The “Chronic Illness” Law of Diminishing Returns

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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. That 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 that 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”. That’s called hope and on some days that hope is realised.

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 x-rays and all agreeing;

“yes, the legs still broken and the disease is progressing. Sorry still no treatment or cure”.

It’s not quite as matter of fact as that 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 that wouldn’t achieve anything.

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

I have four main Specialists who I need to juggle at the moment. An Orthopeadic Surgeon, Endocrinologist, Clinical Immunologist and Gastroenterologist. There are others who I see every 12 to 18 weeks as months.

My Orthopaedic Surgeon used to see me every 3 months, then every 6 months. It’s still every 6 months as he has to keep an eye on my non-union femur, as the pole could break.

For the next appointment we are going to have a phone consultation. He has sent me the x-ray form and I’ll get that done a week before we chat. He doesn’t want me running around unnecessarily and I so appreciate that. He also expects me to contact him if my condition worsens beyond what I can handle. I can do that by phone or email.

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.

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 3 to 6 months. He leaves that up to me.

My Gastroenterologist is new to my team due to my recent Gastroparesis diagnosis. I’m seeing him every 6 months and his appointments are in those early stages of hope and promise. They too will undoubtedly come under “the law of diminishing returns” eventually.

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?

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 that 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.

You’ve done all you can do. It’s not your fault. It’s not your Doctor’s fault.

It’s time for some self-care.

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

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

  1. Good morning Sam! This rings so true for me. I can’t have certain treatments, things are progressing, and I’m not going to get better. In some ways it allows a focus on self care that maybe was needed all along. I read posts by younger people with chronic illnesses describing themselves as warriors. Not me. Just giving my body the love it deserves for serving me well for the time it did. I thank my body for what it was able to do on any given day. Hugs to you. I cherish your wonderful words. Sincerely, Marla

    Liked by 2 people

    1. Oh Marla, you have said that so beautifully. I agree with you completely. I don’t feel like a warrior either. Like you I am so incredibly grateful that my body held out for as long as it did and I was able to push it for as long as I did.
      Thank you so much for your beautiful support of my blog. Lots of love xx

      Liked by 1 person

  2. You make such a great point about realizing that there are things your appointments and your doctors can’t do sometimes and that accepting that fact can free you to just invest in your self-care without the pressure to “get better.” It’s wonderful that you have such a supportive medical team caring for you. Blessings to you!

    Liked by 2 people

    1. Thanks so much Terri. I have definitely been blessed with my medical team, although first impressions were not always the best! It’s a partnership at the end of the day and like all relationships they take time to evolve. Thankfully in my case, they evolved well.
      Thanks so much for reading and for your encouragement. It means a lot xx

      Liked by 1 person

  3. I needed to read this today! Medical appointments are more and more frustrating for me, and also the well-meaning people who ask me if I’ve tried something like essential oils for my constant chronic headache! It’s like the common advice to “just choose to be happy” with my clinical depression. I’m sorry for your increasing challenges and my thoughts are with you, Sam! Thanks for being a guiding light!

    Liked by 2 people

    1. Oh, so familiar with that advise! They are well meaning, I know, but sometimes you just want to scream! But ” The Lord works all things together for good…”

      Someday we will see how every kind thought, response, and action has been wrought into good by our afflictions, as iron is wrought into something beautiful after placing it into the fire.

      Thank you for encouraging Sam, and thank you Sam, for encouraging us!

      Liked by 1 person

    2. Cindy Kolbe, Oh, so familiar with that advise! They are well meaning, I know, but sometimes you just want to scream! But ” The Lord works all things together for good…”

      Someday we will see how every kind thought, response, and action has been wrought into good by our afflictions, as iron is wrought into something beautiful after placing it into the fire.

      Thank you for encouraging Sam, and thank you Sam, for encouraging us!

      Liked by 2 people

  4. Thanks so much Cindy. I can so imagine how you must be over medical appointments and unwelcome advice with all you’ve been through. You are an absolute inspiration and a beautiful encourager. Thank you so much for the work you do, in raising awareness and the challenges of living with disability and chronic illness. xx

    Liked by 1 person

  5. This is such a fine post. Encouraging and real. Truths one can grasp when dealing with any kind of chronic illness. I am glad I had you as a neighbor at one of today’s linkups. I live with Fibromyalgia as well as the pains from 3 spinal surgeries, 2 joint replacements. My body has been through a lot but I am not discouraged. The Lord keeps me close and is with me always. I can lean on Him. Thanks for encouraging me tonight.

