How the Medical System Fails People with Chronic Illness

Trigger Warning: Suicide awareness

 

I have many doctors appointments and medical tests on a regular basis, but I still manage to not get effective care from many of my healthcare providers. My chronic cough remains undiagnosed and not effectively treated. My allergy attacks are getting more frequent and leaving me breathless and drugged on allergy meds and asthma meds. I have multiple joint issues that are left untreated and am told they will get worse, but there is no solution for stopping the degeneration. Doctors tend to eventually turn me out their doors with no available solution.

Why?

Because I am “not bad enough yet” and there is very little focus on preventative medicine. When you are “bad enough,” they treat you with the next step of care, but until then you are not given effective care.

When you get diagnosed with a chronic illness or you suffer from chronic pain, you are constantly asked about your mental health. How are you coping? Are you able to get out of bed on a regular basis? Does it interrupt your daily life? etc. etc.

Every new doctor I see asks me these exact questions. If you aren’t coping, they go to the next step in their method of care and that step usually includes a drug program or risky injections or steroids to help get you out of bed and cope. If you are “coping,” you are considered “not bad enough yet” and continually told to self-manage your symptoms and try physio-guided exercise, diet changes, supplements, etc. All of these alternatives help in a small degree, but they fall short.

But how do you actually measure “not bad enough yet” for someone with chronic illness or pain, especially when they have lived with it their entire life like me?

I also have the experience of having cognitive behaviour therapy (CBT) tools to help me cope with pain on a daily basis and “push through” my bad days so I can do things like have a shower, make food, go to the bathroom.

Doctors for the most part lack the ability to understand chronic illness and pain. The pain scale is different for us. The ability to cope is different for us, especially if there is a background of CBT or other coping mechanisms. They often don’t understand that the fact that I am seeking help from and seeing every specialist means I am bad enough. I’ve lived with chronic illness long enough to cope with bad days and live with high pain even on “good days.” And if I try to help them understand, they often say something along the lines of “I don’t want to start you on narcotics yet” and they don’t offer an alternative.

I don’t have a perfect solution. I’m not an expert. I will say that not being accused of being a drug seeker would be a great start and listening to what is happening to the patient as well as understanding that I may be “coping” but I am not doing well. The more bad days I have, the less and less I will be able to cope. My “good days” are days most would consider terrible.

I’ve overcome depression and suicide attempts to really value my life and value my abilities. To let pain stop that enjoyment for me is too late in my opinion and if that is “bad enough” for the medical professionals, I shudder to think what other patients are falling through the cracks – patients without my coping mechanisms – because the medical system is failing.

There is no mystery that the rate of suicide in the chronic illness community is higher. I have lost a family member with chronic illness to suicide.

I am not at risk myself. I have a fantastic family and friend network that is there for me plus the coping mechanisms to help me through the dark days, but I am at risk of losing my ability to cope. I am losing my ability to work and earn income. I am losing my ability to do basic tasks. I am losing and doctors are not helping.

We need an overhaul of how chronic illness is assessed and diagnosed. We need a new scale of understanding how a patient is coping. We also need a better system in place that considers a comprehensive view of patient care and has all of our health care providers talking to one another. With that conversation, maybe a real healthcare plan could be drawn up and the patient could feel hope. We need more patient advocates in health care policy and administration. We need to not wait until a patient is “bad enough” and make sure they don’t get there.

I see the start of this change, but it can’t come quick enough. We’ve already lost so many chronic illness warriors. Let there be not one more.

 

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44 thoughts on “How the Medical System Fails People with Chronic Illness

  1. I didn’t realize that you still had the cough. We really need an overhaul of our medical system here and it sounds like some people like you are being overlooked. You are a super woman to deal with this and still keep on doing all of the awesome things you do. I hope you can find that doctor that sees what’s going on and you finally can get the help you need. ❤️

  2. Hi Andie,
    I’m a new reader, also living in Ontario (hello from Thunder Bay!). I wanted to say “I’m so sorry” and “yes yes yes THIS”. I have a daughter with complicated medical stuff and have always felt like “they” just weren’t listening. Sadly, it’s gotten worse since I moved to Ontario 😡. I often wonder how I can help change this system, instead of the complaining I usually do (NOT at all directed at you – my feelings only).
    I’m glad you have support and coping mechanisms in place.
    Sending 🌻
    🙂 Erin

    • I’m so sorry that your daughter goes through this. It is terrible that is has gotten worse since moving to Ontario. I hope that she gets the care she needs. She has a wonderful advocate for a mom. ❤ ❤ Hugs.

