A few days ago I was taken to hospital by ambulance. Not a particularly shocking event for me or my family anymore, (although upsetting for those who love me to see.)
Recently I had been feeling the symptoms of my disorders quite strongly: like cement is being poured into my legs (sometimes they go numb), I lose my sight for about 6-10 seconds everytime I stand up, I get really short of breath (feels like I can’t get enough oxygen into my lungs), my heart rate rises very high (like at least 130 – 160 bpm, I lose my hearing, my muscles become very weak and if I don’t lie down, I just pass out — which is basically my body doing what it needs to do to reset the pumping of blood to my heart and brain. Need to reset blood pressure = need to get horizontal = if you don’t lie yourself down we’re going to make ourselves pass out.
Another day went by and by this stage I couldn’t eat or hold fluids down and I had had a migraine for almost two days that was getting worse by the hour, so I reluctantly let the family call the ambulance. Usually Dave would just drive me in to hospital but I couldn’t stand up without passing out. I needed IV fluids STAT, and the paramedics out here know me and know my protocol.
We got set up in the ambo and got going. The paramedic assisting me, has taken me to hospital a few times, so we kind of sort of know each other a little bit, so we chatted now and then, and then he asked: “How’s Dave’s cafe going?” I replied: “The cafe is going great”. Then tears lightly formed as I added: “But it has to close … because of me.”
The paramedic was looking at his laptop at the time but immediately looked at me and said: “Well, not because of YOU. Because of your illnesses, you don’t control that.”
I’ve been trying to tell myself this for ages and my family tells me this, my husband tells me all the time.
I’m lucky to have close, immediate family, and quite a few friends who are very supportive and never make me feel like I’m making illnesses up.
But I’ve also had my fair share of people telling me I am making it all up, or I’m a hypochondriac. Despite tests proving these illnesses are real and happening to me.
Even some quite close relatives (who due to distance haven’t seen me or what my life is like) have told me, my children and my husband, that they believe I’m using my illness to control my husband and our children, among other ridiculous claims.
I get people (from the general population as well as the medical profession) thinking I’m faking my illness all the time. Until I pass out in front of them or something visual that they can then believe.
I can’t begin to accurately describe how awful it feels to know that someone thinks I would make this shit up. It is absolutely soul-suckingly awful, to feel like such a burden on other people. So to then hear people question your near death experience or whether you’re “really THAT sick”, just makes me feel a hundred times worse.
So, when I was in that ambulance, and a third party, unbiased, person verified that it is my illnesses that make my situation what it is, it’s not ME choosing this situation, it was powerful beyond words.
Those words from that paramedic sank in over the next few days and they truly changed my life. I finally allowed myself to believe that I am not to blame for my illnesses, that this situation is happening to me and I am doing my best to work within it, and, as always, working on trying to get out of it.
And it also helped me to realise that when people don’t believe me about my illnesses, then that is their issue, not mine. And it says more about them than it does about me.
I’m always thankful for those in my life who support me, but I wanted to write this experience out as a reminder that you never know what small thing you might say to someone that might make a difference to how they’re viewing themselves and their life.