Growing up I was often referred to as “Pollyanna” as I naturally played the glad game, always looking for the positive in a situation. I can’t tell you how grateful I am that I was born with that personality trait given the health issues that have been thrown at me.
As a child and into adulthood I was also referred to as “Instant Sam”…still am actually. I like to get on with things, be ahead of schedule and have anything that can be possibly organised, organised with military precision. That trait has certainly helped me in my business life and my personal life in many areas.
While I can’t organise what my body decides to do in terms of my health, I can be organised with managing the consequences of that 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.
One of the most integral relationships is with my 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 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 and respecting that this is my body and my battle and he is there to help me with it.
The other key is making sure that if you have a number of Specialists working on your case, that they also 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 Specialists that you would like them to correspond with. It just makes all your appointments so much easier as the Drs can begin to join the dots if they have the right information from each other.
Think of it as you being the Team Leader & your Doctors are all your team members.
I have been blessed with a great team of Specialists who are now more friends than my Doctors but that has taken time and a lot of work on my part. 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. We need to remember that our Drs get tired, have bad days, put in enormous hours and may have seen a patient before us who was difficult, perhaps incredibly ill and all of these factors affect our Drs. They are human after all. I also don’t expect them to have all the answers and the cures.
My medical team know 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 15 months 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 2 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 30mins 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 Dr 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 has been rewarded by reciprocated loyalty, respect and trust.
I recently visited a new Specialist, an Oral and Maxillofacial Surgeon. It is always a little daunting starting off with someone new. My story is long but I need to find a way to succinctly give all the facts, so that the new Specialist can get a clear picture of my overall health and think about how that may be affecting the condition they will be assessing. So I go to new Specialists armed with my medication lists, surgical list and current diagnosis, current symptoms and existing Specialists list.
As hard as seeing a new Specialist is for me, I can’t help but feel sorry for the Dr, that the “special girl” is being added to their patient list. I also silently pray that they may be equal to the task of dealing with rare, chronic & complex. Time will tell 🙂
I’m also a Contributor at “The Mighty” https://themighty.com/author/samantha-moss/
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.