Chronic Illness, Sjogerns Syndrome

Advocacy for Rheumatological Diseases

I’m waiting.  Waiting is the norm for people with chronic illness.  We wait for diagnosis, appointments, referrals, medications to work, and much more.  After being diagnosed with Sjogren’s Syndrome, dismissed by my 5-year Rheumatology Nurse Practitioner, and now waiting for an appointment with a new Rheumatologist,  all I do is wait.

Advocacy

I’ve been waiting since 2000 (and before) for help for my chronic illnesses.  I’ve seen 5 Rheumatologists during this time with no help.  Now, because I was dismissed from the very place that should have helped me, I’m waiting again.

I called the office that received my referral, and they basically said, “Don’t call me, we’ll call you”.  This doesn’t sound too good.  But, if you read the research you find that this is the normal problem in Rheumatology.

After reading 5 research studies from 2012-2017, I’ve found very discouraging results to the problem with getting help from a specialist in rheumatology.  The average time of getting an appointment after referral is 3 months.  Most people wait at least 6 months.  Patients without clear diagnostic criteria can wait up to a year.

These are patients with inflammation and disease.  Rheumatological diseases account for the 2nd largest group of disabled people.  But, there is a severe shortage of Rheumatologists.  Why is that?  I don’t really know.  The study statistic that stood out to me was that 70-73% of patients with these diseases are women.  Need I say more?

wheelchair

The longer these diseases go untreated, disease progression will create more people with disabilities.  Our healthcare system is in terrible shape and the people who are suffering are largely women.  We have been dismissed, ignored, and mistreated by doctors and we are becoming disabled.

I am a perfect example of this.  I have been told to: take happy pills (when I wasn’t depressed), lose weight, exercise, and all of this would just go away.  Over the years, my health has gone from excellent to horrible.  I can no longer: grocery shop, wash dishes, housework, have a career, and much more.  I now have nerve damage that seems to worsen by the day.  I have miserable nerve pain that has gone from feet tingling in 2011 to awful nerve “zaps” all over my body that feels like I’m being stung by a sweat bee.

Nerve damage can’t be undone, but it could have been prevented with proper treatment.  It’s hard to not be angry at my situation.  I know many of you have gone through this or are going through this.  What I have to accept now, is that this is permanent.  These problems should not exist when there are legitimate treatments available.

doctor

The recommendations that I’ve read said that the American College of Rheumatology should promote the field to graduates, offer more fellowships to specialize in this area, and expand the role of Nurse Practitioners in this area.  Advocacy can center around electing politicians who understand and support the needs of Rheumatology.  We can also write, email, or call our local, state, and federal elected officials and voice our opinions.  RheumPAC is a political pac that works to improve the rheumatology patient and caregiver issues in our country.

If you’re struggling with any of these issues, I hope you’ll join me in trying to find ways to advocate for yourself and all of us who need good care for Rheumatological Diseases.  If you know of good ways to advocate for this, please share them with me!

@2018, copyright Lisa Ehrman

Wiley Online Library 

RheumNOW

Rheumatology.org 

NCBI 

RheumatoidArthritis.net 

Rheumatology.org

Disclaimer: I’m not a medical professional.  This post contains my opinion.  If you have a medical need, please consult your personal physician.

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2 Comments

  1. Debbie P

    My girlfriend in her early forties has this and it stinks.

    1. xaoti

      Yes, I feel terrible for anyone who has it 🙁

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