 years ago. I was sure I had no future. You didn’t mention what meds you are on, but please try the biologics. It changed my life so much! I think I am close to normal now. I thank God daily for the miracle he gave me. Keep fighting! You will find one that works well. I’ll pray that it’s soon!

  • AimeeH
    1 week ago

    It has been 11 years and I am totally disabled and I don’t know that I will ever get over loosing my life as I knew it. I agree with you about so many points in your article. Like you I do feel as if I have missed out on so much when it comes to where my life could have taken me.

    My life was planned as to where I wanted it to go, happiness and all. I had my dream job. Loved it and overnight it was gone. Friendships that I thought would last a lifetime, gone in a blink of an eye. Every single great plan I had ended with a nap I took.

    I don’t have the push in me to keep people from finding out anymore how sick I am while they are enjoying their lives. It just breaks my heart, my hopes and dreams gone, poof!

  • Monica Y. Sengupta moderator author
    1 week ago

    Hey Aimee (@westernkyhurts)! Thanks for sharing on my article. I know exactly how you feel. I also had my plan, my life; basically EVERYTHING “set in stone”. Was I wrong!

    I hope you permit me the chance to share another one of my articles with you. In this one, I talk about my A plan how I had to change it after my diagnosis. https://rheumatoidarthritis.net/living/career-life-plan-changes/

    I also thought I would share Nan’s article. It is one I re-read and find very helpful. In it she details how she came up with a new plan post-RA: https://rheumatoidarthritis.net/living/lets-get-real/

    Please know you can always come here if you need to talk or vent. We are here to support you and listen. I think a lot of us would agree it’s hard seeing our able-bodied friends living a life we used to have!

    Hugs, Monica

  • AimeeH
    1 week ago

    Monica, thank you so very much for sharing these two articles for me to read.

    I really never had the chance to change anything due to being hit hard with RA right out of the clear blue. I tried, I tried so very hard to keep what I had and make it all work with my RA. I didn’t want to have to give up anything about my life just because I was sick.

    I hurt so very bad each and everyday. My life is kinda like the movie Groundhog to where everyday is the same. My husband is what keeps me going and happy. He gives me a good life so I really should not complain but sometimes I just have too.

    Thank you for hearing my vent and for the articles to read. You really seem like such a caring person.

  • Lawrence 'rick' Phillips moderator
    1 week ago

    AimeeH,

    I had a very similar experience and sometimes I still do. I wish I had an answer. But I do not. For me,i have had find what I always wanted to do and pursue that. Sometimes I keep doing it, other times, not at all. I wish you the very best, and do keep us apprised of how things rare going.

    rick – moderator

  • AimeeH
    1 week ago

    Thank you so very much for caring enough to respond to my post.

  • littlecathleen
    1 week ago

    I was diagnosed at 24 years of age and I am now 50 years old. I have had RA for more than half of my life. In the beginning, it is sad to have to say good bye to your old life to start a new one that’s filled with pain, fear, confusion among other emotions and feelings.
    But there must come a time when you have to except it. You embrace it. It’s not going away. The mourning period has to end so you don’t miss out on the new and exciting experiences that are planned for you in this new one.
    Dreams and goals are what you make them. You just have to change your mind and your perception.

  • Lawrence 'rick' Phillips moderator
    1 week ago

    I think that we all different experiences. I believe we must be very cautious about telling others how they should feel or not.

    I am glad you have a found a way to move forward.

    rick – moderator.

  • Mary Sophia Hawks moderator
    1 week ago

    Oh Monica! My heart hurts for you.
    I think we all face these feelings every day. Some days, we are better able to cope. Others, we can’t see a way out.

    You still matter and you still make a difference! I always look forward to your articles. Even this one hits me at my core.

    It’s important to remember to avoid judging yourself by what you used to be. I have to remind myself frequently to only compare my RA self to my RA self.

    Chronic pain eats the happy neurotransmitters in your brain. MDs have found that anti-depressants are very helpful in chronic illness. I have found that to be true.

    I’m so glad you are reaching out. Having this disease at such a young age stinks!

    Prayers and hugs,

    Mary Sophia, Rheumatoidarthritis.net Team

  • Monica Y. Sengupta moderator author
    1 week ago

    (@c7mv96) Mary Sophia!!! Thank you so much for your kind words.

    I have been trying to work outwards and not internalize my feelings. Putting them out to others and hope they feel comfortable sharing their own story.

    At the time I wrote this article I was just overwhelmed by all these events but since I am working to be patient and kind to myself (the new year was not a bad push either, lol!)

    Thank you so much, Mary Sophia!! ~Monica

  • Jo007
    1 week ago

    Thank you for such an honest piece about what it is like to be down when we have RA. My life changed a lot nearly a decade ago with diagnosis of another life-changing long-term condition diagnosis, and now I have RA in addition; wow the picture at the top of your article rings true! I default to positive days, focussing on the things that I can still do, but I have to work hard at not being frightened about the future, as self-sufficiency is such a core part of my identity. The lows are very real, and I actually found it a great relief to read your article, and I feel less isolated because of it. We can be proud of the days when we are being positive, but perhaps we should be even prouder of those days we get through when we are really struggling, and when we haven’t been able to share. Thank you.

