Spoonie Secrets: Issue #1
A safe space for people with chronic illness where they can share untold truths without the risk of being exposed and the fear of hurting the people around them.
This is our first issue of the Spoonie Secrets Project and we are kicking it off with 20 confessions from some chronic illness fighters.
Do you have a secret to share? Fill out this form. Your secret is sent and posted anonymously.
For more details on how this works and the story behind it, please click here.
Trigger Warning: Contains confessions about abuse, self-harm, death & suicide
1. I am a spendaholic.
2. I’ve been told my whole life that I’m faking or milking it so sometimes I even question myself about that.
3. I feel like somehow these illnesses are all my fault, even though I know that’s not possible.
4. I was abused as a child and it continued into my adult and why I’m not allowed (by my own family) to raise my kids because they believe I’m mentally challenged😟
5. When a friend experiences a significant but temporary illness and complains their life will never be the same again and you are supportive but are secretly thinking “you know this is what I’ve been going through for the past 10 years and no, mine isn’t temporary” and then they recover and move on leaving you behind again — no one understands what it’s like to be a spoonie and that’s the hardest part for me.
6. I haven’t had sex in 2 years because it’s so painful.
7. I know I need someone with me because my fainting is not well controlled, so after years of spending little time together when we both had heavy work commitments, my husband stopped working and became my official carer — but I crave time on my own!
8. I spend more time crying than I will ever admit to anyone, especially my husband.
9. My pain levels are always higher than I report to people. I want to be seen as strong but I refuse to let people know how much I really hurt.
10. ANGER — My dad always made jokes about my disease as an attempt to avoid talking about it.
11. When people compare their mild symptoms for not feeling good to other chronic diseases.
12. The years of chronic illness and pain have left me with the knowledge that my mental processing is not what it used to be. I know this, and it hurts.
But it hurts more when your first assumption in every situation is that I am making a stupid mistake or neglecting to do something obvious. So basically, yeah, I can’t think straight, but please don’t keep throwing it up in my face.
13. The scratches on my leg are not from scraping along a rock while swimming but from digging my nails in during a fight with my ex. Digging nails in my skin releases pressure while also punishing myself…
14. I’m worried my boyfriend will eventually grow tired of me or angry at me over all the things he’s missing out on because I’m sick.
15. I’m so tired of people offering me “magic solutions” to my chronic condition that at best are just a placebo, nothing else, or at worst interfere with my evidence-based treatment, has side effects, or make it worse.
16. I’m dropping size. I feel good and am conscientious to eat more. But it scares me that I’m spiraling into a Crohn’s disaster again.
17. Sometimes I wish healthy people would use their time and energy more productively instead of wasting entire days on video games or watching hours of make up tutorials… I can’t help thinking of all the wonderful things I’d rather be doing if I had their health.
18. I took my parents to my niece’s wedding, both 87 it was their first trip abroad. The day after the wedding my father died; moving on 2 years the strain of my ME and caring for my mother has taken its toll. I can’t manage anymore, I want to die. Recently my mother took an overdose and survived with the help of strangers. There is no help waiting in the wings for me, it’s time to die.
19. I’ve lost who I am, what I could do, being able to do things I enjoy, people have disappeared from my life and I’m just surviving day to day. I want to be able to live my life, but I can’t see an end to this illness. I’ve started to consider going abroad for euthanasia. For now it’s just a glimmer of an idea, but once I lose my sense of humour there’ll be nothing left.
20. I tried to kill myself because of the pain. I survived. But I was ambivalent about that survival for a long time. I wished I had died. I saw pain as torment. And I thought existing with that torment was madness. A few years later I tried again. And failed. I am now on depression and pain medication. But I fear being like that again. If they change my medications, for example. I will fear for my life.
If you are a chronic illness fighter and ready to share your untold truth, send it (anonymously) here.
If you have any questions, suggestions, reflections, etc. that you want to send in private, feel free to email me at firstname.lastname@example.org
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