Things I Wish People Knew About My Illness

As I’m new to this whole blogging thing, I’ve been looking into other blogs related to CFS/ME. I’ve just found one here on WordPress (http://silverwingssong.wordpress.com/) that had a post that really inspired me to write my own, similar one.

  1. Just because I look “healthy” doesn’t mean that my condition isn’t real. Mine is an invisible illness. I’m not being lazy! The fatigue is REAL. And it is pervading. It affects every aspect of my life  – from brushing my teeth, to participating in work. Do you think I want to admit that simple things are a challenge?
  2. I have tried to hide how exhausted I am – in fact, I’ve mastered the art. So, if I look tired, I am really tired! And I hate that you can see it.
  3. I’m sorry that I sometimes snap at you, or seem short-tempered. Losing my sense of control over my life is frustrating, being tired all the time is frustrating, fumbling for words is frustrating… When I’m frustrated I snap. But know that I always feel bad about it.
  4. Be patient with me. I struggle to express myself verbally. My illness has turned my brain to mush, and I’m having trouble accessing my old “filing systems”. It frustrates me even more than it might frustrate you.
  5. To my employer, I’d like to say thank you for your understanding when I first was diagnosed. Please continue to support me. I know that I need more time off sick than other employees, but I genuinely can’t help it. Working formed part of my identity – no longer being able to work full-time has dented my confidence significantly. Like everyone else, I want to feel that I contribute to my family’s finances… I hate that we are less financially secure than we were before my illness.
  6. I feel guilty all the time. It’s a reality of my life, so no additional guilt-trips required, thank you. I feel guilty that I can no longer contribute as much financially as I used to, that I can’t cook or do housework in the way that I did before, and that I avoid some social situations I used to enjoy. I don’t need you to remind me of the things I can no longer do – believe me…I KNOW!!
  7. Forgive me if I send my apologies for a social engagement. I don’t always have the energy. They require much more energy from me than you sometimes realise…more energy than I often possess.
  8. I don’t enjoy being wheeled around in a wheelchair – particularly when I get stared at as I stand up from the chair! Not everyone who needs to use a wheelchair has no use of their legs. I agree to use the wheelchair only because I want to be able to get out in the community and try live a little of my former life.
  9. I feel like crying when I see people in their 70’s and 80’s doing things with ease, that I can no longer do. It frustrates me, it saddens me, and it knocks my self-esteem. Perhaps it shouldn’t, but it does.
  10. I am allowed to occasionally be sad… You would be too if you had to re-think your whole life.  I miss my old life, and am allowed to grieve over its loss now and then.
  11. I need different things from you at different times, and I can’t always ask you for it. I still struggle with my pride. If I do ask, know that it has cost me something to say. And accept that I genuinely need it.
  12. Regardless of whether I’m having a good or bad day, I need your support and understanding. I truly cherish the friends and family in my life who do just that.
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One Response to “Things I Wish People Knew About My Illness”

  1. I will always be there for you. I can relate to so many of those things, but certainly not at that level. You have made me appreciate life that much more and I will stop taking it for granted.

    Thank-you Sam, and no one should ever underestimate what you have gone through and what you are still going through!

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