Loss of Self

By Stephanie Gonzalez

1 min read

I was diagnosed with seronegative RA in 2019 at the age of 36.

Diagnosed with seronegative RA

What started as unusual tiredness and pain in one joint on my pinky finger turned into an awful debilitating disease.

I had to quit the job that I loved a mere 3 months after diagnosis.

I was always active with my husband and kids beforehand. We would go on walks, go bike riding, rollerblading, as well as visiting theme parks often.

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Has RA taken my identity?

As my bike and rollerblades sit untouched I have struggled to figure out who I am now. What kind of wife and mother can I manage to be?

I can keep up with my husband in a grocery store nonetheless a theme park. Coming out of the isolation of COVID I find that there aren't many things I can do.

I thought that the infusion medications would be able to bring some of that back but I've found that is simply not the case. I am trying to stay hopeful but it's difficult.

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Jo Johnson Moderator & Contributor
 @stephanie_gonzalez We have a lot in common! RA definitely impacts our sense of self. I try to think of it as changing not losing. But sometimes, it truly does feel like a loss. Grief is definitely part of chronic illness. I too had to quit my job. It took a long time for me to get diagnosed and I actually retired the month before my diagnosis. I've struggled finding the best treatment. I recently moved to live near my grandchildren and I am battling to find the energy and mobility to keep up with them. When I trialed my first biologic I was ready to feel and dance like the people in the ads. That hasn't happened for me yet. I've had mixed results on my most recent biologic infusion, but I think that a lot of that was do to exterior factors. I had a hard week with appointments and treatments, but somehow I got some good news yesterday and found myself feeling hopeful again this afternoon. I encourage you to "feel the feels" but not give up. Find a moment for something that gently fills your cup, deep breath and I Hope you feel Hope again, Jo (moderator)
1. Stephanie Gonzalez Member
 <inline-mention username="Jo Johnson" user-id="3158858"/> Thank you! I'm so glad that you have renewed hope. I know I'll find my way there again some day.
Richard Faust Community Admin
Hi <inline-mention username="Stephanie Gonzalez" user-id="4473068"/>. Your frustration with the sudden onset and lack of progress in controlling the RA is certainly understandable. I noticed you mentioned infusion medications. Have you been on more than one? Finding the right treatment is, unfortunately, basically trial and error. Fortunately, there are now quite a few treatment options available (see: <a href='https://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra' target='_blank'>https://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra</a>) and it is important to speak with your rheumatologist about whether and when your treatment plan should be modified to try to get better control. Please know that people here understand. Hoping you get some answers and relief soon. Best, Richard (RheumatoidArthritis.net Team)
1. Stephanie Gonzalez Member
 <inline-mention username="Richard Faust" user-id="3227544"/> I was on Simponi Aria for over two years when it stopped working. I just started Actemra a couple of weeks ago. I know it takes time to see if the medication is going to work. That is the part that frustrates me most.
Daniel Malito Moderator & Contributor
<inline-mention username="Stephanie Gonzalez" user-id="4473068"/> I also have sernegative RA and I have had it for thirty years. When you are first diagnosed it's an overwhelming time for sure and it takes a while to find out a new normal that works for you. Does that mean you aren't who you are any longer? No, it just means that you now have a new, let's call it a "wrinkle" to add to your life - which happens to everyone whether they are chronically ill or not as life gets lived. I know it seems dismal right now, but I assure you that most of us eventually find a routine that works for us. Are there bad days? Sure, but in general you find a way to work within the confines of the RA. In the meantime, let us know if there's anything we can do - you are not alone. Keep on keepin' on, DPM
1. Stephanie Gonzalez Member
 <inline-mention username="Daniel Malito" user-id="3160778"/> Thank you. I appreciate your kind words. I enjoy reading your articles. I always laugh and any day I can laugh even a little is a good day.
starducks Member
I am seronegative too. Sometimes I am in denial because the bloodwork doesn't show why my hands are a mess. I just started Enbrel and I am holding my breath. I went from 14 swollen/tender joints in my hands to 2 in one month. I can even cross my fingers. I don't know if this will be a lasting solution, but for now I am breathing in the pain-free deep! I so hope you find something that works.
1. Lori Foster Community Admin
 I am thrilled that Enbrel is helping, <inline-mention username="starducks" user-id="4692084"/>. I hope it continues to be effective for you. How exciting! Best wishes. - Lori (Team Member)
Stephanie Gonzalez Member
I'm the same way. My blood work will look good but my pain is intense. I hope you continue to do well on Enbrel. I'm going for my second infusion of Actemra tomorrow. Aside from some mild side effects so far so good. Wishing you the best.
1. christine.laaksonen Community Admin
 <inline-mention username="Stephanie Gonzalez" user-id="4473068"/> oh I do hope that you start to feel some relief soon! Please, if you're comfortable, keep us posted with how you find the Actemra. Wishing you a gentle day. -- Warmly, Christine (Team Member)
Lynn Marie Witt, MSOT Moderator & Contributor
<inline-mention username="Stephanie Gonzalez" user-id="4473068"/> I just saw your post and wanted to check in to see how you are doing/feeling? Please reach out anytime. You are not alone on your journey. I too have RA and I was diagnosed in my twenties. I can definitely relate to what you wrote about. Just Keep Swimming...Lynn Marie, "RheumatoidArthritis.net Team Member" 
1. Richard Faust Community Admin
 Hi <inline-mention username="Stephanie Gonzalez" user-id="4473068"/>. Hoping right there with you. Everyone's experience is, of course, different, but I know some people who swear by Orencia. Please feel free to keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)
2. Lynn Marie Witt, MSOT Moderator & Contributor
 <inline-mention username="Stephanie Gonzalez" user-id="4473068"/> thank you so much for reaching back out. I am sorry to hear that your were experiencing such bad side effects from the medication, especially since you did experience some relief of symptoms. I know I was on a medication called Rinvoq for awhile. I have attached an article I wrote about my journey with the medication.https://rheumatoidarthritis.net/living/rinvoq-treatment-review. Months after I wrote the article my liver enzymes became extremely high. My rheumatologist monitored and unfortunately, I had to come off of it. If I am being completely transparent, I was devastated mentally and emotionally. Then add how I physically felt not having the medication. We switched to Kevzara injections. It took a little while to see results. It is helpful! So I have the same hope that you will find the right medication to help manage your RA. Sending positive vibes that the Orencia is helpful ,with no side effects. On a side note, I know quite a few people that have seen positive results while taking the medication. It sometimes takes a little while to kick in. Please keep us posted on how you are doing. I know there are many in our community who have taken or are currently taking Orencia. It sounds like you have a good relationship with your Rheumatologist and are well monitored. That is so very important. Sending a gentle virtual hug your way and please know you are not alone! Just Keep Swimming...Lynn Marie, "RheumatoidArthritis.net Team Member"