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How to Treat a Chronically ill Person: What to do and not do

Don’t leave me

My physical body might be suffering but I still have the same soul. I am still the friend, lover, colleague, or family member I was before. I need you in my life, even if I can’t show it. I don’t expect you to treat me differently, in fact I don’t want you to. I just want to be myself. I might have to make some modifications to what we are able to do together, but please, don’t leave me alone. If you were in my life before I still want you in my life now, and I need you more than ever.

Do: Stay connected

Text me, send me an email. I will respond as soon as I am able. If you can, come to see me every now and again. I need some gentle healing hugs. <3

Don’t make suggestions

Please don’t ask me if I have tried “XYZ”. I have. I have exhausted every. possible. thing. I could do for myself, starting with the more natural options. I have spent thousands of hours and dollars on treatments that are supposed to fix me. The more intense the sickness, the more searching I have done. Believe me, nothing has cured me yet. Some things help, but I typically find these things by talking to other patients and doctors. If you are not a fellow sufferer or doctor specializing in what I have going on, please don’t suggest I try anything.

Do: Ask questions

Ask me what I am currently trying, because I am always trying something new. I am always happy to talk about new treatments and research I have been reading about. And it will give us some easy conversation!

Don’t tell me I need to be more positive

NEVER EVER tell a person who is chronically ill that they need to change their attitude, or be more positive. If I seem down it’s because my body is holding me back from what I actually enjoy in my life, and that makes me sad. I am in prison. When you don’t have health, it’s difficult to keep anything else you enjoy in your life. When you are in so much pain and agony you wish the good lord would just take you away, the last thing you want to hear is to be more positive. I am aware and trying to maintain a positive attitude, despite overwhelming difficulties. Please be aware of this. You would never tell a person with cancer they need to change their attitude to be cured, chronic illness is the same.

I am in a heavy daily battle for a glimpse of normality.

Do: Bring me sunshine

If I seem down, help bring some sunshine into my life. Bring me a flower, take me on a car ride, tell me stupid jokes. Give me a reason to have hope. Call me up and say a prayer with me. Send me an uplifting song to listen to. Avril Lavigne- “Keep holding on” is a great song to pass on. It doesn’t have to be a big gesture, anything will do.

Don’t Criticize

I am not here for attention. I am not here because I want to be lazy. I don’t like being sick. I want to be well. I want to follow my dreams. I’m not a hypochondriac. If I tell you there is something wrong, there is really something wrong. How do I know? Because I remember what it was like to feel normal. This is perhaps the hardest part of all.

Do: Believe me

I know my body and I know how I am feeling. If I tell you there is something wrong, help me make a doctor appointment. Ask what you can do to help me get through whatever it is. But please don’t doubt the motive behind what I am doing.

ALRIGHT! PHEW. That was a heavy one. What would you add to my little list? Email me or write a comment! I might add them later.

Thanks for reading.. Sending all my hugs, love, and kisses!

PS. If you want to be added to my email list please email me: bushjackie16@gmail.com

4 Comments

  • Nancy Stout

    I kind of relate Jackie it is hard to deal with chronic pain I’ve felt with it for several years now. I’ve never got where I wanted to leave this life though. I have to much to leave behind and I love them with all my heart. I hope that you will come through as courageous as I know you are. Love nancy

  • M Cole

    Hello Jackie darling how lovely to meet you. M E is just starting to be believed here in the U K , although there are still unkind people in the UK who disbelieve .
    My daughter has had M E for such a long time and we wait for magic to happen , knowing that it will happen . As a parent I look every day for the latest research , not because I think its found but because I know it will be found .
    And what a party we will have a well deserved boost in energy ,able to stay up late, foods she could not have will be piled high , dancing , laughter and music for as long as she wants .
    There will be no disbelievers and no nausea, pain ,fatigue , food reactions etc etc .
    Hang on in there , all will be well and you will get an invite xxxxx

  • Rachael Green

    Love this! Especially the part about not telling us to be positive. Of course people have good intentions, but it’s very dismissive of our pain/struggles and can be hurtful. <3

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