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25 Things People With Ehlers-Danlos Syndrome Mean When They Say 'I'm Tired'

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“I’m tired.” It’s a phrase people generally say at some point in their life (or at some point during their day, if you’re like me). However, when you live with Ehlers-Danlos syndrome (EDS), “I’m tired” can take on a whole new meaning.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

EDS is a chronic illness that affects the connective tissues of the body, often causing fragile tissue, joint hypermobility, and many other symptoms, according to The Ehlers-Danlos Society. While EDS can cause fatigue, that’s not always what people mean when they say they’re tired; “I’m tired” can mean so much more.

Saying “I’m tired” may be a way for EDS-ers to express that something is wrong, without having to share the details. Unfortunately, many people with chronic illness may feel like they can’t share how they really feel – sometimes out of fear of not being understood, or being seen as “complaining” or “attention-seeking.” When someone with EDS expresses that they are tired, it should never be taken lightly. Whether they are genuinely tired or are saying this phrase as code for something else, EDS-ers deserve support and understanding.

While you’re never obligated to share information about your health, you should also never have to feel like you have to hide how you’re really feeling; in fact, talking about it is a great way to spread awareness about EDS. That is why we asked our Mighty EDS community to share what they mean when they say “I’m tired.” Hopefully this will help others better understand what being tired is really like for those living with Ehlers-Danlos syndrome, so they can provide zebras with the support they deserve.

Here is what our community shared with us:

1. “[‘I’m tired’ means] I am having a bad day in any way — worse pain, GI symptoms, bad mood — and ‘tired’ is a more socially acceptable way to explain what someone may have noticed.” – Carolyn R.

2. “I have reached my maximum negative spoon capacity. If I’m out somewhere and I say I’m tired, it means we need to go home. People usually just say ‘oh yeah I’m tired too’ and I’m just like, no, I’m not talking about feeling a little worn down from the day, my body is literally going to shut down if I keep doing what we’re doing. It’s terrifying, embarrassing, and so discouraging. I just need to be listened to with love when I say ‘I’m tired.’” – Amayah D.

3. “’I’m tired!’ Coming from a zebra is one of the only occasions where ‘I literally can’t even!’ means that you literally cannot. even. Not even a little. It means sensory sensitivity and high pain levels. It means feeling like you’re wearing weights from head to toe. It means dizziness and brain fog. Nausea, fainting. It means… I literally. Can’t. Even.” – Snow B.

4. “I’ve pushed myself as far as I can, anything else is dangerous for my health.” – Josephine W.

5. “I’m tired means I have nothing left. It means I’m exhausted to my bones. It means if I don’t rest soon, I feel like I could just die.” – Jennah A.

6. “When I’m tired from my EDS it’s like every single cell in my body is fatigued. It’s not just being sleepy. And the worst part is when I’m at my most tired and fatigued I actually have a hard time falling asleep.” – Sandi D.

7. “I’m tired is usually my first step in explaining my physical and emotional exhaustion. It can mean anything from ‘I need a rest’ to ‘I kind of wish I didn’t have to exist right now because my body and mind and soul have ached so badly and constantly for so long that I just can’t take it anymore.’ Sometimes tired can be fixed with a nap. Sometimes tired means breaking down. Sometimes tired means any and everything, or nothing at all except conversation feeder to explain away why I’m so slow (or under eye circles, brain fog, speech problems, or mobility issues). But make no mistake, in one form or another, I’m always, always, very, very tired.” – Daisy R.

8. “I am tapped out. Just everything, physically, mentally, emotionally, I can’t give anymore.” – Jennifer C.

9. “It means I feel battered and worn out from walking through issue after issue, where when one thing gets fixed another falls apart – and the fact that whenever something happens, it takes me back to square one all over again, with all the strength I’ve gained back being lost. It means I’m drained from having to keep track of all my medications, and the many doctors’ appointments. I’m exhausted with having to keep track of my energy levels to make sure that I don’t overdo it and end up in the ER again from the pain. I’m feeling sick of having to break and cancel plans with people I love, and then constantly fearing they’ll eventually give up on me, and not understand. It means I’m weary because it feels like it all never lets up. There’s so many things I mean when I say I’m tired, and being simply tired isn’t usually it.” – Laura P.

10. “’I feel like I’m dying but I’m [going to] push through anyway because my being sick annoys people and makes them angry.’” – Ashley V.

11. “I literally cannot hold my body up anymore and must lay down.” – Monica J.

12. “Please don’t ask me to do anything or talk or even think… actually don’t even talk to me because every system is overwhelmed and I cannot function!” – Nicole D.

13. “When I say I’m tired I really mean too many joints have gone out.” – Becky S.

14. “When I say I’m tired, it means I need a break and the pain is too much. It means I can’t fight anymore today, my body needs a break. It means mommy isn’t making dinner, we are ordering out. It means I need to lay down, standing and sitting hurt. Worst one of all it means mommy is in so much pain we can’t cuddle and play.” – Ashlynn I.

15. “When I say ‘I am just tired’, I usually mean that I am in a lot of pain and want to be left alone to rest. It’s a much less invasive way to tell people to leave me alone, without people thinking ‘oh, she’s moaning about her EDS again.’” – Charlotte D.

16. “I have brain fog too badly to verbalize exactly how I’m feeling.” – Kerrie W.

17. “When I say I’m tired, I usually mean that I am so fatigued that I can’t think straight, can’t focus. I may not have the energy to eat solid food, or even drink fluids. It means I have over 40 years of sleep deprivation and have no clue what it would feel like to wake up feeling rested or refreshed. It means I am doing everything I can to keep my eyes open and to attempt to function at all. It means I’ve just run a marathon while carrying an anvil, on no sleep, despite sitting on my sofa doing absolutely nothing.” – Leah R.

18. “I don’t ask for help when I should, but saying ‘I’m tired’ is my way of asking.” – Kate K.

19. “I feel like I’ve been hit by a truck. My legs may actually spontaneously give out. I feel so exhausted that it hurts to breathe. I am so tired I could barf. I am so sick and tired of being sick and tired.”  Jennifer G.

20. “I just want to go home.” – Maggie N.

21. “It hurts too much to be conscious.” – Ellie H.

22. “My body is tired of holding itself together – I am tired of holding myself together!” – Shae C.

23. “It actually means that I physically cannot do whatever it is you’re asking of me. It means my body has reached its limits after the daily struggle of just holding itself together, and I’ve reached a level of pain that cannot be easily hidden in public. My body is telling me to stop and recover. If I’ve said this to someone, it also means I’m praying they don’t continue to push and make me feel guilty for declining.” – Tessa H.

24. “I am in body-falling-apart mode.” – Nick B.

25. “It means I can’t fake being OK anymore.” – Megan M.

Getty image by LUMEZIA

Originally published: April 11, 2019
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