  3. “They often don’t understand that the fact that I am seeking help from and seeing every specialist means I am bad enough. ” I get this with my son a lot… he was just in the hospital this week with a chronic wound infection. They admitted him for IV antibiotics and kept him overnight. The next day, his surgeon said “this isn’t bad enough to be in the hospital for…” Really? The ER admitting doctor felt like it was. They considered it ‘bad enough’.

    When he was a kid I always felt like the doctors dreaded seeing me come in because I was “that mom” but I knew my son and his conditions and by the time I brought him in, we needed intervention. Not just a “let’s wait and see” pat on the back and kick out the door.

    Hope you continue to hone your assertive self-advocate skills.

  4. You have written so eloquently …Maybe you should send this to whichever medic you are scheduled to meet? It might be a wake up call to an empathic doctor. I hope so, for you

  5. Andie, I am so very sorry that you had to write this, because I wish things were better. However I have to say well done, you expressed so very clearly the difficulties of living with chronic illness.
    For all the UK has a National Health Service I experience what you wrote. My home is actually adding to my ill health, mouldy walls, difficulty getting in and out because nowhere inside for my wheelchair. Kitchen too small for a chair but I can’t stand ect. Because I do cope I buy ready meals and microwave them when I do eat and I fight 2 days a week to go to Adult Ed which I fund I’m “not that bad” I don’t see anyone at all Tues, Thur -Sunday but that’s ok because I have a phone and internet! So thank you for airing this subject.
    Sorry you still have your cough, thinking of you often. Lucy

  6. Yes, yes, yes to all of this. It seems like there are two different systems: one for otherwise healthy individuals experiencing the odd health issue, and one for chronically ill people who are expected to just suck it up and “live with it”, whatever that means. I think the fact that so many undiagnosed / autoimmune / mystery illnesses favour women as targets plays no small part in this.

    I’m really sorry you’re going through this right now. I hope that you find some answers or at least a modicum of respect from heath professionals who should acknowledge that if anything is causing a loss of quality of life, it requires immediate attention. Xxx

    (PS I am so, so sorry to be the person giving unsolicited medical advice, but have you looked into mast cell disease (MCAS or mastocytosis)? They fall in the EDS/ME/POTS spectrum and can cause a wide range of allergy reactions that can be very debilitating. It’s a fairly new line of research – MCAS was only discovered in the past decade – but it it is very real. Hugs)

    • I completely agree about the two systems. And I definitely think there is a misogynistic aspect to all of this.

      MCAS is suspected, but I don’t seem to be getting a rash. Just the breathing issues plus sinuses and vomiting (yuck). I still think it is that in spite of not having the one reaction. There is no correlation for the allergic reactions otherwise. My environment hasn’t changed and the food I eat is so limited. The times I’ve had reactions I am never eating the same thing before. I’m not sure my allergist is an expert in this, but if not I have the name of another one that can help.

      So many hugs! ❤

      • As I understand it, MCAS reactions vary from individual to individual, so you don’t necessarily have to have a rash if other symptoms present. It’s more like a checklist, tick so many symptoms from the list rather than requiring very specific symptoms to present themselves. I have some medical literature on it if you are interested.

        And whatever it is, I hope your quality of life improves soon ❤

  7. Thank you. I just wanted to say that first because you put yourself out there and second because you said some very important things. Things I’ve found true on my journey through the medical system also.
    I’ve been pondering this dilemma myself lately. How to accurately convey how bad your quality of life is and your need for treatment without alienating or showing emotion when working with your healthcare team. I wish I could say I’ve come up with something better to share, but I haven’t.
    There is a big gap in understanding chronic illness in the medical community. The judgement of ‘bad enough” is something the medical community really needs to be educated about in much greater depth. Not “Bad Enough” is a pretty poor excuse to withhold treatment. I think quality of life should be a paramount concern, even if “Bad enough” is on the doorstep. Risky unproven off-label drug treatments with more side effects than possible help are also a very poor idea.
    I wish there was something I could offer you other than you aren’t alone. I’m sending you a virtual hug, just the warm feel of another person who cares, no squeeze because that would probably hurt us both.

