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Dear Medical Professionals, Love Spoonies

Dear medical professionals, love spoonies open letter to doctors #Spoonie #ChronicPain #ChronicIllness #Fibro #Fibromyalgia Fierce Fibro Femme

Dear Medical Professionals, Love Spoonies

Dear medical professional,

It's me again. The person who keeps calling, making appointments every week, complaining about everything and who never seems appreciative of the work you do. I know you're tired - with the shortage of other medical professionals, cut backs, patients constantly questioning you and extremely long hours, I can believe that it's an incredibly difficult career to have chosen.

I am truly garetful for absolutely everything you do. If it weren't for you, I'm not entirely sure if I would actually be alive today! Being in medical facilities makes me feel better, I feel surrounded by hope and opportunity that I do not have in my own day to day life. I appreciate the support you provide me and everything that you offer.

When I am disappointed, most times it's towards the system in general, not you personally. You see one day, a brief flash of what it may be like to be disabled and a small explanation of my symptoms allows you to make a decision that will affect my life. I know that you heal and you are there to do good, but a lot of the decisions made for us make us feel invalid or stuck. We are used to being tossed around, pushed aside and have our symptoms be swept under the carpet.

A phrase commonly used by your community is "Wait for the referral , we've done everything we can". We understand the system has limitations, and we get that sometimes there is not much to do other than to be patient. However, acknowledging that those months of waiting for the referral are months of us being in pain, mentally unwell, ill, bedridden or any other symptom that causes issues. You are not asking us to wait to see a medical professional, you are asking us to keep fighting for months dealing with discomfort knowing there is nothing to be done. It is disheartening when you are begging for help and nothing is available immediately.

We also know that medication is amazing and helps us, we truly do. There are some medications that may not work for us personally, but we truly want to get better. When you prescribe a new medication or change dosage, remember that you are sending someone home to usually have more severe symptoms for the next couple of weeks before it gets better. When we say medication is not working, listen to us. We know our bodies better than any medical textbook could have taught you.

How you treat us also interconnects with a lot of sense of self worth in most cases. Being rejected by society and trying to find solace in one of the only communities who might be able to understand, and then to be belittled, mocked or even gaslighted is damaging on multiple fronts. It's not just you being cautious - you actively are causing us to feel invisible and unheard. Some of us do not look like what you may have studied, some of us may look just like you.

Being in this position of power also requires an incredible vocabulary and understanding of different marginalizations. Healing is not about one acute hurt, it is about the entirety of the person. Recognize that how you speak to people is not how you should speak outside of the workplace , just like most individuals. We are not allowed to ask if someone is gay, we are not allowed to ask "What does your boyfriend think about supporting you financially?" when it's not a discussion I am there for, telling someone who is disabled that they "look pretty amazing all things considering" doesn't change that I don't feel good on the inside, and that's the only thing that matters to me.

Please, talk to me with respect. Believe and trust me when I tell you that what I am experiencing is real, even if it may be psycho-somatic. Explain to us what is going on, offer support and words of encouragement. We trust you, and we thank you for continuously fighting this illness with us.

Yesterday was my first official appointment at the pain clinic. Things were okay but mostly just referals, and once again sent home with medication that'll make mental health worse fort the next couple of weeks. However, official diagnoses of Fibromyalgia and a soft connective tissue disorder (Ehler-Danlos). Now, off to wait for all of these referrals!

28 thoughts on “Dear Medical Professionals, Love Spoonies”

    1. It’s sad yet very validating that other people have suffered through similar struggles 💕 Hope you’re doing well!

  1. I really like what you wrote. Sometimes doctors just don’t hear what I have to say as well and it is so difficult. I hope that the referrals come through quickly and that the medication changes don’t cause too many negative side effects.

    1. Thank you for your support 🦋 It’s true that sometimes it feels like we aren’t heard or taken seriously. I hope that too and I also send love and positivity your way !

