I’m through feeling guilty for my health problems

2012-12-18 Roses

Have you ever felt like you needed to apologize for a health problem you were facing?  I have experienced this often over my many years in the healthcare system.

I continue  to have serious health issues creep up every few months. Most of them are bigger than what my family physician can deal with, so we need to call on  “the specialist.”

When these issues arise I find it frustrating enough. But sometimes the reaction from physicians and specialists only makes matters worse.

Most of the time I get “that’s not my department,” leaving me to wonder who will deal with it. I advocate for myself regularly and because of my repeated serious medical issues regarding my MG and MS diagnosis, I do know more than the average person about my conditions. Not all patients though take as active a role in their care as I do.

I am not sure whether specialists realize that when they can’t solve a problem, dumping it back into a patient’s lap is not the solution.  I get it. I understand that when a patient has a recurring problem, this can be hard on the doctor. But surely working with me to figure out who can help solve the problem IS part of your job. When I get pushed back to my GP, he is often left scratching his head as well.

When I have a new health problem, it’s often my loyal nurses where I have treatment who make the first call to a specialist. This is when it becomes tricky.  I usually can hear the back and forth telephone conversation and can tell thing are becoming heated.  I know what is happening: the dreaded “its not my department” is surfacing. And if I wasn’t already stressed by my latest health problem, I am now even more stressed by what I’m hearing and the thought of what is to come.  I try to calm down, but I can  feel the tears welling up, not because I have yet another health problem, but because this new problem is making my nurses and doctors so upset.

I am a people pleaser, especially when I have to deal with my doctors so frequently and owe my life to them.  When I have a health problem, I worry because I don’t want them to be mad at me.  I even joked to a friend that I should bring chocolates to my next appointment, to smooth things over.

Then I got to thinking: Why should I bring chocolates? More to the point, why should I be wasting my precious time worrying about upsetting my doctors?  I suspect they don’t go home at night and spend hours worrying about my health problems. I’ve decided it’s time to stop feeling guilty, and start speaking up when I’m being made to feel that I’ve done something wrong.

Why is it that I feel like I am a partner with my GP, but not with my specialists? I want to be part of the team with all my healthcare professionals. My specialists may be frustrated by my recurring health problem. But you want to know something? I am too. Let’s be frustrated together AND let’s work together to find a solution.

What about you? Have you ever felt you needed to apologize for a health issue?

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4 Responses to “I’m through feeling guilty for my health problems”

  1. Mary Smillie
    December 19, 2012 at 3:54 pm #

    Healther and Anonymous: Thanks for sharing your experience and your frustrations in these examples of how specialists and their expertise failed to support you to restored health or wellbeing. I recognize it takes a lot of courage to speak up especially when one’s health is on the line. Your stories remind me of what we learned from South Central Foundation in Alaska – they have redesigned their health care system around enduring relationships over time between providers and patents/families in contrast to care based on individual visits with a health professional. They redesigned the role of the specialist in this model where the specialist provides support and advice to the primary care team. In this model the patient rarely needs to see the specialist in a isolated appointment. The whole team including the patient/family gain wisdom and insight from the interaction with the specialist. It sounds like both of you have a supportive primary care team, now if we could just find the magic wand to redesign access to specialists imagine how better health, experience, value and teams could flourish!

    • Heather Thiessen
      Heather Thiessen
      December 19, 2012 at 4:25 pm #

      Thank you Mary!!

      I just quickly did a google search and am really intrigued with what the South Central Foundation in Alaska is doing. Bravo to them for doing what they are doing. How wonderful would it be to the primary care team working together with the patient. I need to read more for I have questions.

      I think we in Saskatchewan are trying and like I said before it is a work in progress. I have faith and know it will be better. Of course in time. Just today I am happy to report I had an extremely positive visit to a specialist who said “we will work together to solve this problem”. That helps and reinforces what I am putting my trust in.

      I do appreciate you bringing this to my attention.

  2. Anonymous
    December 18, 2012 at 10:51 am #

    I have also had the specialist experience. I recall spending over $500.00 to fly to “the city” in my province to see a nephrologist. The nurse in his clinic spent a few cursory moments taking my vital signs and asking me why I was there. I took my spot in the examining room and waited. After some time, the nephrologist approached the room. I say approached the room because he did not actually cross the threshold of the doorway. He stood in the doorway, and told me that I could “live out my days” having these symptoms and there was no point in investigating the symptoms any further. I had been referred to him for a kidney biopsy. In fact, in the event that vascular access was required, my home facility inserted a PICC line. I had been so unwell, a peripheral IV access could not be obtained. The nephrologist shrugged his shoulders and said, “There is no point in doing a kidney biopsy”. There is that phrase again…”no point”. Then he left. No good-bye, No suggestion for follow-up. No next steps. Sometimes it is difficult to be a partner in my health care. I am so grateful for those physicians and specialists who recognize the value of partnership.

    • Heather Thiessen
      Heather Thiessen
      December 18, 2012 at 11:38 am #

      Thank you for your response. I feel your frustration and wish I could wave a wand to change the way you were treated. Unfortunately I cannot and for that I am sorry. I am glad you spoke up and that I why I am speaking up. It is important to do this, for I have learned that through us, patients speaking up, maybe the start to begin change. It won’t right the wrong you have experienced or the pain you are feeling.

      I have found that being able to speak up, especially in this blog and by speaking at conferences about how I have been treated starts to really begin the conversation and let professionals in healthcare know that we will not stand for this kind of treatment. Better yet would they?

      Believe me it has taken years for me to be comfortable speaking up but I do know that the SHR is not standing for this and neither is our government. They are committed to stand by the “Patient’s First” and I am trusting they will be looking out for me, the patient.

      It may take time but I believe true change does take time. I know that does not solve the hurt you are experiencing but you have started by speaking up.

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