They Dont Believe Me When I Say
I Am Ill.
What Can I Do?
Disbelief And Chronic Illness

Words to help cope with disbelief

"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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Disbelief and invisible illness - "but you don't look ill"

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 Encephalomyelitis (CFS/M.E).

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. :-)

Audio - It's not your fault (2 minutes)

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."

The demands on you when they don't believe 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.

It 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 deny the illness by telling yourself the people who don't believe you are ill must be right:
    “I can't be ill or they would believe me.”
  • You may feel angry with the people who don't believe you.
    “I hate being ill. Why on earth would I make up an illness?”

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.

CFSME is not psychological

What Can You Do About Disbelief and Illness?

Improve communication skills

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.

Cope with Disbelief by affirming your own belief

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.


Questions to ask yourself when you have the experience of "They Dont Believe Me When I Say I am Ill"

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.

Positive self talk: What would you like someone to say to let you know they believe you are ill?

Positive Self Talk to to ease 'They don't believe me"

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.

  • Look in a mirror as you say the words.
  • Alternatively, imagine yourself in your mind standing in front of you and let this new self tell you what you need to hear.
  • Commit to saying these helpful words 30 or 40 times a day for a few days so they become a habit.
  • Most importantly, engage in positive self talk at the very moment when you realise you need someone else to say it to you.

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.”

Why would someone act as though they dont believe me when I say I'm ill?

how to cope with disbelief

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.

ME illness doctor quote

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Other articles relevant to They Dont Believe Me When I Say I Am Ill

  • Tips for healing self worth in a time of illness - notice and thank yourself for all you do so well.
  • Get informed about the illness with which you live. If you get the chance, pass on some of this information to the person who is acting as though they don't believe you.
    For example, you can quote Doctors who speak about the severity of the illness you experience. If you live with CFS/ME, click to read some appropriate CFS quotes.
  • If you are living with chronic illness at a certain level of severity you may need to use a wheelchair or other disability aids. It is sometimes much easier for other people to show understanding and belief when you use such equipment.
  • Read my healing poem which touches on the feelings of isolation that can accompany chronic illness.
  • A great site by my colleague for Quotes about Moving On.
  • What is a spoonie?  - If you are living with chronic fatigue, you can explain that you have 'run out of spoons'!
  • An excellent article by Toni Bernhard on Psychology Today: The Stigma of CFS

Move from "They Dont Believe Me when I say I am Ill" to collect your free ebook on the stages of grief of chronic illness.

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Disclaimer: I am not a medical practitioner. The articles on this website are not to be taken as medical advice. Please consult a medical practitioner as necessary.

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