Today is Rare Disease Day and I thought I’d share some things I hate about having a chronic illness. I’ve suffered with chronic pain for sixteen years, and here’s a few things that are shitty about it.
- The actual illness and comorbidities are crap, painful, stressful etc.
- Constantly cancelling/rearranging plans
- Inability to be spontaneous
- Never knowing how well you’ll feel
- Always worrying about accessibility
- Judgement from people that don’t have your condition but think they know it better than you do
- Pretending to be okay so nobody worries
- People only see your good days and assume you’re faking
- Insensitive comments
- Lack of independence
- Simple tasks drain so much energy
- Viewed as a drug addict
- Mind and body are affected
- You lose people
- Feeling guilty for spending time in bed/cancelling plans/wasting days
- Always apologising for your shitty health
- Difficult to meet new people
- Coming to the realisation that this is your life
I understand that this isn’t the most positive of posts but I’m a strong believer in writing about the good, the bad and the absolute worst, because having a chronic condition certainly isn’t rainbows and unicorns…if only it was, hey!?
I can completely relate to every single one of these points! I don't think people realise how hard life is with a chronic illness (or 10!). Sending lots of love, rainbows & unicorns your way! Xx
Tania | When Tania Talks
I can completely relate to every single one of these points! I don't think people realise how hard life is with a chronic illness (or 10!). Sending lots of love, rainbows & unicorns your way! Xx
Tania | When Tania Talks
Thank you very much for precise list of our pains. I am totaly alone in my microcosmos because all people around me and my family thinks that I use drugs and that I fake every single day. I am so lost in my rare undiagnosed strange illness, in its effects, in side effects of "drugs" I am taking, in my husband wish to divorce and take our child with him speaking" You are not a girl I married with", I am lost in thinking of future, of job I can not work, of …
Thank you very much for precise list of our pains. I am totaly alone in my microcosmos because all people around me and my family thinks that I use drugs and that I fake every single day. I am so lost in my rare undiagnosed strange illness, in its effects, in side effects of "drugs" I am taking, in my husband wish to divorce and take our child with him speaking" You are not a girl I married with", I am lost in thinking of future, of job I can not work, of …
Enjoyed this interesting post. You say this isn't a positive post but I thought it was. I like reading eye opening blog posts xx
http://combinecontent.blogspot.co.uk/2016/02/periods.html?m=1
Nice and tidy catch all post on the suckiness of being a spoonie. Makes me feel less alone in my head state.
Thank you
This, too. Especially feeling like life has become primarily made of apology.
They really don't. Thanks lovely! x
I'm really sorry to read this, sending you lots of love x
Aww thank you x
Not a problem x
Exactly! x