Seminar: Who Am I Now? After The Diagnosis

September 11, 2012 by  
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tiffany Seminar: Who Am I Now? After The DiagnosisTiffany Westrich

Does invisible illness make you question your identity? Do you often find yourself asking, “Who Am I Now?” or find yourself trying to explain this to others who do view you as ill? Join Tiffany as she provides tips to help you understand your ‘new identity’, empowering you to begin to overcome the invisible stigma and teach others what you see isn’t always what you get. Instead of asking yourself “Who am I now–after this diagnosis?” She will point you toward the real question you should be asking yourself.

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leave comments1 Seminar: Who Am I Now? After The DiagnosisAudio file – Tiffany Westrich

tiffany Seminar: Who Am I Now? After The Diagnosis

Tiffany Westrich

Tiffany Westrich is the Founder and CEO of the International Autoimmune Arthritis Movement (IAAM), the 1st and only nonprofit to focus solely on the primary joint diseases that include an autoimmune component. She is one of two IAAM Officers who serves on the Advisory Panel, is President of the Board of Directors, and is a key participant in creating and managing every facet of the organization. IAAM is 100% created and run by those affected by these diseases and the programs are created to coordinate with other nonprofit efforts globally; so IAAM is designed to collaborate, not to compete, with other groups in order to best serve the community.

IAAM established World Autoimmune Arthritis Day (WAAD) in January of 2012, which serves as an annual, online Virtual Convention focusing on awareness and education. This event is global, uniting dozens of nonprofits and support groups around the world who all provide resources for those seeking out Autoimmune Arthritis information. Tiffany acts as the Event Coordinator and Host, as well as monitors and participates in all live presentations and chat sessions. The event was such a success that IAAM was invited by the European League Against Rheumatism (EULAR), the Event Coordinators of World Arthritis Day (WAD), to bridge a WAAD and WAD partnership which aims to bring more focus to the Autoimmune Arthritis diseases.

IAAM has only been a 501c3 nonprofit since May of 2011, but they continue to make waves in the community with their cutting edge programs and initiatives. Current programs include the Media Awareness Hotline, the Juvenile Arthritis Awareness Movement (which will grow into a separate movement for each disease under the Autoimmune Arthritis umbrella), and the Medical Awareness program, which is in development and will branch into educational services for practitioners and medical schools around the world. They are also working with researchers in the arthritis in autoimmune disease community to establish better understanding about the similarities between the Autoimmune Arthritis diseases* , which in turn should promote earlier recognition, diagnosis and treatment.

Tiffany also serves in the NIAMS Coalition and has flown to Washington DC as a Patient Advocate with both the American College of Rheumatology and the Arthritis Foundation on several occasions. She often participates in a variety of panels, including most recently as a Consumer Reviewer for the American Institute of Biological Sciences (AIBS), assessing clinical trial studies for a variety of arthritis diseases. In addition to public and online advocating, Tiffany writes a blog, Autoimmune Arthritis = Autoimmune Disease+Arthritis, and has been published in a variety of sources such as MyRACentral.com and The Rheumatologist. She has worked professionally as a public speaker and continues to speak at events pertaining to Autoimmune Arthritis awareness and education, including hosting presentations at the Arthritis Foundations’ JA Conference 2012 and creating and online, interactive classes in awareness and wellness education.

*Autoimmune Arthritis diseases include Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Sjogren’s Syndrome, Systemic Lupus Erythematosis, Juvenile Arthritis, Still’s Disease and also included under this umbrella is Mixed Connective Tissue Disease and Undifferentiated Connective Tissue Disease/Undifferentiated Spondyloarthropathy. These are the diseases, as classified by IAAM and a team of rheumatologists, that meet the criteria for primary joint diseases with an autoimmune component. While other diseases are autoimmune and can involve the joints, given they are not primary joint diseases, but rather primary gastrointestinal or vascular or muscular, etc, they are considered “Autoimmune Arthritis related diseases”.

Get to know Tiffany! Tiffany’s blog | Tiffany on Facebook | Tiffany on Twitter | World Autoimmune Arthritis Day website IAAM website | IAAM on Facebook | IAAM on Twitter | WAAD on Facebook
WAAD on Twitter

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  • http://www.facebook.com/carol.b.goodman Carol B. Goodman via Facebook

    I was dx’ed so young I don’t remember what it’s like not to have RA. The question on my mind has always been “Who could or would I have been without RA?” And more important, would I like that person?

    • http://www.IAAMovement.org Tiffany Westrich

      Hi Carol,

      I can’t tell you how many people I know who were diagnosed so young and have the opposite issue… Who Am I and Who Would I Have Been? I think that would be an interesting topic to cover, wonder if I could host an interview of sorts for those who live with this question.
      I know my presentation was geared to those diagnosed a little later but I’m hoping my suggestions for explaining it to families/friends, etc., can lend some assistance.

