A Letter to People who Don’t Think my Pain is Real

Good Afternoon!

As (mostly) usual, check out the Song of the Week page for an awesome recommendation from a lovely spoonie friend!

Dear Friend, Acquaintance, Family Member, Random Person Staring at me with my Walker, or any other person who judges me without knowing anything about me and/or my condition/s and therefore should have no opinion on my medical situation,

This letter is for you.

I usually try to steer clear of you, as negativity is not permitted in my bubble of self care, but alas, you continually attempt to pop my beautiful pink bubble.

I used to think it was easy to avoid you and others like you, but as my medical conditions make it more challenging to survive without the need of mobility or accessibility aids in public and my life revolves around the illnesses more than anything else, we seem to be at an impasse.

I have several chronic, autoimmue, life-altering illnesses, whether you believe they’re real or not. And they are, just to be clear, as years of research and medical documentation support their existence (and I’m not on all of these medications for nothing).  These conditions, illnesses, horrible-things-that-have-happened-to-me are in no way fake, misleading, or caused by anything I have done. I do not choose to be ill and miss out on work, bearing children, or vacations with my husband. I do not want to use a cane or walker around the house or in public (even if they are pretty cute), because in reality, it’s all a huge inconvenience. I do not want to spend hours on the phone arguing with insurance companies, employee benefits, or disability services. I don’t want to be in agony over the sound of birds chirping, motorcycles starting, or my husband trying to hug me. This is not a fun life. But it is my life.

This is my life, and it is not yours. And just because it does not make sense to you does not make it any less legitimate. These are illnesses I didn’t even know existed until they happened to me. But now that I know they do, I am a champion for these causes and for the people’s lives they’ve affected. I do not write this letter for your benefit or mine, I write it for theirs. I write this for my friends around the globe who encounter naysayers and hurtful doubters who make their already difficult lives that much harder. Nobody chooses to live in pain, but you are actively choosing to be ignorant to it.

I’ve heard you say things like “just push through it,” or “why are you in bed still?” or “if you just keep moving,” or one of my all time favourites “if you just take this one supplement your life will be completely different” which shows me just how little you know about our illnesses. And if you know that little about them, you are in no position to comment on how we survive them. If you think that one lap around the dog park is not enough to wear us out for days, you have no idea what we’re dealing with.

I’m sorry if this is coming off harsher than I had intended, but enough is enough. If you cannot stick by us, support us, encourage us, and just generally try to understand what we’re going through, then we’re going to have to cut ties here.
Speaking for myself, I cannot push through these exchanges anymore. I am begging for compassion, and if you are unable to provide that, there is nothing left to say.

Thank you, our friends and family who have shown us unending support and love. It means more to us than we can say.

Love,

Courtney

Oh just another Monday. Last week.
Oh just another Monday. Last week.
Couldn't survive without these two.
Couldn’t survive without these two.
Courtney

Courtney

Hey!
My name is Courtney and I am a wife, a mom to a pup and cat, and I just happen to have a few chronic illnesses that have drastically changed my life. I’ve gained a brand new perspective of life and who I want to be while I face these new challenges.
I am so excited about this new phase and meeting fellow Chronic Warriors! Please join me!
Love and Gentle Hugs xx
Courtney

5 thoughts to “A Letter to People who Don’t Think my Pain is Real”

  1. Hi – I’ve been following you on Instagram for a while – I love your optimism in the face of these stupid conditions! I was diagnosed with ME in August last year after basically begging my doctor too because I knew my body and this was just NOT right – I have only just now been referred to my local ME clinic ( am still awaiting appointment) but just seemed so crazy that I was having to try and convince these professionals that something was wrong with me !! It’s not at all that I wanted there to be something wrong – I wouldn’t wish this on anyone! But I needed it to be ‘something’ and not in my head. My family and friends have been mostly supportive but there is a lot of mis-understanding and confusion and I constantly have to explain myself or justify myself (which is exhausting in itself!)
    So I’m going to try and take a leaf out of your book and try to ignore the crap and focus on the positives (but not beat myself up when I have to go back to bed!) xxxxxxx

  2. Amen! {{clapping hands}} So many times I’ve wanted to say all of that to family and friends who just don’t get it and have no intention of ever getting it. Well done, Courtney!

  3. Hi thanks for writing in this. Not enough people are honest about how we are feeling, and the words of others are unhelpful and hurtful. This honest post was a good read. I hope you will check out my blog too where I write about my fibro story amongst other things. I think this post has inspired me to write a similar post. So thank you and I wish you all the best and hope good days are more than bad xxx

  4. Wow, spot on with what you boldly 100% truthfully stated!!!!
    It is so hurtful at some of the comments, questions, conversations I have endured too at times. I have thought often…..”oh they are lucky I’m patient & nice.” Or they are going to catch me on a really bad day when it literally took ALL of me to muster up the strength to venture out and I’m going to get blasted with tons of pointless information, advice, condenscending statements or drilled with this…..”so & so has a friend that has what you have, they are back working full time & their all better.” UGH!!!!
    Dealing with chronic pain and medical issues is exhausting enough, we should not have to endure ignorance too, but it’s part of this journey I am starting to unfortunately realize .
    Well, thanks for your candid blog, I LOVE it!
    Take care!

  5. I’ve lost many “friends” and even my parents.. So called parents, I had to face looking back, that these have always been shallow people who are happy to use you but not happy to return the favor, to be “brought down” by my illness (lol really), to be bothered with me. Accusations of avoidance, faking, just needing to “believe more” or whatever else yes, if you just (take this, do that). My dad had the nerve to send me an article saying that my illnesses were from being on my phone so much… Never mind I was diagnosed BEFORE I even subscribed to texting and later Internet on my phone (I was behind in it as I didn’t want to spend the extra money) but none of them can accept that there is no cure. I’m not going to get better, and accepting it is NOT the same as giving up. It’s sad if they can’t deal with seeing me like this, despite the fact I don’t complain either, I can’t imagine how they would survive LIVING with it. As bad as it is, and I wouldn’t wish it on anyone permanently…. I do sometimes wish they had a taste of it… but the thing is, they would get better and go back to their same old ways and sayings. Thank you for standing up for us. It’s the most pain of all the pain we face. But it is a pain we can get through.

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