ME/CFS Dealing With Unhelpful Health Professionals Part 1

In this first part, Coach, Trainer and former sufferer of ME/CFS and fibromyalgia Simon Pimenta explores some general strategies for dealing with Health Professionals who are not treating ME Sufferers in a professional manner. In Part 2, we look at specific strategies should you wish to respond to them. You can read Part 2 here

A while back I wrote an article on the topic ‘ME/CFS/FM: Dealing With People Who Don’t Understand’.

I received a response from a reader asking what if the person who doesn’t understand is a Doctor or Health Professional. I felt that this warrants a blog article rather than a brief response, as it is something that I keep seeing people post about on various forums.

RESPECT
First and foremost, you have the right to be treated with respect. Just because you have this condition, this does not give anyone the right to treat you otherwise.

Furthermore, Doctors and other Health Care Professionals have a duty to treat patients with care and skill. There is research that shows that how a Doctor interacts with the patient can have an impact on their health and wellbeing. A review of clinical trials found that where health care providers received training on patient interaction, including general skills (empathy, eye contact) and specific skills such as goal setting, a small but statistically significant difference in health outcomes was observed, including measures such as blood pressure, blood sugar and pain. Most people don’t need researchers to tell them that a Doctor can influence their blood pressure positively or negatively!

Lead author of a review of clinical trials John Kelley, a psychologist at Massachusetts General Hospital said “Our results show that the beneficial effects of a good patient-clinician relationship on health care outcomes are of similar magnitude to many well-established medical treatments,” Many of these medical treatments, while very important, need to balance their benefits against accompanying unwanted side effects. In contrast, there are no negative side effects to a good patient-clinician relationship.”

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0094207

The National Institute of Clinical Excellence (NICE) guidelines cover topics such as general principles of care, management strategies after diagnosis, management of setbacks/relapses and principles of care for people with severe CFS/ME and other issues, and states the following:

1.1.1.1
Shared decision-making between the person with CFS/ME and healthcare professionals should take place during diagnosis and all phases of care.

The healthcare professional should:
Acknowledge the reality and impact of the condition and the symptoms.

1.1.3.1
Healthcare professionals responsible for caring for people with CFS/ME should have appropriate skills and expertise in the condition.

1.1.3.2
Every person diagnosed with CFS/ME should be offered:
acceptance and understanding

NICE Guidance

If all Health Professionals adhered to these points, then the quality of care for people with ME would be massively improved!

If you are experiencing ME, it is understandable that having to encounter with a Health Professional who is dismissive or who clearly doesn’t understand the condition can be deeply upsetting, when you are feeling unwell and vulnerable.

I have read a number of posts from people who said that the ‘Health Professional’ stated that the alternative treatments they were trying were a waste of money. This is incredibly unprofessional! I am sure that the ‘Health Professionals’ did not have any research to prove their point of view.

Strategies For Dealing With Unhelpful Health Professionals

First and foremost, if you have an unpleasant encounter with a ‘Health Professional’, it is easy to take it personally. Don’t! Their behaviour has nothing to do with you! They clearly have issues. As I wrote in the article ‘Dealing With ME/CFS/FM: Dealing With People Who Don’t Understand Is this the behaviour of a happy, contented person who is having a great life? Clearly not. People who are generally happy, well-adjusted etc. don’t have a need to make others feel uncomfortable, or behave in an over-opinionated way.

At some level, as well as feeling upset, it may that these experiences may give rise to feelings of anger, or pure rage. For some, it might be easy to be aware of these feelings. Others might be less aware of these feelings, especially if you are good at suppressing such emotions. However, you may notice feeling utterly drained by the experience, which may be a sign that you are doing so. When I was suffering from ME, there were times when I was good at burying these feelings, but I realize now that doing so was at a cost to myself: I would feel exhausted afterwards.

Getting angry can be debilitating, which is why I suspect some sufferers try and avoid doing so. However, what I learned from 8 years of ME was that sometimes I needed to get channel my anger and not tolerate unprofessional behavior from ‘Health Professionals’. I would find it tiring taking action, for instance writing a letter of complaint, but I suspected I would have felt just as tired, or perhaps worse, by not doing so.

Top Tips:

1. Expect Respect
Expect to be treated with respect and courtesy. It is totally reasonable to be surprised, shocked or angry if you are not treated in this way. Adopting this mindset is a good start.

2. Pause For A Moment
If someone says something that you feel is inappropriate take a deep breath and pause. Consider how you feel. Shocked? Surprised? Hurt?

3. Do I Respond?
Decide if you want to respond there and then. Remember that sometimes someone is just having a bad day, and if we do challenge them on the behaviour, it does give them the opportunity to apologise and correct their behaviour.

4. If You Don’t Respond
If for whatever reason, you don’t respond in the moment, that’s ok. Avoid giving yourself a hard time. However, consider what would be a useful way of getting it out of your system, whether by:

• Writing it down in a journal
• Recording it in some details: what happened, the date, name of the Health Professional, just in case you want to take it further at a later stage.
• Talking to someone who is a good listener
• Posting experience on a forum to get a bit of moral support and TLC

Decide what works best for you.

In Part 2 I will explore some strategies for dealing with unhelpful Health Professionals if you decide that you do want to respond. You can read Part 2 here

Comment
Are these issues that are affecting you? Do leave a comment on how useful you found this article. I am interested in your thoughts.

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  SIMON PIMENTA is a hypnotherapist, coach and trainer working with people to boost resilience and performance, and minimise stress. After working in a demanding job as the Director of a Housing Trust, he went off sick and remained unable to work for the next 8 years. He discovered a pioneering approach to resolving health issues and quickly got back his health, and now trains others using these same techniques, to help them become happier, healthier and achieve their goals.

If you decide to book a session with Simon, after a free consultation, the first session comes with a 100% money back guarantee: you only pay if you get value from the session. (T&Cs apply).