  • Annette Gasbarro via Facebook

    YES- I think a chronic and disabling diagnosis makes you question your identity. People have a hard time understanding what you are going through. I think it takes a very special person to truly understand. It isn’t only the “label” – but the changes that you experience, and how rapidly they progress. The fact that an illness is invisible makes it SO hard for people to understand– particularly as it progresses, or as you go through changes you are unable to articulate.

    • http://www.IAAMovement.org Tiffany Westrich

      Annette,

      Yes! Things change so fast and you have to adjust, then explaining it to others, especially when you don’t look sick? It’s a real issue! I wrote an entry on my blog about how I hate baseball fields now. Ok, I don’t “hate” the field in general, I hate walking by them because they remind me of playing softball, which I can’t do anymore.
      My best suggestion for helping those to understand is to find something they can relate to- having the flu, for example, if your disease has this symptom. If they’ve had the flu then it’s something they understand. You can pair real medical literature that says “flu like symptoms”. When people can’t SEE it they find it difficult to relate to pain. Those who don’t have invisible diseases really only relate pain/illness in themselves with what they can see: bruises, flu, injury etc. Finding a way to relate to a symptom they understand is key!

  • http://brokenyetblesseddotcom.wordpress.com/ Tami

    Tiffany,
    Thank you so much for speaking on this subject. I feel like most of my frustration lately has been “losing myself”-especially in the last 5 years that my CRPS/RSD has progressed & spread. I really needed to hear your experiences, and your advice today-and I imagine many others have been blessed by your seminar. I know where to start on “finding myself”..or maybe just “RE-defining myself”. Take Care!!

    • http://www.IAAMovement.org Tiffany Westrich

      Hi Tami,

      I’m SO glad this advice may help you. It helped me tremendously! I used to be sad a lot on what I couldn’t do…but when I took out the element of “well, I can’t play sports so now what” and changed it to listed what characteristics about playing sports I liked- teamwork, challenges, etc, well then I could find activities that filled that need. It’s an adjustment but it really does help!

  • http://berrymorinbits.blogspot.com Rona

    I had a fantastic therapist who specialized in chronic pain patients. She took me through the grieving process and told me to read Laura Hillendbrand’s essay. Those were my Aha moments!
    My current issue is that when people ask me what I do, I answer “housewife” they have no idea what that is. I’m not joking here. And I’m not a stay at home mom because my kid is 20 yrs old. So, till I figure that out I’m a Rona who manages house and lives! lol

    • http://www.IAAMovement.org Tiffany Westrich

      Rona,

      I love your role- “I’m a Rona who manages house and lives”. Yes you are! So you are a manager and I bet are really good at it too! I’m glad to hear your therapist recognized your need to grieve, it is a grieving process. Unfortunately not everyone gets this advice and tools to move on and get stuck in a “I can’t do this, now what” slump. Keep up the positivity, you rock!

      • http://berrymorinbits.blogspot.com Rona

        Thank you Tiffany. You rock too!

  • Melissa Hipwell via Facebook

    thanks SO much for posting this. I have been struggling with this very question for the past year. Tiffany’s insights not only have given me comfort in knowing I’m not alone in these challenges but also have given me a better understanding of this process as well as new ways of how to cope and adjust. I cannot tell you how incredibly encouraging, helpful, and inspiring this video has been to me!

    • http://www.IAAMovement.org Tiffany Westrich

      Melissa,
      I cannot tell you how happy I am to hear this has helped you. I taught college for several years and did these types of exercises to help students understand their thought process in design, so when I was struggling I thought, “why not use the same method and write out what I like about my hobbies I no longer can do instead of the exercises I had them do to write out about why they liked a design style, etc”. I tried it myself and it really helped! People ask me often how I am so positive and I believe this is a major reason why… because I found myself in regards to what I like and realized that just because I liked it on one facet (sports) doesn’t mean those characteristics can’t be toggled into another hobby? So instead of saying I can’t do that now I say I CAN do this!?

  • Melissa Hipwell via Facebook

    thanks SO much for posting this. I have been struggling with this very question for the past year. Tiffany’s insights not only have given me comfort in knowing I’m not alone in these challenges but also have given me a better understanding of this process as well as new ways of how to cope and adjust. I cannot tell you how incredibly encouraging, helpful, and inspiring this video has been to me!

  • Jody Preister

    Thank you, Tiffany. I am a West Nile Virus Survivor since 2003 and now have a disfunctional immune system(decreasing lymphocyte cells) because of it which has caused many health issues and promises to only get worse. I get infections easily and my immune system doesn’t fight them very well. Currently I am struggling with viral costochondritis which for the past 2 years has changed my life and my ability to function as fully and as well as I used to. I am only at the beginning of discovering my invisible condition and the impact it is having on my life. I can sooooo relate to the identity thing and appreciate so much the exercise you offer to help in the process of remembering who I was and understanding who I am NOW. There are many, many of us WNV Survivors who are dealing with the residual effects of the initial virus infection but only a very few doctors and researchers are noticing and helping us. It is extremely frustrating! You are an inspiration to me. Perhaps one day I will be helping others, too. Thank you! I look forward to sharing your video with others.

