Open Letter to All Health Professionals Treating Clients with Fibromyalgia

Open Letter to Health Providers

I usually never write a letter of complaint after I have a(nother) bad experience with a health provider. I just want to move on. In some cases I am afraid commenting will affect my treatment. In others I just feel disillusioned that it will make any difference.

I am coming up on my four year anniversary since diagnosis and I feel a sense of responsibility, that after all my experiences I should raise awareness about the basics of safe, competent, patient centered care. So I am posting a letter I wrote to an acupuncture clinic I tried last week, which was an epic failure, in the hope that a health provider out there reads it and learns a thing or two!

Good afternoon,

I would like to cancel my appointment next week. Treating chronic pain patients requires specific skills and I would like to pass on a few suggestions for improving your clients’ experience:

– after the acupuncture needles are put in place, inform the client how they can call for assistance if they need to. I was in significant pain because of the lying position I was in and could not get help during the last 10 min of waiting.

 inform the patient about each procedure beforehand, what it will be like and what the possible consequences might be. Sarah (name changed) asked if I would like to try cupping and after I agreed she began the treatment before explaining what it entailed. Furthermore, instead of testing one or two times she did it all over my back. Since then, I have had chronic headache, a pain flare and deep bruising. The definition of my condition is increased pain sensitivity so an experienced practitioner should have trialed the treatment on the first visit. I have had to see my physiotherapist to undo the muscle spasms caused by this treatment.

–  I was given a herbal remedy but the ingredients were not explained, nor were the benefits or possible side effects described. This is the equivalent of my doctor saying ‘here is a prescription’ without telling me what it is, why, or what it should do! I have a lot of sensitivities to drugs and supplements, and often need a  lower dose than normal but was not given an opportunity to discuss this in private.

All of these examples are ultimately a failure of patient-centred care – making the client feel like a person rather than a diagnosis –  and therefore,  I will not be returning to your clinic.

Sincerely…

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7 thoughts on “Open Letter to All Health Professionals Treating Clients with Fibromyalgia

  1. Damon Lifestyle Therapy says:

    This is a wonderful letter. I’m sorry you didn’t have a better experience at the acupuncture clinic. That fact that you feel afraid sometimes to voice your comments and needs before, during, or after treatment, is a problem that needs to be addressed in healthcare today. I wish I knew how to fix it. I feel that if you voice your comments politely and respectfully, and the provider gives you a subpar response, it’s time to find a new provider. All the best!

  2. Valerie Brock says:

    Oh my, I know this feeling all too well. I am in the middle of Lyme Disease treatments and much of the medical community in the state of NC where I live, do not believe in Late Stage Lyme Disease. It is an awful feeling, knowing that I cannot openly talk with all of my doctors about my Lyme. I also have fibromyalgia and feel almost identical about discussing my concerns about my condition with my doctors as well. That’s a great letter by the way! Just wanted to drop in and thank you for visiting with me over on my blog at lilacandlyme.blogspot.com. I am excited to meet so many wonderful bloggers in Chronic Illness Bloggers Network too! It helps me not to feel so alone. =)

    • Katarina Zulak says:

      Thanks for your comment and I’m glad to connect! Disbelief in the medical field is so frustrating for patients. I’ve been fortunate to find a good team at a pain clinic after some bad experiences but there can still be insensitive or paternalistic health care providers even if they do acknowledge Lyme or FM exist!

  3. Mary McDonald says:

    I have being seeing my present rheumatologist for about 15 years now. Little did I know that his little resident helper that day was a family member in the same medical field. When she, the helper, suggested that my symptoms may be psychosomatic, I was naturally defensive. My Rheum. was standing there and snapped at me for the first time EVER. Obviously this was in his helper’s defence somehow. In the end his helper AND I both apologized to each other but Man! I’m thinking it’s not a good idea to work so close with family members! The way I found out was when she signed my prescription. And the name was one I had never encountered before, so I was able to put 2 and 2 together. I hope it’s just one of them, not both, the next time I go in for an appointment.
    PS. I am diagnosed with GERD, central sleep apnea, asthma, Celiac disease. Sjögren’s syndrome, vasculitis, Fibromyalgia and RA. 😕

    • Katarina Zulak says:

      That sounds like an unprofessional reaction on the part of your rheum – I’m sorry that the resident spoke to you like that! Hopefully it doesn’t happen again. Thanks for sharing your experience!

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