Saturday, June 25, 2016

To The 'Well Intentioned' Individual Giving Medical Advice

You are my family, my friends, my social media followers, and sometimes even strangers on the street. I am grateful that you care about my situation enough to share your knowledge in hopes that you will ease my suffering. Thank you for displaying what you believe is kindness and compassion towards my difficult circumstance. I know you mean well, and that you honestly believe you can help.
There is only one problem...

You often become abrasive, and lose understanding that this is my battle, my fight, and my body. I have found your relentless comments on every medical update I post, your strong opinions on my social media accounts, and even private messages conveying that you “know how to cure” my incurable disease. You tell me I am making mistakes in my treatment, and that if I were to just “treat the root cause, leave western medicine behind, and take special supplements, oils, and herbs” I would be disease free. You imply that my treatment choices are the reason I am still sick. 
Your harsh stance makes me uncomfortable, and is not helpful or supportive, but hurtful. 

Please understand I am open to alternative treatments, but also be aware that I have a fast progressing illness, and taking the time to experiment with “miracle cures” could actually cause my organs to fail.  I know western medicine is full of toxins, and poison, and will destroy my fragile body if my disease doesn’t get to it first, but for now, it is my most viable option. When my health spirals, these drugs keep me alive; my physicians prescriptions keep me with you another day. Please accept that your “cure,” though it may have worked for your cousin, or dozens of people in a online forum, may not be right for me. Every patient is unique, and every body respond differently. While an oil may have relieved your pain, it could cause me to go into anaphylactic shock. While a diet may have improved your quality of life drastically, it could cause me excruciating pain as my body doesn’t properly digest and I am on a feeding tube. While the approach to medicine you swear by may have put your disease into remission, my body may reject it and lose valuable organ function waiting to see results. My treatment choice is literally life or death.

You see, I am in no way against your treatments, I am actually intrigued by most of them and hope I am stable enough someday to experiment with them. However, they are typically expensive, not covered by insurance, and require in many cases to attend treatment in another state, or county. As many patients battling illness, I am extremely tight on funds and cannot physically, or financially afford your experimental, ‘no guarantee’ treatment at this time — It’s true, not even western medicine is guaranteed, but at least the statistics are in my favor. Possibly, once I am medically stable enough to travel, and have extra money, I can use your ideas to help improve my quality of life — but right now my focus and my funds must be on staying alive


Next time you feel the urge to give medical advise please ask yourself these three things:
1. Is my advice physically possible for the patient?
2. Is it my place to give advice?
3. Is now the appropriate time to give advise? 


Then ask yourself this one very important thing:
1. Am I respecting the patients decision?


By using these simple guidelines you will take unneeded stress, judgement, and negativity, out of a patients already hectic life. Remember that we are battling our bodies, and if we had the choice we wouldn’t be sick at all. You have no idea how hard of a decision it is to use one evil to fight a greater evil. Hooking up to that infusion full of chemicals is not anyone’s first choice — but sometime it is the only choice that generates the ability to live another day. There will come a time where I may ask for advice, and I know you will be waiting in the wings — for that I am appreciative. 
Instead of continually pursing me with your opinion on how I should be implementing my treatment, show me support by accepting, and respecting my decisions.

18 comments:

  1. Sending you a big hug, my online friend!

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  2. You rock Chanel! I admire you for staying true to yourself and sometimes it may be all we have control over. If everyone listened to hear instead of to respond that in itself would be a healing to the soul. You have come so far and are doing great! There are some wonderful treatments or potential cures out there but they render useless without the means to access them. Some of us can understand and some in an desperate but vague attempt to help cannot understand exactly why humanity would put a price on life which is chunk change to them. I can't understand everything you are going through but I do know a few things. When you accepted my friend request last year, I thought what an privilege it was to have such a beautiful strong friend and now even more so I am drawn to such beautiful soul. You do what's right for you my friend. Whatever makes you feel better, whatever brings happiness or shines light in a world shaded with illness. Shine On Chanel!❤

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  3. You rock Chanel! I admire you for staying true to yourself and sometimes it may be all we have control over. If everyone listened to hear instead of to respond that in itself would be a healing to the soul. You have come so far and are doing great! There are some wonderful treatments or potential cures out there but they render useless without the means to access them. Some of us can understand and some in an desperate but vague attempt to help cannot understand exactly why humanity would put a price on life which is chunk change to them. I can't understand everything you are going through but I do know a few things. When you accepted my friend request last year, I thought what an privilege it was to have such a beautiful strong friend and now even more so I am drawn to such beautiful soul. You do what's right for you my friend. Whatever makes you feel better, whatever brings happiness or shines light in a world shaded with illness. Shine On Chanel!❤