    • http://www.IAAMovement.org Tiffany Westrich

      Jody,

      First, we have different diseases but my RA started with chronic costochondritis so I know what that is like. I went to the ER twice thinking I was having a heart attack!
      I was a college teacher for 8 years so my style of trying to help others typically deals with exercises that involve writing out ideas. I found this helped me A LOT so I really do hope you can find some new avenues and ways to “rediscover” new activities to fill voids. Thank you for sharing too, I sincerely hopes this helps many people!

  • http://www.facebook.com/InvisibleIllnessWeek Invisible Illness Awareness Week via Facebook

    So glad it was helpful. I thought she did a great job explaining all those mixed up emotions. Carol,I have had RA since 24 so I understand that of who would I have been. Thankfully,I feel like God did “make a better me”–I think I would have been more selfish, and my work would not have been nearly fulffilling–but I still wish for some carefree days and a body that works.

  • http://www.facebook.com/InvisibleIllnessWeek Invisible Illness Awareness Week via Facebook

    So glad it was helpful. I thought she did a great job explaining all those mixed up emotions. Carol,I have had RA since 24 so I understand that of who would I have been. Thankfully,I feel like God did “make a better me”–I think I would have been more selfish, and my work would not have been nearly fulffilling–but I still wish for some carefree days and a body that works.

  • http://www.facebook.com/InvisibleIllnessWeek Invisible Illness Awareness Week via Facebook

    So glad it was helpful. I thought she did a great job explaining all those mixed up emotions. Carol,I have had RA since 24 so I understand that of who would I have been. Thankfully,I feel like God did “make a better me”–I think I would have been more selfish, and my work would not have been nearly fulffilling–but I still wish for some carefree days and a body that works.

  • http://www.facebook.com/InvisibleIllnessWeek Invisible Illness Awareness Week via Facebook

    So glad it was helpful. I thought she did a great job explaining all those mixed up emotions. Carol,I have had RA since 24 so I understand that of who would I have been. Thankfully,I feel like God did “make a better me”–I think I would have been more selfish, and my work would not have been nearly fulffilling–but I still wish for some carefree days and a body that works.

  • http://twitter.com/berrymorin/status/245907319546867714/ @berrymorin

    check out the Who Am I? seminar http://t.co/BHqQtr2w #illwk12 #invisibleillness #chronicpain

  • http://www.IAAMovement.org Anthony J Hillelson

    This is an outstanding video, Tiff! As always, you have pulled together through your own life experience the very way to redefine who we are after the devastating news of chronic illnesses. I would recommend this to everyone who has gone through this or are in the middle of going through this most dificult experience or who have just been told that their lives have been disrupted with these beastly diseases.

    Thank you once again for sharing with the world the ways and means of becoming the very best man or woman or child you can be!

    God Bless You for all the outstanding and passionate work that you offer us all every single day of your life.

    • http://www.IAAMovement.org Tiffany Westrich

      Thank you Anthony :). I feel blessed that I’ve had the opportunity to teach for so many years, then as I haven’t been able to teach any longer that I am still able to toggle this skill into helping others with invisible disease.

  • Pami Ballington

    Thank you for sharing this yesterday. Figuring out who I am now has been one of my biggest issues (aside from the medical ones). Thanks for the practical tips & the reminder that I’m not the only one! God Bless You!

    • http://www.IAAMovement.org Tiffany Westrich

      Pami, YES, it’s been my biggest issue too. I didn’t figure it out right away, it took me doing these exercises to start to heal. I’m still not 100%, I mean this is an enormous transition of self, but I am MUCH more positive and enjoy new ways of experiencing life now :). I used to teach college and would do an exercise with the students where we’d brainstorm on paper why they liked a design theme and I thought, “why not try it for myself?”…and it worked! So I’m happy to share. By all means feel free to keep in touch and let me know how it’s working with your personal journey :).

  • http://brainlesionandme.wordpress.com Rhiann

    Thank you so much for this talk- as a Psychology graduate this was one seminar I was most definitely interested in. It was engaging, informative and thought-provoking and many of the points I could really relate to and I shall be going off and finding my new identity and what I can do with the skills I have.

    A brilliant presentation – great job!

    • http://www.IAAMovement.org Tiffany Westrich

      Rhiann,

      Well, thank you, that sure means a lot coming from a Psychology graduate. I created this exercise based on an exercise I used to do as a college instructor- I taught advanced design so it was my job to get the students to engage their inner creativity and in doing this they had to understand really WHY they liked this theme, other than just what is obvious on the surface. So it engages a person to look deeper and understand the attraction. I figured, ‘why not try this for myself’ and it worked! I mean, as you know, the mind isn’t going to heal overnight, but this really did jumpstart me in a positive direction. I have a blog (just started only a few entries) and I wrote about how I still hate walking by baseball fields. Everytime I see one I think about how I can never play softball again. BUT, I then refocus and think of those things I liked about it and transfer those things into my current life.
      Please feel free to keep in touch, I’d love to hear more about your thoughts on this strategy as it relates to your background!

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