- What does it really feel like to have fibromyalgia? What is the pain really like?
A friend asked me this last week and I was practically in tears I was so grateful that she cared enough to ask what it was like to live me life. I was more than happy to explain a little bit about what my life is like behind closed doors. In four years no one has ever asked me that question before.
2. What can I do to understand you better?
It would mean a lot to me if instead of getting annoyed at me for not being able to do everything a normal person does someone would ask me this. I don’t just flake out because I’m flaky, I flake out because my body refuses to listen to my mind. I want to do things so I make plans, but then at the last minute I find I am so exhausted I can’t follow through.
3. Is there anything I can do to ease your pain?
Sometimes there is nothing you can do but express willingness to listen, but other times just the smallest bit of assistance would mean the world to me.
4. I know you are doing all you can and that is enough for me
People with chronic illness have to deal with not just their disease, but the guilt and judgement that comes with it. We know that we are a burden and we feel guilty about it always. We try to do everything we can but we always fall short of what a healthy person can do. Acknowledging our efforts would be a huge mental boost.
5. I know your illness is real and that you are not crazy
When you have fibromyalgia or Lyme Disease you are told on a regular basis that you are nuts. You are told by most doctors, the CDC, random strangers, and even friends and family members. It is terrible to have your life destroyed by a disease only to be told that it is only in your mind.