  • Mary Sophia Hawks moderator
    1 week ago

    Joo007, Great comments! We do need to be proud of those days when we struggle to survive, even if all we did was take meds and get to the bathroom.
    I’m so glad you appreciated this article. Our website is a great place to reach out.

    Mary Sophia, Rheumatoidarthritis.net moderator

  • Heartsong
    2 weeks ago

    I hear you. I had dreams too. All along my life of nearly 70 years there have be abrupt turns that took the “what was or might have been” out of reach, RA was only one of them.
    I won’t say to you to “make the best of it” or “just eat rutabagas” or “adversity only makes you stronger.” It all sucks.
    At 70 I know that what I wanted is truly out of reach and it hurts. I also have learned that I need to create each day and not let it roll over me. I need to give, extend what I have in energy, empathy, kindness and know that somehow, some way, all will be well.

  • Monica Y. Sengupta moderator author
    1 week ago

    Hey @heartsong!

    Thanks for your lovely comment. I really appreciate your kind words and advice.

    Someone on the Facebook page commented that life with RA was like a huge game of “chutes and ladders”. Like you said, the RA will knock us down some days but we need to move across those spaces to get to a ladder and work our way up!

    Thanks again, I love when you comment on my articles! 🙂 ~Monica

  • VaughnT
    1 week ago

    I am almost 70 myself and was very fortunate to live a very active life until about 3 yrs ago when it hit me like a ton of bricks . I started on prednisone , whittled down to methotrexate, had a kidney out so then on hydrochloriquin . Just had a spell with prednisone for a boost …. My formula is water , drink lots of water and be on it or in it . Every time I set foot on our yacht , I feel a lot better . Every time I snorkel or swim , I feel better . I need to rest up a bit after but it’s what keeps me going and my crew are a great help . I went in the surf yesterday with my grandkids and am suffering today , oh boy , but I’m happy . Reading stories on here makes me hurt for the young set that have it , I only hope there is something out there for you guys , I can only say engulf the pain with a smile , laugh at every given chance , even forced helps , don’t dwell in misery , that is your enemy and don’t give up the fight to keep going ….

  • Mary Sophia Hawks moderator
    1 week ago

    Heartsong,
    Beautifully written. I think we are allowed days on occasion where we can focus on what’s lost.
    However, I am grateful to still be alive. Having this site for support has helped. I try not to compare my RA self to my former self.

    Mary Sophia, Rheumatoidarthritis.net

  • AllOfUS
    2 weeks ago

    Dear Monica,

    It’s sad to read the blog-post of your 10th RA anniversary. I have been only 5 month ago diagnosed with RA and had some sudden loss of hearing on one ear. The first symptoms appeared two years ago. I was also in denial and fearful for some time, especially with a future of Methotrexate deteriorating my body.

    But then I have changed my life. No more coffee! No alcohol, doing the AIP (Auto Immune Protocol), lots of exercise every day, I lost all my overweight, massive stress reduction via breathing, meditation and reducing work load, acupuncture, Vitam C IV treatment and most importantly going to counseling to be more mindful and grateful.

    I am free of medications since five weeks now and feel better than ever before. My fingers are still in some pain but I could live with it. I am trying now the Paddison Program, it seems to have the same effect as the AIP.

    And against all medical odds my hearing almost fully recovered which was my very best Christmas present.

    At this point in time I see RA as a gift. It makes me a better human being. I do all the healthy things I ever knew I should do but always had an excuse not to do them. Amazingly strangers start now smiling at me (maybe they did before but I was to grumpy to noticed it).

    Sure I am a bit older than you and lived already some of my dreams and my RA is (still) mild. In 10 years I may be at the same point as you are now, who knows.

    But it’s important to see what lies ahead, not that you might have missed some dreams. The future is always there, you can change things to a better alone from your heart with love. Don’t fake you are well, be authentic. Don’t let RA be your master, you are your master of your destiny, even you have no RA remission.

    When getting older there will be always some kind of disaster eventually. My house got flooded three years ago without any warning. Maybe I got RA from that trauma. A very close friend lost his short term memory (but fully recovered), that was really scary. It can happen all of a sudden to all of us.

    Don’t let you go down, you have 10 amazing years ahead and live your dreams. Appreciate all the other gifts mother earth already gave you and make the very best out of it.

  • Monica Y. Sengupta moderator author
    1 week ago

    Hey @allofus!

    I really appreciate your comment! I am glad you are feeling better! I know a lot of community members (unfortunately, I am not one of them yet) has had great results with lifestyle changes.

    For this new year I am going to be more patient with my body, make better choices regarding my health and hopefully I will also see changes!

    Thank you so much for sharing on my article. I really appreciate your kind words 🙂 ~Monica

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