Skip to Accessibility Tools Skip to Content Skip to Footer

Don’t Like The Term “Disabled”

Having had to leave my job of nearly 25 years because of my RA, I am still struggling emotionally with it all over 2 years later.
For me, it was quite an emotional punch in the stomach to have to stop working. I had pushed through pain, fatigue and countless surgeries for years, all the while keeping up with what my job required. Finally in early 2012, I could feel myself struggling more and more to stay productive and satisfy what I needed to do. So hubby and I made the decision that I should retire.
I never would have thought that I would retire at 57! Unless I had won the lottery or something awesome like that. But this is the path that has been chosen for me.
So here I am today, still dealing daily with what my purpose is now. I have no connection with how having a job defines you which for me turned out to be bigger than I thought. I no longer share that “Oh no tomorrow is Monday” thing anymore.
I am making my way through this new life searching for a new normal. Don’t get me wrong. I do lot’s of things with my days. I volunteer, care for my elderly folks, craft and enjoy taking care of life for my hubby and myself. I am an avid seaglunker and won’t miss any opportunity to go to the ocean! That is where I can always center myself and find peace.
Through all of this, I have now been labeled “disabled.” I absolutely despise that word! Not just for myself but for anyone who has been given that label. None of us who are differently abled would have chosen this for ourselves I am absolutely sure! So why put such a stigma on this? Why can’t those of us with physical or mental issues just be called people? People who live our lives differently. There is no need to remind us about what we deal with by labelling it disabled! We are still loving, caring, productive individuals who want the same things in life as everyone does.

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

  • Jean Saytanides author
    4 years ago

    Hi Davida,
    Your story just breaks my heart. We all deserve the best healthcare that we can find to help us through this journey. I know that we are all strong, able women who just need a little understanding and compassion to give us that boost we need to fight through. Most particularly by our physicians. I am simply appalled when I hear someone has to still deal with medication issues years after being diagnosed. I guess I was blessed with a wonderful primary care doctor who put me in touch with some of the best doctors in our area. Oh it wasn’t all pleasant though. My first rheumatologist eventually stopped caring about what I was dealing with. So I did some research and found a wonderful new rheumatologist who treats me, the person, not patient # XXXXX which I have found a lot of doctors do.
    I am so pleased to have met all of you awesome woman through my story here and hope that our journeys remain as good or get so much better for us. We didn’t ask for this but it is part of who we are. Strong, beautiful woman who have so much to give to this world every day! We just need a bit of a hand doing that!

  • Davida Jones
    4 years ago

    My name is Davida Jones, I am 48 years old and the beginning of January 2013, my entire life changed as quick as snapping your fingers. I am a college educated woman that had a promising career. I had worked for the same company for the past 22 years. One day while at work, I felt very strange. I felt out of sorts when I woke up that morning, but you just brush is off and go about your day. After being at work for about 3 hours, I started suffering from what they call mini strokes. I was rushed to the hospital, put on a ventilator and woke up four days later only to be given, what at the time seemed to be earth shattering news. I not only had I done so many years being ms-diagnosed. Once I had come to my senses from being on a ventilator for four days, several doctors and specialist came into my room and I was so glad that my husband and my oldest son, who happens to be a nurse in the very same hospital I was in was with me. The doctor told me that I had RA, and that I have had it for years in his opinion and that I had the most aggressive form there is. He explained how quickly it can completely “disable” you. I was then told that I also had Fibromyalgia, Diabetes, Chronic Asthma and Hypothyroidism. I thought to myself, My gosh, is this a dream? Then I asked where the past four days had gone? They explained to me that I had a stroke, several mini strokes and that by the time I reached the hospital, I was in respiratory distress, unable to breathe on my own. Now my son being a nurse in the same hospital I was in, ironically works on the same floor that I was brought to, caring for patients in the same situation. Of course because of him being my son, he was not allowed to look at my chart, or be involved in my care at all. Now I am sitting here and my body doesn’t feel the same. I am in a lot of pain. I am swollen all over. My face looked like a moon pie. I could not walk, I could barely move. Over the nest 10 days that I stayed in the hospital, I was visited by every doctor known to man it seemed. I was visited by social services to see what type of care of was going to need at home. This talk scared the heck out of me. I felt like I was never going to be able to do anything again. So what I did is I contacted a Health Advocate with my insurance company. Of course they were aware to some degree of my condition because the hospitals do not wait to send out a bill. I explained to her how confused and scared I was and that I needed to discuss things with someone that is knowledgeable of my various conditions, that could help me to understand what to expect etc. They put me in touch with an advocate, which by the way, with my insurance company, their advocates consist mainly of either nurses or someone is licensed and is knowledgeable of the diseases that I have. I was so fortunate to have this benefit available to me, because most people do not. I had an advocate that came to me while I was in the hospital and by the time the 10 days were up and I was going to get to go home, I had a much better understanding of my condition and what steps to begin taking on the road to healing. This process started the beginning of 2013, it is now the end of 2014, and I have felt like a test subject. I have been through so many tests, so many exams, tried so many different medications. Right now I am not as angry as I was, but I can still taste bitterness. I can no longer work and was forced to retire. The financial burden that comes along with these conditions, well, I am sure you all know how that is. I did take methotrexate for a long time, along with steroids, enbrel and neurotin. The damage that was done by the methotrexate to my kidneys now sends me to the hospital due to renal failure, so I no longer take that. I have enlarged spleen, I have mild liver damage, and I never drank alcohol. I catch every infection that goes around, in spite of taking the flu shot, pneumonia shot and the shingles shot. I never know how I am going to feel. The things that I enjoyed in life the most, right now I can no longer do. But I think that what breaks my heart the most, is that my son and his wife had my first grand child in September, and I can only hold her for a short period of time before my arms give out on me. Medication makes me dizzy, so I always sit down and let someone hand me the baby because I am afraid I will drop her. Right now, I am still on steroids, neurotin and Humira. But the Humira isn’t working either. Now, my doctor wants to put me on Orencia. I have to decide, along with my doctor whether I will give myself injections, or if I will go to the out patient center at the hospital every week to have it by infusion, which is what my doctor wants me to do.
    I guess I am still angry. I am angry because people who can’t see a “disease” does not understand how you can look ok on the outside, but be so damaged and in so much pain on the inside. People can be mean at times. I guess that is why autoimmune diseases are called, “The invisible disease”. I would ask people to please, always be kind and compassionate to anyone that you cross paths with. Not because they may be ill, but because it is the humane thing to do. Sometimes, just saying, “I understand” can go a long way. But sometimes we just need to be held and allowed to cry. We are not asking you to fix us, we are asking you to not give up on us, while we fix ourselves.

