What is the best advice you have received?
The world is full of people wanting to give “advice” to chronically sick people. Often this is not particularly useful or even realistic advice. Here are some bits of not useful advice that I’ve been given over the years:
- Maybe if you slept more. (I could sleep all the time and I wouldn’t be any less exhausted).
- Maybe if you had a job. (I have got a job).
- What if you got out more? (Going out makes me worse not better).
- Are you sure you’re not getting older? (I’ve been ill since 16, most 16 year olds don’t feel like a 90 year old).
- If you’d get more exercise? (Seriously? Heard of PET?)
- Are you sure it’s not just in your head? (Yes I am sure. Don’t even start me in that one!).
- Are you sure you’re not depressed? (It is not in my head. Yes I’m depressed but you would be too if you were in my situation).
- Remember there are people worse off than you. (Yes, I am very aware of that and very grateful, trust me, it’s what keeps me going on my bad days. BUT there are also many people better off than me and I am allowed to have my bad days and that is okay!).
- Have you ever considered just toughing it out and pushing through it? (*sarcasm alert* nope, never, not once did that thought occur to me, it’s not like I worked my way into a wheelchair and then into my bed for 18 months, oh…. wait…).
- My cousin/wife/aunt/best friends dog had that Illness and she had (insert ridiculous, expensive, unproven treatment here) and she’s fine now. (Good for you for you cousin/wife/aunt/best friends dog, I am so glad she is recovered. Have you studied that ridiculous/expensive/unproven treatment, do you know how it works? Is it backed up by peer review? How badly did they have my Illness because I know that the chances of me recovering at my previous severity are slim to none. *shocked look* okay then, shall we move on?).
- Have you tried having a more positive attitude? (I have got a positive attitude. It’s something I cling to, something I try my best to hold on to to get me through).
The best advice I have received have been from other sufferers.
- Trust your body, believe your body, fight your corner and stay strong.
- It’s okay to have bad days, everyone does, just don’t let them rule you.
- Look for the positives because even in the darkest times there are always things to be thankful for.
- Learn to pace yourself!!! Only ever do 80% of what you think you can do, that way you’ll never over do it.
- Don’t look at equipment as “giving in” or “giving up” they are often the ticket to freedom.
THAT right there is REAL advice, that shows understanding and is actually helpful in the life of a chronically ill person.
And in honour of world book day, have a very fitting Harry Potter quote.