    • Thank you so much, Sienna. I agree that is a poor excuse for withholding treatment. I wish they would offer something in between where I am and someone who is “bad enough.” There has to be a step between managing pain with advil and have steroid injections into your joints or taking opioids for pain. That’s a huge leap in pain management and likely contributing to the opioid crisis here in Canada and the bigger one in the US.
      I’m so sorry you are experiencing similar things. I hope it changes soon and we both get the care we need. ❤ ❤ Many hugs.

      • Not to offer unsolicited ideas, but have you tried TENS or topical pain relief? Not prefect but in conjunction with the Advil and rest I’ve found some relief. Neither was presented to me; I came to them myself. Just wanted to share something more out of the box with less bad effects.
        Pain management in the medical community is an oxymoron it just isn’t happening or being looked at in a whole person way much of the time. My favorite answer from a pain clinic that I was turned away from was that they couldn’t treat me it was outside their mandate. I was too complex a case with pain of to may types in too may different systems and locations. I just had to laugh. Many medications are just has dangerous, habit forming and side effect encouraging has opioids. I feel that the discussion of any medicine needs to come from a more balanced place on this subject.
        I wish you moments of creativity and relief found wherever it comes. Aren’t we lucky to be creative and able to distract ourselves? Thank you for the dialogue and hugs. More hugs to you.<3

      • It’s at the top of my list to get a TENS unit for home. I use it at physio and chiro and it helps a lot. Maybe I will ask for one for Christmas. hahaha.

  8. Big hugs! Everything you said, I’ve experienced. I kept searching for doctors untiI I found some who did not want to take the easy way out and prescribe anti-depression drugs.
    I pay out of my own pocket for my health care as these alternative doctors are not covered by my insurance plan. These docs have researched and finally found a name for my auto-immune. I totally understand the daily (hourly) coping mechanisms I put in place to be functional. Keep your big girl panties on. Make sure you do something to feed your creative soul as this a big key in the battle.

    • Thanks so much, Kathy. I am glad that they diagnosed you. I hope you are now getting the care you need. ❤ I'm for sure going to keep fighting for the care I need and keep trying to help my healthcare providers understand my illness.
      Sewing definitely keeps me sane and when I don't have spoons for that, I make cards and do smaller crafts. 🙂
      Hugs! ❤

  9. I’m sorry you’re having to navigate this. I wish it was even a little bit of a surprise to me but it’s too familiar. I have a very good GP but even so she’s often at a bit of a loss, and I have pretty mild issues. Or maybe that’s the problem? I’m working hard on not minimising my symptoms when I report them to her but I feel like there’s no middle ground between ‘I’m fine’ and ‘psychosomatic whinger’. It’s hard. It doesn’t help that Western Medicine segregates specialties. My Gp is good but she can’t know anything and what do you do when even an allergist and a dermatologist are arguing about what immune responses you are having? Let alone more diverse fields.

    I hope you get some answers soon, or at the very least someone listening to you better. ❤

    • Thank you so much. I’m so glad you have a good GP. I have a post in mind about how people interpret discussions about health and wellness: internally, with health professionals, and with friends/family or the public. I have also felt the way you did and, because of it, didn’t fight previous GPs decisions on the matter. I hear you on the different stances of specialists. I hear a different solution every time I meet a new one. 😦 I hope they figure it out for you and can help fix it. ❤ Many hugs.

  10. Thank you for using your platform to be an advocate for chronic illness. Your voice is important.

    Not that this is an acceptable substitute for getting adequate medical care from medical professionals. It’s not. But yes, I’ve seen this first hand, and it’s frustrating and depressing and demoralizing. It’s awful to feel like if you just stopped coping and had a nervous breakdown, someone might finally take you seriously–except that they would also patronize you and decide you’re a hysterical, overly sensitive woman and you’d get a new round of dismissive bullshit. Ugh.

    I’m thinking of you, and if there is ever anything you want to ask your readers to do on this issue, I’m sure I’m not the only one who would be happy to.