    Respectfully,

    Davida Jones

  • Kelly Mack moderator
    4 years ago

    Thanks for sharing your powerful story, Davida. I hope that you find a treatment that works and provides you more relief. You are truly using lots of good resources and your network of support on this fight against RA and your other illnesses. Stay strong! And very much hope that you find information and support in this community of RA patients. Best, Kelly

  • Marcia Parker
    5 years ago

    Jean, I also retired at age 57. Working had become such a struggle. Then I was then diagnosed with Lymphoma. At first I always thought I would go back to work but since 2011 my health has been in decline. And yes, I still struggle with the idea of being disabled. Living with RA has been much more of a challenge then my cancer. From one day to the next I never know what this disease is going to take from me. So yes, I grieve my loses and continue on with what I can do, counting my blessings along the way. Like having a website like this to understand, inform and encourage.

  • claudia jarratt
    5 years ago

    Since my lack of stamina and ability to stand or walk for an extended length of time don’t show, I’ve come to embrace the term disabling. I’m not disabled in my ability to love, to be honest, to appreciate a good book and the natural world. But my muscles are disabled.

    I agree that coming to grips with ‘what I can do now’ involves grieving what I thought my life would include. But folks outside my body seem to understand my limits better when I say, ‘I can’t do that’ or ‘I’m having a disabled month, or winter, or year’.

  • Vicki Heckroth
    5 years ago

    Hi Jean,
    I like you am having a hard time with the term disabled. I am the same person I was before. I just can’t do as much physical stuff. I became unable to work three years ago at the age of fifty. The hardest thing I had to do was apply for disability and permanently retire at such a young age. This new normal is different but we will all learn to live with it. I have had RA and several other things since I was 41. I continued to work until I was 49 and just could not do it any longer. My health, both physically and mentally, was deteriorating fast.

  • Jean Saytanides author
    5 years ago

    Hi Vicki,
    Wow. Are stories are a mirror image of each other! I retired at 57 after battling RA for any years. It’s so awesome to hear from folks who deal with the same things on a daily basis. I wish you all the best!

  • Mariah Z. Leach moderator
    5 years ago

    Hi Jean ~ I think Ali is right – finding your “new normal” is never easy. And I think it is also important to point out that it is ok to be sad or grieve about changes in your life. That’s an important part of the process and I understand what you are going through having done it myself – albeit under different circumstances. Please hang in there and remember that we understand what you are going through and we are here to support you!

  • Jean Saytanides author
    5 years ago

    Thank you Mariah. That means more than you know!
    Jean

  • Ali
    5 years ago

    Finding your “new normal’ is never easy. I am in the same boat as you. You are not alone.

  • Jean Saytanides author
    5 years ago

    Hi Ali,
    It is so good to hear from you. Even though I know there are other folks who struggle hearing from you makes me feel so much better!
    Be well.
    Jean

  • Poll