Let’s Begin Getting Organised
While I can’t organise what my body decides to do in terms of my health, I can be organised with managing the consequences, from prescription management, doctors appointments, regular testing reminders etc.
The key though I think, to staying on top of a complex illness, is building a really good working relationship with your medical team.
The Good GP – Your Advocate
One of the most integral relationships is with your GP. Sticking to one GP if at all possible just makes life so much easier when health is complicated.
My GP has travelled this idiopathic, chronic and complex path with me for over 10 years. We discuss my health, we throw around ideas and together, at times, we have uncovered more than even my Specialists were able to.
It is a partnership, one where I can ask him questions, discuss my own theories and know that he is listening. He respects this is my body and my battle and he is there to help me with it.
The Specialists – They Are Your Team/ You’re Colleagues
The other key is making sure the numerous Specialists working on your case, are working together.
That’s not an easy task as they often have strong egos and like to think they are number one in your world. It is so important though to point out to your Specialists the names of other Medical professionals you would like them to correspond with. This includes Allied Health professionals like Physiotherapists, Dietitians, Occupational Therapists etc.
This makes all your appointments so much easier as, if information is shared, your Medical team can begin to join the dots. Not only can this ensure a quicker diagnosis, it can also prevent misdiagnosis.
You’re The Business Owner
Think of it as you being the Business Owner and your Doctors are your Stakeholders. In essence you are their Client, their Customer. Without your business they won’t have a business.
That puts a whole different spin on how to approach the Doctor/Patient relationship doesn’t it.
I have been blessed with a great team of Specialists who I now share a friend/colleague connection with, rather than the traditional formal Doctor/Patient relationship. It has taken time and a lot of work on my part to develop though.
I’ve spoken to many people with complex illnesses who haven’t liked the way their Specialist has spoken to them on one visit, so they’ve tried to find another and then another, in the effort to find answers and affirmation.
We need to remember that our Doctors get tired, have bad days and put in enormous hours. They may have seen a patient before us who was difficult, perhaps incredibly ill and all of these factors affect our Doctors. They are human after all.
I don’t expect them to have all the answers and the cures. I expect them to work with me. I expect them to allow me to ask questions and to raise my concerns. I expect them to explain clearly a treatment plan.
That may include having no treatment plan but having an explanation as to why, is just as important as walking away with a prescription or a surgery date.
A Business Approach
My working background is in Executive Management. If I was meeting with a colleague or a business stakeholder to discuss my business and gain support for a business initiative, I would go into that meeting prepared. I approach my Medical appointments in the same way.
My Business approach in each scenario would include:
- High Level Business Summary (Health Overview)
- Quick Fact List of Business Needs/Concept (Current Symptoms)
- Detailed examples of why change is required (How Symptoms impact my daily life)
- AGREED Action Plan (Treatment Plan)
There are also things I wouldn’t do in a Business Meeting that I also wouldn’t do in a meeting with my Doctors.
- I wouldn’t be late
- I wouldn’t cry
- I wouldn’t assume I know everything
- I wouldn’t be afraid to question thoughts and concepts (Note: Using open questions like, “How would you manage this disease if you were in my situation”, or “What are the next steps in my treatment or ongoing care?” Open questions generate conversation)
- I wouldn’t have unrealistic expectations
- I wouldn’t attend the meeting unprepared.
Relationships Take Time – Even With Doctors
My medical team knows I will only call them if I really can’t manage my symptoms. They have all been very clear about the “danger zone” for me when I need to get myself to emergency or call them asap, as happened a while ago with my inflamed bowel.
My Colorectal Surgeon hadn’t heard from me for 2 years but as soon as I rang his reception, his receptionist remembered me. She was so lovely and genuinely excited about catching up with me again ( I had seen her every few weeks for a number of years, while undergoing various bowel surgeries, so we had built a good rapport over that time).
The result of that relationship meant that she called my Colorectal Surgeon while he was in Surgery and explained my symptoms to him. I expected an appointment to be made, instead I received a phone call 30 mins later from his receptionist, saying I was to be admitted to hospital straight away.
When my Colorectal Surgeon visited me later that day he said;
“I know you too well to know that when you call it is something really important and I have told my team whenever Sam calls, they are to swing into action and look after you”
Now this Surgeon has put many people off with his abrupt manner and direct attitude but he is a brilliant Doctor and I have worked hard at building a relationship with him and trying to understand his modus operandi. Hard work that has been worth it as it’s been rewarded by reciprocated loyalty, respect and trust.
The Professional Patient
I’m seeing a new Specialist soon. It is always a little daunting starting off with someone new. My story is long and it’s important to succinctly give all the facts.
The new Specialist needs a clear picture of my overall health, to help assess how my other diseases may be affecting the condition they will be investigating.
I’ll attend my appointment armed with my “business plan”….my medication list, surgical list, current diagnosis, current symptoms and the names of my existing Specialists.
As hard as seeing a new Specialist is for me, I can’t help but feel sorry for the Doctor. Complex patients are never easy. We often present as a medical conundrum. For that reason alone it’s so important that we take a “professional” approach to each medical appointment.
Let’s face it, once we have a chronic illness, we inevitably become “Professional” Patients. Taking a business approach with our medical team puts us, to some degree, in the driver’s seat. It allows us a little control in a situation that so often seems out of control.
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women