Thursday, May 14, 2015

6 Phrases A Chronic Illness Sufferer Would Rather Hear You Say

When suffering chronic illness you become accustomed to phrases one might hear from the uninformed bystander. While these phrases may come with good intent, many are actually quite distasteful for the circumstances we are facing. Phrases such as, "Everything will be ok," "I know what you're going through," and "God only gives us what we can handle," can be somewhat offensive, or even demean the battle we are facing. Here is a compilation of appropriate affirmations someone struggling with chronic illness would rather hear you say.

1. I googled your illness. 
One of the most frequent issue chronic illness sufferers run into is the lack of understanding surrounding their disease. By simply stating you took the time to research their ailment confirms to them you truly care about the battle they are facing. Taking this small glimpse into the symptoms they may be suffering will help you understand the pain and anguish they must endure daily. This simple task will also reveal their likely prognosis which in turn will help the bystander rule out inappropriate remarks such as, "Get well soon" if in fact the patient will not.

2. I have no idea what you are going through.
It is human nature to attempt to relate to those around you, however; when someone is experiences great trauma that you have never encountered, expressing, "I know what they are going through" is not appropriate. The reality is you have no idea what it is like to slowly watch your body deteriorate unless you are personally experiencing it yourself. A chronic illness sufferer must not only face unimaginable pain, but mental turmoil as a consequence of their disease -- this is not something that a simple stomach flu can spawn understanding from.

3. Sometimes it does feel like God gives us more than we can handle.
The truth is, whether you are religious or not, expressing to someone that their situation will never be more than they can handle is distressing. Chronic illness seizes your life and changes everything you knew about yourself. On a daily basis it feels as though the world is collapse in around you; it most certainly feels at times like it is more than we can handle. While it is a nice sentiment to point out that we are tenacious individuals that can handle what life throws at us, it is more comforting to us when you acknowledge the times we feel overwhelmed and lost.

4. I approve of whatever treatment option you choose for yourself. 
Drastic life alteration such as illness are tough enough without input on how we choose to combat them. While many individuals mean well with their herbal remedies, supplementations, or special diet plans, we must decide for ourselves how to handle the situation we have been dealt. If we decide to use western medicine to treat our illness please respect that choice and recognize that we know our bodies best. Attempting to persuade us that we have made a misinformed choice, or took the easy way out, does not generate a positive feeling for us. Remember to consider that our illnesses are complex, and while a diet may have worked for your issues, it may not help ours.

5. I know you look good, but I accept that you are suffering beyond what I can see. 
The most common phrase a chronic illness sufferer receives is "But you look so good!" Many of us face what are know an invisible illnesses, this means that while we may look healthy on the outside, our bodies are raging war just beneath the surface. Acknowledging that we look "good" seems like a positive affirmation but, it can also belittle the battle we are facing for the phrase, "you must be feeling better," normally follows. Chronic illness is like an iceberg, you can truly only see the tip; the suffering below the surface is extraordinarily large. Please recognize that while we look like a healthy individual their is much hardship beyond what you can simple observe in passing.

6. I recognize that everything might not turn out okay.
There is a significant difference between being pessimistic, and accepting the reality of ones situation. All of us battling illness have had to accept our prognosis, or deteriorating bodies; living in a sugar coated bliss will only harm us in the long run. This attitude does not mean we are pessimistic, but realistically facing our trial. When someone in our life is unrealistically positive, speaking of "cures" to disease which have none, it can be considered quite degrading. In a way this frame of mind expresses that our trial is not as serious as we believed, that we are "making up" the severity of our situation. Many chronic illnesses do lead to death, and while conveying to someone, "everything will be ok" is a lovely thought, truth is, it might not turn out that way. Remind yourself to accept the realism of someones illness -- they have no other choice. This realistic affirmation will not only assist the confidence of the valiant fighter battling disease, but will also create a more comforting environment of acceptance for the bystanders when things do take a turn for the worst.


  1. COULD NOT AGREE MORE !!! I wish there was a way that everyone already knew this

  2. I found your story amazing. I read your story in a Yahoo news service when checking your e-mails and I found your story encouraging and inspiring. I don't have any relatives of friends fighting a long term disease like you, I don't even live in the same country (I'm from Buenos Aires, Argentina) but the way you deal with it is simply amazing and touched my heart. In a world full of people losing hope and struggling to have moments of joy, you just shine for yourself smiling when you can, while you can and that can't be taught. The whole world should know about you and mimic you as well. It sounds so hard but you make it look so simple the way you say: Smile every moment you can and enjoy the small things that makes you happy.
    I send you my support and good vibes to you and your loyal partner in life that you simply call 'husband' and I would love to give you both a sincere hug.
    PS: Sorry if my writing is not correct. I speak english kind of fluently but I'm not used to write letters in english all the time.

    1. Julio thank you so much for your reply! Your comment brought such a smile to my face and happiness to my heart! I am touched that you took the time to write me... Your English is fantastic by the way! :) Thank you so much for your good vibes and kind words for myself and my husband. Hugs from USA!

  3. I too found your story on Yahoo and was absorbed in it since. I googled you and one thing led me to another until i found you here. I'm glad i did and since then I've followed your story. My daughter actually has Osteogenesis Imperfecta which would in scientific terms almost be considered an opposite to your condition. Too little collagen, or a weak form of collagen depending on the type. My daughter is type 3/4 so she makes a weak faulty type of collagen causing brittle bones resulting in fractures, very weak teeth, bone pain, eventually some level of vision and hearing loss will occur among other things. I have to agree with you on one of your posts regarding remarks people can say and the emotional toll they can have. Even at 4 years old, being told "why do you walk like that?" is hurtful. Lifelong illness is not always understood but those few people that open their doors to their journeys have my admiration such as you. My daughter will know your story when she gets older :)

    1. Hello Rose! Your comment touched my heart! I wish you and your daughter strength through life. Battling illness is so difficult, especially at such a young age! What a fighter she is, and will be. Hugs!

  4. I honestly feel as if a total celebrity just replied to my comment !:) But even better, it's you! Thank you for taking the time in your extremely busy world to post such kind words. Seems almost magical, but she's been all happy and giggles since i posted that comment.

  5. I saw your story in Daily Mail as I am waiting for my daughters to finish their dinners. Honestly, I probably would have stared at your tank as well (and then googled it afterwards) but I was and would have been thinking - I hope its something brief and she can carry on as normal. My heart brakes for you. I applaud your attitude and am ashamed of my own for we cannot ever put our problems into perspective for more than 5 min. And lastly, as a professional stylist, I thought you looked beautiful. Sending happy thoughts and big warm hugs from Connecticut.

  6. As a person with manic depression who is regularly asked by doctors "why are you here, I thought that you were looking for coping mechanisms but you seem to already have a good handle on yourself". It's hard to get help with depression when you successfully put on a positive attitude on, in order to avoid the medications that make you feel sick and empty; and when you know yourself.
    Thank you, seeing your post gives me hope.