    • Thanks, Andrea. It helps me work out how to talk about these issues with doctors, but is also so cathartic to talk about it and raise awareness. I guess if readers could do anything, it would be to share the post. I’m thinking of submitting it to the Mighty. Oddly, I’m not sure I’m prepared for a response as wide as that…

  11. Andie, this really resonated with me, as a person living with RA for 17 years now. I feel like doctors can be pretty dismissive of “invisible” pain. I had a knee pain that I was sure waa unrelated to RA swelling, that it was more of a mechanical problem, and I saw several male doctors who dismissed it. When I saw my female gyn, she took me seriously and referred me to her orthopedic surgeon, who also took me seriously. I think race also played a role in that…studies have shown that in the US, black women’s pain is not taken seriously by doctors. Anyway, having a strong network and people who understand that sometimes, you can’t give 100% because you’re feeling 70% is so important. Thank you for writing about this.

    • Thank you, Angelle. I’m so sorry to hear that you have experienced racism in regards to your own health. It makes me angry that this happens and studies back that systemic racism up. I really hope it changes and you get the care you need. In the meantime, I hope you have good doctors who don’t dismiss your pain. You deserve to be heard and acknowledged. ❤ Many hugs.

  12. I sometimes think one of the problems with the medical system is that people are encouraged to become doctors straight out of school and don’t have much experience with the public until they are indoctrinated into the whole “not bad enough” mindset.

    They don’t seem to have the experience external to the medical system to deal with patients and they learn from senior doctors whose experience is limited to the patients they’ve treated etc, so it becomes this multigenerational thing where doctors have this strange idea of what is “bad enough.”

    I’m not sure if this makes sense, and I’m basing my ideas a lot on the people I’ve dealt with.

    I work in an industry where a lot of people hide or self mange work related pain, and run into the similar attitudes there if they do report it as a lot of the people who manage the work related injury team have only worked in the one place. The people with a better understanding are the ones that worked elsewhere first. Life experience does count for something, I think.

    This is not the only problem but taught/learnt attitudes about chronic disease and pain management don’t help.

    Hope you manage to find the health care to help manage everything and that your respiratory and allergy problems get treated properly.

    • I think world experience does help doctors be more patient centered. I think there is a huge issue with how people perceive chronic pain. There’s a doctor recently who is speaking out and saying patients should have pain acceptance instead of seeking opioid medications. I’m all for CBT and pain acceptance, but the doctor doesn’t get that most of us have tried that and we need something else.

      Thanks so much for your comment. Sorry it took me so long to reply. ❤

  13. Great Post Andie! The whole systems is nuts to be sure. My favorite is when the doctors play the did the chicken come before the egg game. For example, I have bladder incontinence…I also have MS, so of course it’s MS until an MRI showed that my spinal cord is pinched…so now the ms doc blames that the neurosurgeon says…no its ms…both say “here let us give you drugs” which cause SO MANY SIDE EFFECTS its like having a new disease to add to my list….shaking my head

    • Thanks so much for your comment. Sorry for the delay in replying. I can’t believe they didn’t investigate it further. 😦 Sometimes things aren’t related to the chronic illness, but doctors are just “must be an ____ thing” and it just leads to years of pain. I hope medical care improves in the future. Many hugs to you!

  14. Thank you for the post. I feel your pain. It’s no better in the USA where corporate America pretends they care and make you do a wellness check once a year. I have asthma and have trouble breathing. I had thyroid surgery. I should be on thyroid meds, but the doc won’t prescribe because I am NOT a person, I AM only a number on a piece of paper. On paper, I am a perfect number, but in reality, I feel like crap due to not having a thyroid. But will they treat that? No. They would rather make the pharma companies rich by prescribing everything anti- they can think of! Why not prescribe 5 drugs when one would work? How do you feel about that? Well, let me prescribe something for you that doesn’t address the real problem.
    Anyway, you and your situation are in my prayers. I am now researching the advantages of hyperbaric oxygen. Check it out.

    • I’m lucky to be in Canada but we still have arbitrary decisions made about our health like that. Doesn’t matter what makes sense if it doesn’t work with whatever plan they have to conform to. I hope they give you the meds you need. I’ll check out hyperbaric oxygen. Thanks for the tip!

  15. I can relate to much of what you have to say. In my experiences, however, even when I have been deathly ill, doctors still remain unmotivated to search for root causes, nor take me seriously.

I love comments, but sometimes I may be slow to respond/approve. I will respond though. :)

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