"They dont believe me when I say I am ill."
Some people who are living with illness deal with a lack of belief either from someone they love or from professionals - medical or otherwise.
Even if someone does believe you are ill, if they do not express sympathy and do not offer you help when you need it, you may feel disbelieved .
And when you have had some or many experiences of disbelief you may start to look for it in others you meet.
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Encountering disbelief can be all the more common or all the more upsetting for those living with invisible illnesses such as Chronic Fatigue Syndrome / Myalgic
CFS / ME is one of the chronic illnesses where you may not look sick. There are many illnesses like this. For example, many people with cancer look wonderfully healthy.
In order to live well with illness and seek greater health you may do many things...
You may learn health management skills.
You may find the right level of exercise for you - not too much exercise, not too little.
You may find a good diet (for CFS/ME) and take up alternative healing methods.
It takes work to improve your health management. It can be so frustrating if your hard work is not acknowledged, and instead you are left feeling, "They dont believe me when I say I am ill."
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It may help to remember that even if you had an illness with clear tests available and a clear treatment pathway, you might still have the experience that people don't believe you.
No one can know how much pain or discomfort another person is feeling.
Equally they cannot know your wonderful capacity for joy and for moments of profound peace. :-)
If you’re having an experience of “they don’t believe me” you may also have taken on the message “it’s my fault I am ill”.
This is a short audio I made for a dear friend living with
severe Myalgic Encephalomyelitis to give her the message
“it’s not your fault you are living with illness. You are amazing.”
I find it powerful to listen to myself, and I feel moved to share it with you as a visitor to www.HealingCFSME.com.
My friend lives with an inadequate level of support, struggling to get sufficient rest to allow her to maintain her already low level of health. Perhaps you relate.
I have edited it to take out her name so there is a little clunkiness at one part.
I call her “lovely lady”. So for any gentleman listening to this, please hear me tell you that you’re a “lovely gentleman” :-)
My friend and I share the spiritual journey so there is a
reference to this.
But even if you don’t hold spiritual beliefs I hope you will receive the message of “it’s not your fault” and the implied messages of
"I don't even need to believe you. I know this is what you are living with. I see you."
It can be crazy-making if you encounter disbelief when you are ill.
You may need to take active steps to promote your sense of sanity. If so, self healing methods may help.
can feel lonely to find out that someone
is not willing to share your life with you once you live with illness.
You may choose to find a physical or online community of people with the same chronic illness to bolster your sense of connection and of being seen and accepted as you are.
Disbelief delays you from grieving a loss of health
If someone is not sympathetic, doesn't believe you are ill, or doesn't help you in a time of illness, it may delay you from feeling your grief about being ill and moving towards acceptance:
You may switch between denial and anger (two of the stages of grief ).
In this way you may accidentally avoid feeling the other feelings of grief, and thereby slow your progress towards accepting an illness.
If you are experiencing disbelief in a time of illness, you may want to improve your communication skills.
I recommend: The Dance of Anger by Harriet Goldhor Lerner.
I have also read enough of Non-Violent Communication by Marshall Rosenberg to be able to recommend it highly.
Both books have hundreds of 5 star reviews on Amazon. You can buy the books on Amazon using the links above.
Learning communication skills can improve your chances of communicating your needs to another. But please know that, even when you explain clearly and calmly, there will be people who still don't believe you are ill.
I know it can be hard, but please be willing to believe yourself even if someone else doesn't.
You have little influence over another person. But you can work (or play) to overcome any disbelief about illness in your own mind. Here are some questions to get you started.
Ask yourself the following questions.
I have given answers to act as affirmations.
“Do I believe I have an illness?
Yes, I do believe I have an illness.
Am I waiting for someone else to believe I am ill before I do?”
No. I am willing to take the lead. I believe myself.
“Am I willing to feel the grief that comes with the knowledge that this is happening to me - I am living with illness?”
Yes, I am willing to feel the grief that comes with the knowledge that this is happening to me - I am living with illness.
“Am I willing to feel the comfort that comes from knowing I am my friend through it all.”
Yes, I am willing to feel the comfort that comes from knowing I am my friend through it all.
What would you like someone to say to you to let you know they believe you are ill and have an understanding of what you are going through?
What do you need to hear to overcome the pain of the 'They don't believe me" feeling?
Engage in positive self talk.
Learn to be a good friend to yourself by using positive self talk to give yourself the belief and understanding you need.
For example you might say:
“I know the truth about how you feel right now.
I am so sorry your health isn't good.
I can see you are having a tough time.
I admire your courage.
I see your strength.
I want you to tell me the truth about how things are for you.
I believe you.”
One of the reasons disbelief and illness can go together is because
someone wants you to continue to play a certain role in their life.
Click through to learn about the many family roles that are harder for you to play in a time of chronic illness.
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I am not a medical practitioner. The articles on this website are not
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