The “Chronic Illness” Law of Diminishing Returns

My title might suggest a study in economics but rest assured it is not where I am heading with this.

The Law of Diminishing Returns 

Refers to a point at which the level of  benefits gained is less than the amount of money or energy invested.

When you live with chronic illness, over time your expectations, of yourself and your medical team in particular, begin to diminish.

In my case it’s not because I don’t trust my medical team or because they have disappointed me. It couldn’t be further from the truth. They have all been amazing in their care, support and passionate desire to try to find treatment options for me.

Expectations and tangible outcomes can begin to diminish the longer you live with a particular disease. Especially when all known treatment options have been exhausted.

I know my disease is progressive, rare and my disability is steadily increasing before my eyes. There is no escaping this reality. I wake up to it everyday.

Ever the optimist, I do however wake each morning hoping that I might get a slight pain reprieve or be able to achieve a few things on my “to do list”. It’s called hope and on some days my hope is realised. On other days….well let’s just say I choose to forget those days!

The Diminishing Return of Doctor’s Appointments

It’s been a while since I have had hope of good news or expected any great outcomes from my medical appointments. Usually they are routine, follow-up type appointments. Just checking blood tests, looking at latest scans, occasionally booking surgical procedures and all agreeing;

“yes, the legs still broken, your spine is a mess, your disability is increasing and the disease is progressing. Sorry still no treatment or cure”.

It’s not quite as matter of fact, but it’s a pretty close depiction of how things go.  I thankfully have a great relationship with my Specialists and GP, so we also throw around ideas and have a good chat. In general I look forward to my appointments as these people have become my support crew and my friends.

When I first started out on my rare bone disease journey, every appointment had a huge return. There was research opportunities where I was a willing guinea pig for science. My attitude was sign me up for anything if it might help others and possibly provide me answers. Unfortunately these research opportunities didn’t even provide a diminishing return. Instead they came up with negative or irrelevant results time and time again.

My Orthopaedic Surgeon was full of hope in the early days. His enthusiasm was contagious, as he outlined his strategic surgical plans to give my broken femurs every chance of healing.

Each appointment in the early days was following up my recovery post surgery and planning the next surgical adventure. They were full of action.

There was also the bedside “in-patient” catchup with my Specialists, as I seemed to be in hospital more than at home for three years running.

In the early days of my diagnosis, my Endocrinologist was searching for answers and organising bone marrow biopsies and a myriad of other tests/scans, hoping to uncover a cause and treatment plan.

As one year turned into two and into three and into four, more and more open doors began to slam shut. The hope for treatment, a cure or even some answers as to why this was happening, all began to diminish, appointment after appointment.

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Is Anyone To Blame?

It’s a natural response to want to find reasons for why things go wrong in life.

Who’s to blame?

We ask ourselves so many questions when chronically ill. Did I do something wrong? Is my medical team keeping something from me? Has someone made a mistake? Is there still an answer out there and should I keep searching?

All valid questions but they are also questions that can send us on a wild goose chase. A chase that ultimately will do nothing but leave us absolutely exhausted. Especially if we have done everything possible to find answers, seek second opinions, or maybe even third or fourth…..there comes a time when we have to stop.

The Chronic Illness “Law of Diminishing Returns”, at some point, begs to be acknowledged and accepted.

So Many Questions, So Few Answers!

Why bother with future appointments? Why not give up?

Why?

I think we owe it to ourselves to reassess our medical needs once diagnosed, especially when all treatment has been exhausted or is in maintenance mode.

We owe it to ourselves to still have a team of medical professionals available to support us and to monitor our health.

Things can change over time. New symptoms can arise or old symptoms can worsen and require attention. We may need documentation filled out for disability support etc. We need a medical team on our side who are keeping abreast of our case.

Future appointments are important but they can be approached differently as we take into account the “law of diminishing returns”. We don’t want to waste our money, or our energy, on multiple appointments we know wouldn’t achieve any outcome.

It’s definitely worth talking to your Specialists about managing your time and energy in regards to your medical commitments.

I have five main Specialists who I need to juggle at the moment. A Spinal Surgeon, Endocrinologist, Clinical Immunologist, Opthamologist and Geneticist . There are others who I see every 12 to 18 months, including an Gastroenterologist, Dermatologist and Pain Management Specialist.

I see my Endocrinologist every 6 months as she manages my bone disease and is still constantly looking for answers. She coordinates everyone else too. She is amazing via email and I can contact her anytime. Usually we chat online every month.

I always have phone consultations with my Clinical Immunologist. His building is too difficult for me to navigate. He manages my medication, especially Prednisone dosing, so I check in every 6 months. He leaves the timing up to me.

My Gastroenterologist is relatively new to my team due to my more recent Gastroparesis diagnosis. I was seeing him every 6 months. With treatment in place these appointments have also come under “the chronic illness law of diminishing returns”

My Orthopaedic Spinal Surgeon used to see me every 3 months, then every 6 months. Now he’s permanently on call as my disease progresses through my spine. I need his expertise more than ever.

Don’t Be Disheartened

If you are feeling like you should be getting more from your appointments and come away feeling frustrated, think about them in light of “the law of diminishing returns”.

Are you expecting more than is possible? Do you have all the answers you are going to get? Is it time to accept that you have a chronic illness?

Remember there is a big difference between an acute illness and a chronic illness.

A chronic illness generally doesn’t go away and there is only so much our GPs and Specialists can do about that.

Much of the solutions lie with us. Accepting our circumstances, making the relevant life changes to manage our symptoms and disabilities…….these are some of the key elements to our ongoing treatment plan and wellbeing.

So if your chronic illness journey is at the point where you are putting so much effort and energy into running around searching for answers, with a diminishing return from each appointment…..give yourself a break.

It may be you’ve done all you can do for now. It’s not your fault. It’s not your Doctor’s fault.

It’s time for some self-care. It’s time to stop running around. It’s time to accept “it is what it is”.

Sam xx

“The sufferings of this present time are not worth comparing with the glory that is to be revealed to us.”
—Romans 8:18

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 a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

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3 thoughts on “The “Chronic Illness” Law of Diminishing Returns

  1. My mom once said that still going to doctors despite lack of hope, was her way of giving the middle finger to chronic illness. Like, hey look I am still here and no matter how hard you try, I am still coming back. So take that.

    I drew the responsibility to call her doctors and cancel her appointments when she passed. She had a standing appointment with a dermatologist for a facial. every six months she had 4 on her calendar. I thought you know that is something she enjoyed. Something she was holding up her middle finger to chronic illness about. She was blind, could not walk, on dialysis, and she paid out of pocket for these facial.

    Yeah get the finger ready.

    Like

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