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  4. Thank you for this post. Please know I am sending you a giant and yet gentle wide armed hug your way. Not only was my heart breaking yesterday from your health update but I have just started a 13 day "vacation" with my in laws.
    They disapprove of taking pills and poison and I I mention a complication from my illness I am told not to dwell on it or its not my disease but simply aging (I am 38 wth !!) It's more exhausting than anything else. But these are my new in laws. And we live a 4 hour flight away. So I'm trying to make the best f it but I can feel every muscle tense up whenever they speak to me. Gentle hugs. A follow with a cousin disease - ankylosing spondylitis

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  5. Thank you for this post. Please know I am sending you a giant and yet gentle wide armed hug your way. Not only was my heart breaking yesterday from your health update but I have just started a 13 day "vacation" with my in laws.
    They disapprove of taking pills and poison and I I mention a complication from my illness I am told not to dwell on it or its not my disease but simply aging (I am 38 wth !!) It's more exhausting than anything else. But these are my new in laws. And we live a 4 hour flight away. So I'm trying to make the best f it but I can feel every muscle tense up whenever they speak to me. Gentle hugs. A follow with a cousin disease - ankylosing spondylitis

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  6. Chanel��You dear lady are the epitome of being brave & putting on you best face. I admire your honesty, openness & tenacity. No matter what anyone says or does to try to help; it is & will always be your diagnosis & your treatment plans. Stay true to yourself & share your beautiful smile with the world. You never know who you may be inspiring. God be with you ��

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  7. Chanel��You dear lady are the epitome of being brave & putting on you best face. I admire your honesty, openness & tenacity. No matter what anyone says or does to try to help; it is & will always be your diagnosis & your treatment plans. Stay true to yourself & share your beautiful smile with the world. You never know who you may be inspiring. God be with you ��

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  8. Your website is very cool and interesting. I was amazed it was really great

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  9. MUST READ,
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    5 years ago I had warts, I was treated with some liquid applied to the warts they continued to grow and spread... The next 2 doctors did laser surgery to remove them. 1 year after the surgery, they grew back close to where the 1st ones were' so I was finally told it was hpv. I have had it for very long time, I contract it from my cheated boyfriend and I found out he was also infected and I end up the relationship between us. the warts was so embarrasses because it started spreading all over I have be dealing with this things for very long time the last treatment I take was About 2 years ago I applied natural treatment from Dr okosun herbal temple, a week after applying the treatment all the warts was gone. it's now 2 years and some months I don't have single wart or any symptoms of hpv. wow"" it's great, Dr okosun has finally cured me. Anyone living with hpv contact Dr okosun for natural treatment.
    His email address: doctorokosunspelltemple@gmail.com‎ or call or whatsapp him on +2348107584479....

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  10. These people are everywhere, offering craziness just as you write about! Sadly, they don't get the hint. I had to go to the hand doctor last week and his nurse gave me the third degree about all my RA meds. Really???

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  11. I could not have said this better myself. So few people understand what support really means to somebody like us. I'm so sad to hear about your health update and I hope things improve soon and as another person said above, that you find some light in this dark place, it can be found in the smallest of things. Love to you from South Africa❤

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  12. My youngest has a blood disease due to a spontaneous mutation. The only cure is a bone marrow transplant. Her first one failed. She post 101 days from the second one. Ive been told she just needs essential oils. Or "have tried wheat grass?" Hmmmm....considering my daughter is on gut rest and survives off of IV TPN....my answer is no lol I know people just want to help. And I'm all about some natural remedies. But, at the end of the day if it weren't for modern medicine people like you and my daughter wouldn't have a fighting chance. Thank you for your transparency.....

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  14. Thank you ... for your courage and your clarity ... I am in a similar struggle and I'm often confused and frustrated by well meaning but poorly informed "helpers" ... you put my thoughts and feelings into words I sometimes grope for in the dark

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  15. This has resonated with me, as I've recently went through this by joining group to learn more about a medication I was placed on for pain, and they kept telling me that I needed to come off of all my "toxins" I told them natural therapy and diet changes I agree with but they are complimentary treatments, to suggest me going off of my pharmaceutical medication. I will quickly be in a wheelchair, then I received very bitter advice about how I needed to look deep into my issues that was causing my pain in the first place. All I can do is hope that group doesn't cause harm to their followers. It's sad that we constantly have to advocate for ourselves within our own circles. Much positive thoughts being sent your way, and thank you for writing this, it was very well done :)

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