    Liked by 1 person

    1. Oh wow, how perfect that we were neighbour’s in the link up. I love those moments when God’s hand is so clearly at work. Thank you so much for your encouragement. I just found out this week that I have to see a Spinal Surgeon so it was very interesting to read you’ve had spinal surgery too. God bless xx

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      1. Sam, thank you. Be gentle with yourself and do not feel rushed when seeing the spinal surgeon. Find out exactly what they want to do and how they will do it. I have had 2 fusions and after 6 and 7 years now, the areas above and below the fused portions are starting to hurt. They have been doing all the work for that portion of the spine that was fused. So now those uppers and lowers have bone spurs or weakened parts. So hopefully you won’t need such, but also, hopefully, they have better methods that 2011 and 12. That wasn’t that long ago yet advancements happen quickly sometimes. That self-care is vital for us and I appreciate your words.

        Liked by 1 person

  6. Thank you so much. I have had so many surgeries over the past 10 years that my Specialists now consider me a high risk of complications for more unless absolutely necessary. All my previous surgeries have either been emergencies or absolutely necessary.
    It looks at this stage like my rare bone disease is attacking my lumbar spine and causing instability. I’m really looking forward to getting this appointment and hearing the Spinal Specialists thoughts. I will no doubt be a bit of a conundrum for him. It certainly keeps life interesting xx

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  7. Great post, Sam! 26 years in with RA, and now severe disease, I’m at a point where I know waking up in pain and staying that way – because the pain meds only do so much – is a given. As are the stiffness, lack of energy and stamina, and low grade fluey feeling. No amount of doctor appointments will change that…at least, not until one of my drugs fail and we have to go through the process of dumping that one and starting another, with all the fears of new side effects and everything else that goes with that.
    So for me, it becomes a choice about what I DO with what energy and physical ability I have…and at this point, it has to be the things that make me happy and feeling productive… My art work and writing are at the top of that list – so this week with the blog event happening, my daily photo and blog post come first while I’m in that first flush of post morning meds energy. My kitchen is currently a disaster site because I didn’t make it to the dishes yesterday, so I foresee multiple encounters with the dishwasher today! But that can be dealt with slowly over the course of the day as I can manage it…
    The doctors can only do so much with chronic disease – that’s also a given. And the good doctors will be AS frustrated as we are when we hit dead ends. So yes, self care – SO important. I hope today is a peaceful one for you and one that brings you some joy somewhere along the line…

    Liked by 1 person

    1. Karen, thank you so much for reading and commenting. I was nodding to myself the whole way through reading your comment. We absolutely do have to make massive adjustments to create a “new norm” that we can live with and be content with once we arrive at that place of understanding, nothing more can be done.

      It’s not easy but it is possible and there are so many of us who have soldiered through and got to that place of acceptance. I can hear in your comment that you have too and I’m so glad.

      Thank you for sharing xx

      Like

  8. “You’ve done all you can do. It’s not your fault. It’s not your Doctor’s fault.” So powerful.It’s so easy to get caught up in a “surely there is more I/they can do,” when sometimes, there just isn’t. I’m really happy to hear that your doctor’s are willing to do email/phone consultation — when you’re going through a really rough time, that can be really protective of your health.

    Liked by 1 person

  9. Sam, you’ve really hit the nail on the head. In my case, it seems that we finally get a handle on one problem and then something entirely new crops up.

    My body continually betrays me and not always with just my bones and joints – first it was the Diabetes Type 2, then the Bipolar Disorder, then it was the Trigeminal Neuralgia. After that came the D.I.S.H. diagnosis on the spine, then the Hypothyroidism, and now the Haglund’s Deformity of my left foot.

    I’m scared of every new ache and pain that I feel because I have no idea if it’s something simple and relatively “normal” or the start of some major new issue. I’ve recently had a sit down with my doctor to triage ongoing issues that I still haven’t dealt with because of so many things going wrong with my body. It’s disheartening to see this growing list and wondering if it’s ever going to stop.

    I’m not ready to throw in the towel, but my diminishing returns are starting to show themselves more frequently in certain areas.

    Liked by 1 person

    1. I so understand Pamela. I’m im such a similar position with my body throwing so much at me.
      I’m triaging everything with my Specialists at the moment. It really is the best approach. I hope your plan of attack does produce a better result than a diminishing return this time round. Thinking of you xx

      Like

  10. I relate to this SO much!! An example of mine, is that I was going to the doctors with pelvic pain, and they kept throwng brith control at me. In the end I took myself off all of it. With the help from specialists I gave myself self care methods, that can make it abit more bearable. Best thing I ever did. I also definitely think I deserve more at appointments, but I think when you spend years in and out of them, you just have that hope that every time you come out you’ll feel even the slightest bit better, when most of the time you feel pushed down!

    http://www.chronicalsunflower.co.uk

    Liked by 1 person

    1. It certainly is so important that we become our own patient advocates. When you’ve lived with chronic illness for so long you do understand your own body better than anyone else. Thanks so much for commenting Amylou and sharing some of your experience. Xx

      Like

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