I Have Sjogren’s Syndrome and I Am All Alone

THE MESSAGE WE RECEIVE..

FROM DOCTORS..

A Doctor or Two or Three Has: Spoken, Said or Treated You:

  • As if you are a hypochondriac
  • You’ve mentioned more than a few symptoms, time’s up
  • Don’t you think you’re spending too much time running from doctor to doctor
  • You really need to stay off of the internet
  • Live with it
  • Perhaps you should consider a counselor

FROM FAMILY..

  • Well, you look just fine
  • I’m tired/have that too
  • We all have days like that
  • If you’d just get out and exercise, you would feel better
  • You don’t look sick
  • You need to be more positive

FROM FRIENDS..

  • Yes, _______has the same thing, and she is doing great
  • I’m sure things will get better
  • It could be worse
  • Disease is all in your mind
  • You should try this amazing herbal remedy/supplement_______
  • Have you lost weight, you look great

The above comments are just a small sampling of what Sjogren’s Syndrome Patients hear on a daily basis. While some of these sentiments may be well-intended, the result just adds to the alienation we already have and continue to feel from a large number of people who cross our daily paths. It is not uncommon to feel lonely and as if no one really understands the full spectrum of what Sjogren’s brings to our lives. Unless you walk this unpredictable and painful journey each day, do you really have any comprehension of what we have been robbed of? Or worse, what we are left with?

The reason that I decided to bring this up today is because I once felt very much this way and for quite a long time. I am happy to say that I have moved beyond this familiar & frustratingly lonely emotional place (at least most of the time).

I would however, like to point out one of the most effective prescriptions that I came across which helped me to move beyond these feelings was discovering the Sjogren’s Syndrome National Patient Conference.

With all of my never-ending doctor’s bills & copius patient symptoms, I was not sure that I could even swing the travel & conference costs to get there, but decided to try anyway. That was two years ago.

I am so glad that I went to that conference. I arrived at the conference feeling like the alone & alienated patient that I described above..but I left as an empowered and happy person.

Knowledge, education and being surrounded by 400 other patients who totally understand and have experienced all of the symptoms & sentiments described above, cannot help but to reinforce how we perceive ourselves and our experience with this Sjogren’s journey.

As I prepare to attend my third Sjogren’s Syndrome Patient Conference, I am urging every Sjoggie that I know and those Sjoggies that I don’t know, to make it a priority to attend this conference. We all need the only kind of therapy that can be received by attending a conference with our fellow Sjogren’s Syndrome kindred spirits.

For more information regarding the upcoming 2015 Sjogren’s Syndrome National Patient Conference in Tampa, Florida, please visit:

https://www.sjogrens.org/home/get-connected/patient-seminars

If you decide to come, please make it a point to introduce yourself. I will be the one with dry eyes, nose, mouth, hair, skin & sinuses. Oh wait a minute…that’s all of us.

Have a Sjogren’s Foundation member point me out.

Sjoggies Unite!

Sjoggies Unite!

May the moisture be with you!

SjoDry and counting the days..sure hope to meet you there.

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About vitalsignspgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
This entry was posted in Searching for Answers, Sjo Sad, Sjogren's Advocacy, Sjogren's Syndrome National Patient Conference, Support and tagged , , , . Bookmark the permalink.

3 Responses to I Have Sjogren’s Syndrome and I Am All Alone

  1. Valerie Foreman says:

    Dear Sjodry,

    I cried when I read your post today. How familiar it sounds, as these are the messages that I have received too over the past three years with chronic illness. Needless to say, it has caused a much deeper depression and isolation. Even though lack of family support has been difficult, the lack of support and understanding from the medical community has been more devastating.

    Because I have the WILL to LIVE, these experiences have also caused me to become a better advocate for myself and has put me on a quest to find what I need. I am not totally out of my lonely place, but slowly and surely, inch by inch, I am clawing my way out and have begun to put together a good team of doctors.

    I wish that I could join you at the patient conference this year as I know it will be uplifting and informative. One day, I will see you there.

    Best wishes,

  2. Stephanie says:

    Yes. And even my favorite doctor who has made all the difference once said to me: “Well, you ARE getting older you know.” (I was 59 at the time.) arghh.

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