      1. Amazing on you for being so supportive ! I know of parents who tell their child that their disease isn’t real or doesn’t try to comprehend what the illness is about. I hope that your daughter finds all of support out there for her 💕

    1. Amazing on you for being so supportive ! I know of parents who tell their child that their disease isn’t real or doesn’t try to comprehend what the illness is about. I hope that your daughter finds all of support out there for her 💕

      1. It seems as if education and stature allows for ego to get in the way of treating patients. I know that during my Respiratory Therapy education , I was told often patients would lie so it’s definitely a systemic problem – not to believe patients and to be told that given your education, you know better than the person themselves.
        It’s definitely not harsh to say! At the end of the day , you’re the one who has to deal with the pain and symptoms of illness and not them , so taking care of yourself is a must. I’ve definitely found the spoonie community such an amazing place for support 💕

  2. One thing I am realizing is that the Doctors don’t know BEEEEEEPPP ! And they don’t care that they are blind and ignorant.
    That said I know that we have the inner strength to live, and to be, without their help or input of ignorance in most things. I have suffered for decades alone and in the dark so to speak. It wasnt any Doctor or drug that pulled me through only the gut attitude of Living my life the best I can. This may seem harsh and stuff but we all need to realize how strong we are and rest our hearts on that, And we all need to know that even though its gross and bad, its ok because “I’m” okay and I will rest my heart in knowing that I I I am awesome!!! And you all are!

    1. It seems as if education and stature allows for ego to get in the way of treating patients. I know that during my Respiratory Therapy education , I was told often patients would lie so it’s definitely a systemic problem – not to believe patients and to be told that given your education, you know better than the person themselves.
It’s definitely not harsh to say! At the end of the day , you’re the one who has to deal with the pain and symptoms of illness and not them , so taking care of yourself is a must. I’ve definitely found the spoonie community such an amazing place for support 💕

  3. We are stuck in the cycle of referrals for my son at the moment, he came home so upset from last appointment, was told it’s because he is excitable go join a gym , he would if he didn’t get palpertaitions missed heart beats and dizziness which makes his blood pressure drop .
    There definatley needs to be more research very well written and I have seen this from a mother’s perspective

    1. Yes! That’s exactly what I felt and still feel like. I would be so thrilled to finally be able to go to an appointment after months if not years of waiting to be told that I’m not their problem and to be referred elsewhere. I’m not a holistic type of person but since you’re stuck in the western medical system , have you thought of going to a naturopath ? They may be able to at least give you a bit of a better idea as to how to mitigate symptoms. I really hope you and your son find answers soon 💜

  4. I’ve been told that it’s the ME and other underlying issues that is causing my hip to heal so slowly. My medical team know that I’m in pain and they’re doing all they can (even deciding that the pain meds are worth the risk to my already damaged liver, as the liver can regenerate). If they could remove the cannulated screws for me tomorrow, they would do so.

    I could never be a doctor or a surgeon; I can’t imagine having to force a patient to live with pain, knowing that there’s nothing I can do to remove the cause of the pain until the source of the original pain has mended. I’m a former care assistant and have seen things that nobody should see – and all I could do was offer kindness and wish the dying a peaceful end. You feel so helpless when it’s all out of your hands.

    But, whatever those of us with this debilitating condition have to go through, we remain strong because we’re fabulous!

    With the EDS diagnosis you ought to get better pain relief; I hope this happens for you soon, if it hasn’t already 🙂

    1. I love finding other spoonies who talk about what they’ve overcome and bring awareness to issues !
      After leaving the military, I went to school for Respiratory Therapy. I absolutely loved it but you’re right in saying that sometimes there isn’t any other option to help, and all you can do is be supportive. However , I find that with people who have invisible illnesses, you’re often gaslighted and not even given that support when there’s nothing to be done which is devastating.
      I can’t imagine the pain you must go through but you are definitely a mighty space girl for keeping on 🚀

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